A Life & Death Conversation With Dr. Bob Uslander podcast

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Dr. Lonny Shavelson is the founder of Bay Area End of Life Options, a medical practice in Northern California devoted to educating about medical aid in dying and supporting patients and families through this process. Contact Bay Area End of Life Options Transcript Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Please note there is some content that is explicit in this episode. Dr. Bob: Dr. Lonny Shavelson is the founder of Bay Area End of Life Options, a medical practice in Northern California, devoted to educating medical providers about medical aid and dying, and supporting patients and families through this process. As you'll soon discover, Dr. Shavelson is an intelligent, articulation and passionate physician, who has a huge heart and is committed to providing excellent care to people dealing with terminal illnesses. He and I are bonded by a similar commitment. We also share a bond in that we were both emergency physicians in the past. We've seen the standard way people are cared for at the end of life, which is often not very pretty, and often not aligned with how they've lived their life. As you'll hear in this interview, Dr. Shavelson has experienced his own brush with death, which has created far more understanding and empathy than he could've imagined. I hope you find this discussion as informative and interesting as I did. Well, Lonny, I've been looking forward to this conversation with you for quite some time. I saw it coming up on my calendar. I was excited and woke up today really energized to have this conversation and be able to explore deeply, what it's like for you to be a physician that's in the same realm as I am, in support of medical aid and dying. Thank you for taking the time to speak to me and my listeners today. Dr. Shavelson: You're really welcome, I'm glad to be here. Dr. Bob: Yeah. So, just maybe give me a little bit of ... Give all of us a little bit of background, as to how you came to be the physician with Bay Area End of Life Options. What was your journey leading up to that, and what made you decide to venture into this? Dr. Shavelson: Let's see if I can condense this a little bit. When my interest in going into medicine in general, as happens with many people who go into medicine, comes from a family history of dealing with illness. I think many people in medicine if you ask them this question, why you went in, they'll start off with the, "I want to help people," answer. And if you dig a little bit deeper, you'll find there was some illness in the family in their prior history. So mine, very specifically, was my mother had Crohn's Disease. It's an inflammatory disease of the bowel. And because of that disease, imagine having cramps and diarrhea all of your life every day and having multiple surgeries on your bowel to try to accommodate it and bowel obstructions and all that. She was a pretty miserable person, and also in retrospect, severely depressed. So when I was starting at the age of about 14, I became not only aware of the fact that my mother was suicidal, but she enrolled me in pacts for her death. Part of the reason that I was guided toward medical school was because of the, my mother sort of wanting to know that I would be available, not only to help her in her illness but also to help her die. Dr. Bob: Wow. Dr. Shavelson: So we used to have conversations around the dinner table about my mother's dying. And I thought that was the normal way people grew up. I didn't, you know ... You know, if you grow up in a certain way, you assume that that's the way it is. You don't have any other experience of any other childhood to compare it with. So I thought discussions about death and dying were what people talked about during dinner. Dr. Bob: Not me, it wasn't happening at my dinner table, I'll tell you that much. Dr. Shavelson: Yeah, now I realize that [inaudible 00:03:48] doing that. We didn't have football and baseball on the TV. We had sort of philosophical conversations about death and dying, including suicide. Dr. Bob: Wow. Dr. Shavelson: So my mother- Dr. Bob: We had the Dick Van Dyke show, and the Andy Griffith Show. Dr. Shavelson: Well, we did some of that too. It falls short to what it was. So anyway, I grew up with death and dying discussions, including the potential for suicide as a rational way out of an illness. That was one thing that guided me, certainly into medicine, and when I got into medicine, I kind of left that behind for a long time, realizing it was pathological. It wasn't reasonable, especially in my mother's case. She was severely depressed I was her son. She had asked me to help her kill herself a number of times, and I had turned that down. But in the end, I knew that if she was very sick, and if that was what she did, and if it was more reasonable that I would then help her. And this was way before anything like medical aid in dying or what was then called physician-assisted suicide, was even thought to be legal at any time in the future. We were back in the 1970s by the time I went to medical school. Anyways, so that led up to ... You know, I got into my medical career as an emergency medicine doctor. Over time, I developed a dual career as a journalist and a photographer, as well as a medical doctor. So I worked about half time at each and actually moved fairly advanced in journalism with writing some books, with working with NPR as a reporter. So my journalism career took off in the same way that my medical career did, pretty much advancing over time. And to cut this to the chase, in 1996, I wanted to explore this question about what was then called physician-assisted suicide more deeply on an official level. The reason was that Jack Kevorkian was starting his nonsense, killing patients. And I always change that to killing patients who weren't his patients. And I thought that that was not a very good model of what we could look at for helping people die in the United States. But it really struck me that there was a significant underground, where ... You know, and I know, Bob, that before anything was legalized, if somebody were close to death and were really suffering, we would turn up morphine drips, we would increase medications in such a way that we knew we were participating in aid in dying. But with a wink and a nod to the families saying, "Give him morphine once an hour," type of thing. Knowing that would bring on the death. Because the patient was having severe suffering and was nearly unconscious and just needed to be helped along. That, and the presence of the ... I was going to say [inaudible 00:06:38] presence of the AIDS community. People were dying of Autoimmune deficiency disease. And they were really actively participating, but in the underground, of hoarding medication. So if you had AIDS, you could easily tap into the AIDS community and get thousands of tablets of morphine or methadone. It wasn't hard to do, because people were hoarding their medications with the intent of using it themselves. And if they end up not needing it, then they would pass it on to this sort of medical bank where medications were stored. That was the beginning of an interest I had in the pharmacology because they had the pharmacology to really try to do this right. Whereas individuals in their homes and in darkened bedrooms were talking with their family about wanting to die and then taking all of their, let's say their hospice medications. That often did not work. Anyways, this led to a book I wrote, called A Chosen Death, in 1996. And it was called the Dying Confront Assisted Suicide. It was about this underground ... I found families and doctors and nurses, and various people who were participating in a very significant underground. Where they were helping people, who requested aid in dying. They were doing it without charting a note; they were doing it without keeping any record of what happened. But I was able to write the story of five different families as they progressed through this. And in 1996, A Chosen Death came out. And the conclusion was very, very simple. When you look at what I call dark bedroom suicides when you look at those dark bedroom suicides, hidden, and nobody could talk about them, there were so many things wrong. One was that often because of inexperience; the wrong people were taking the wrong medications at the wrong times for the wrong reasons. And then taking medications that didn't work and having disasters follow. It just was a terrible scene, actually. And my conclusion was, this is going to go on like ... Comparison with abortion is very strong, is that there were back-alley abortions, and we were having dark bedroom suicides. What's wrong with the back alley abortions is that they were terrible, they were not supervised, they were not done well. And they would continue no matter what. What's wrong with the dark bedroom suicides was the same. So I made a very strong, I think argument in the book for legalization. Based on the fact that making this illegal was not working, was creating a disaster for families at the most important parts of their loved one's lives. That started, my political involvement for about three, four years I stayed very politically involved as the supreme court was writing its decision. In 1998, the Supreme Court made a decision where all nine justices decided this was not a constitutional right. But that the states had the right to do this. So in other words, there's nothing in the constitution that says that legal medical aid in dying should exist. But there's also nothing that prohibits the states from doing it. So one by one, I watched the states Oregon, Washington, Montana. It took 22 years more after I wrote the book A Chosen Death before we got this all legalized in California. And then, to bring it up to the present, when the law was legalized, I thought the way of starting it up was terrible. There was not enough primary education happening. Doctors were confused about what it was. The people who were looking at it were like, medical risk advisors and hospitals, and lawyers in hospitals trying to figure out their policy. And nobody was looking at the clinical practice of how this would work. So I decided to start up a practice with the intent of a couple of things. One was that I would be available to patients who could not find another doctor to do medical aid in dying with them. So if a patient had a desire for medical aid in dying or at least a question about it, and they approached all of their physicians, and the physicians said, "No," for a variety of reasons ... And Bob, I'd like to talk to you more about that in a bit. But if they couldn't find another doctor, then I would become their doctor and help them with the physician aid in dying. And that started up in day one of the new law, on June 16, 2016, and has been going ever since. And has grown so much, the request for services from my practice Bay Area End of Life Options has grown so significantly that I had to take on another doctor. So I now have Linda Spengler working with me, another physician. And then we took on a wonderful nurse, Thelia De Wolf, who is a hospice nurse. And we sort of borrowed her permanently and brought her into our practice. So we have a practice of three people now. To date, we have taken over 800 requests for medical aid in dying from different patients across the state of California. And for various reasons, we sort of brought that down by referring patients to other doctors or talking to their doctors about participating. There are lots of ways we'd windle that number down. So right now, about 240 patients have been in our practice, where we follow them for a request for medical aid in dying. And to be clear, when somebody calls us for medical aid in dying, it doesn't mean that we just give them medical aid in dying. There's a long, evaluative process. We work with them about their palliative care, we work with them with their hospices. We talk to them about ways they may die, and that this is just one of the ways that they may die or choose to die. And what that's resulted in now, we stay at the bedside when a patient takes the medication. It's the hallmark of their practice. Is that we don't feel that this should be the responsibility of the patient or the family to be taking medications at such a difficult and anxious day, the day that somebody is about to die. And everybody's worried about it. And when we walk in the door, the worry just goes out the window and they're able to do what they should be doing, which is pay attention to their loved one who's dying. And pay attention to themselves and how they're reacting, instead of being the ones who are mixing up medications and worrying if it's right, and worrying how it's going to go. And they're all alone doing this medical procedure, with the patient. We have been at every one of the bedside deaths. We'd been, I'm sorry, at the bedside of every one of our deaths, which are now 114 deaths at the bedside. The advantage of that is that we've been able to get really good at this. We get a sense of the social aspect; we get a sense of the family aspects. We get as a sense for the need of how much palliative care, and how to talk with the patient about alternatives. They don't have to do medical aid and dying. But if they really do decide that they want medical aid in dying, we are there for them. And that's the fundamental part of our practice. The other thing that having such experience does is it lets us travel the state a lot. We get requests from all over, and we travel quite a bit in order to help patients. And every time we go to a place where there's no access, where the patients ask all of their doctors, and they couldn't find anyone. We would then talk to the doctors in that community and usually find two or three. So a great example is we found that we were having to go very far up north for us to Paradise, California, near Chico. It's a three-hour drive. We get tired doing three-hour drives and coming back. So we started looking around and beating the bushes, and finding docs in Chico who might be open to it. And we now have a group of three doctors in Chico who are very open to starting their ... To adding to their own practices, their family practitioners. And they are now going to add to their practices medical aid in dying. And we are going to train them. And soon, we will not have to go to that part of the state again. And that's the wonderful part of this. Is that we don't want to have this practice of medical aid in dying become centralized to a small practice like ours. We want many, many doctors around the state to be doing this. And slowly we're seeing that happen, where there are areas of Northern California where we no longer go because we know the doctors up there who will. Dr. Bob: And that's phenomenal. Just being able to expand the access for people. And of course ... First of all, thank you for sharing that background, and kind of expressing in such great detail what your practice entails, how you support patients. Thank you for doing the work. I know that it's not easy. It can be extremely challenging, emotionally, and taxing in many ways. Because I'm also doing a very similar style of practice. As much as it's challenging and taxing, it's also very gratifying, right. I know that you feel the same way. That there are people who are suffering and struggling, and they've been shut down by many physicians, and they're just so grateful to find someone who's willing to not just support them in going through the process, but truly support them. And truly support their families, and make sure that they have all their questions answered, that they know all the options. And that the fear of this is, if not completely removed, certainly lessened. Dr. Shavelson: Yeah. You know the most common, repeated expression I hear is about what you just talked about. Is about fear. Commonly when somebody's dying, they've never done that before. And so they're quite afraid, what does it feel like when I get that close? I mean, you may know you have your cancer and all that. You know what it feels like. But when you're that close to dying, you don't quite know. It's really frightening as to where do you go, and how does it work, and how much suffering is entailed in the process of dying. So I'll sit down with a patient for an hour or two. And we will talk about what I call the how you die conversation. And the thing that, the response that's most common, is that they will tell me, this is the first time that I'm not afraid of how I may die. That nobody has explained that to them, and given them all of the options, including medical aid in dying. And really explain, this is how the process works. You may slip into a coma, and be quite comfortable. Or you may have an anginal agitation. Or you may be short of breath, and that can be treated symptomatically, but not completely. And we go through the how you may die conversation, and then every individual. And then they take a deep breath, and say, "My god, this is the first time since my diagnosis that I am not sitting here afraid of how I die. I know that I control it now." And that is the most moving, and tearful moment that I've ever experienced. Dr. Bob: Yeah, what a beautiful thing that is. And it's kind of crazy to think about, but I have that same experience over and over again. No one has told me, no one has talked to me about this. No one has actually talked to me about my death. All they talk about is how they can palliate me, and how they can comfort me and everything leading up to it. Dr. Shavelson: That's right. Dr. Bob: But even hospice folks. For some reason, there's just this reluctance. It's a fear on the part of the providers to actually engage in that conversation. Maybe it's their own fear; maybe they're afraid they're going to upset people. But it's just the opposite. Dr. Shavelson: Yeah. You know, I think Bob, that in a lot of ways, the entity of the legalization of medical aid in dying, has made it so, that before you offer somebody such a serious option, you have a real conversation with them. It's kind of almost built into the law, though I don't think that's necessarily the reason. The law really says that we have to explain all alternatives before we can accept a patient for medical aid in dying. And that's not what drives my conversations with the patients. What drives my conversations with he patients, is that they really should know what's up in their future, and how they're going to die. But that conversation about, how will dying happen, is oddly enough in legislature for the first time. And I think that's a healthy thing. There are many bad things about this law, but there are some good things about this law. And as it sounds like, your practice sounds very similar to mine, in that we spend time because we are not going to have this decision taken lightly, to take medications to end your life. We don't want that to be a casual decision. And therefore, we're going to have a really in-depth and truthful conversation with our patients. Dr. Bob: Right. And really, by setting up our practices the way that we have, it really facilitates that. I understand the limitations that a lot of providers have, a lot of physicians. They don't have the time, or it's very difficult to make the time to have the depth of conversation that is required to work through all of these different aspects of life and death. There have been a number of occasions where I have been asked to come and speak with someone who's requesting support through aid and dying. And after exploring all of the things that are leading up to it, and their reasoning, and what they're going through, they've actually made the decision to not request medical aid in dying. But to choose a different route, which in several cases, has meant bringing things into their life which will enhance the quality of their life. To try, some of the integrative therapies that we offer. They'll bring in a music therapist to do some legacy work. They'll bring in exercise, or physical therapist to provide them a little bit more human touch and connection. The conversations that sometimes occur unexpectedly have been so meaningful and profound. And then they may come back, in another month or two, or may not. But I think the opportunity to explore this option, for many people, has allowed them to look at things in a different light. And I think as you've experienced as well, sometimes people just want the option available to them just in case. They have a clearly terminal illness. They know what's coming in their future. But they're not in the point where they're ready to check out. But once they have this available to them, they have such a dramatic shift. And part of it is- Dr. Shavelson: It's a shift in thinking and feeling. They become comfortable to explore. I'm right with you, is that what happens sometimes when you tell them that medical aid in dying is available when I sit at the bedside and I hold somebody's hand, and say, "It's okay. We're here if you want that we will do that." And agree with them, which is the first time they've had agreement rather than battles about it. And I say, "It's okay if you want to do medical aid in dying, I'm here. I will do that if you get to the point where you're suffering enough." And that allows them to go back into treatment. I'll give you a very specific example we had just recently. We had a 58-year-old guy with lymphoma mass in his chest, who was quite uncomfortable from it, that turned out to be cancer in a lymphoma, which is quite treatable. But the treatment takes chemotherapy and radiation, and he had seen the path that some people with chemotherapy or therapy and radiation go. And it's really suffering and uncomfortable for some people. So he turned it down. He said, "Okay, I'm deciding not to have that treatment." They told him it was still treatable; they told him he could live with it. But he decided, no I'm not going to do all those nasty chemicals and the radiation. And he was sent home to hospice because that time he was getting sicker. And then it took him a month to get somebody to agree that they would help him in medical aid in dying, which was what he was asking for. So he was in a hospice that didn't participate, and the family found my practice on the web. I came down to see him. And he ... You know, we had the long conversation about how you die, and why he wanted to reject treatment. And he was just fundamentally scared of dying, and he wanted not to have these sort of dangerous, and difficult treatments on the way that would make him even more uncomfortable and give him more agony. He just didn't get it. So, I agreed. I said, "Okay. You can, if you want, have medical aid in dying. We will be there if you're suffering. And it's not there yet, but we will be there if you're suffering in any way, shape or form gets too bad that you want medical aid in dying. We will be there for you. And oddly enough, he turned back around, decided to go back and have chemotherapy and radiation. He knew that if the chemotherapy and radiation got so bad for him, he could turn to us and have medical aid in dying. He knew if he's dying eventually got so bad. So he went back, and he had chemotherapy and radiation, and lived for another year and a half as a result of that decision, always knowing that he had the ability, if things got so bad, to have medical aid in dying. That we would help him die. And then it took a year and a half, and then three months after that when he went back into hospice after the treatment stopped working it was another three months before he finally got to the point of saying, "I'm now uncomfortable enough." And we helped him to die probably about 18 months after his initial diagnosis when he was dying within weeks when we first met him. So these turnarounds can be very dramatic by just saying, "If things happen that are bad, we'll be there for you." We actually have two patients now on the transplant list. One for a bone marrow transplant, and one for a liver transplant, who are keeping us just sort of in the sideline. Dr. Bob: Yeah, in the wings. Dr. Shavelson: Where they're, in case ... The bone marrow transplant especially, because if a bone marrow transplant fails, it can fail spectacularly. So he's starting the bone marrow transplant only because he knows that if things really go down fast, if he gets very, very sick very quickly during the transplant process, that we will be there to help him die. And that's allowing him to move forward with the transplant. I think those are phenomenal stories. They're not the typical death that we do, but they happen often enough, that I can tell you taking away the fear of death allows you to really push forward with your life. Dr. Bob: And that happens from the very first conversation, right. And it's so profound; it's palpable. It's palpable when you walk ... And sometimes it happens from the first phone call when they know that you're going to be coming out to meet with them. There's already this sense of, oh my goodness; someone is on my side. They're willing to hear me. It's been ... There's been so many conversations that have been so touching. And it affects not just the individual, but their entire family. Dr. Shavelson: Of course. Dr. Bob: You know, one of the things that we talked about, and I think you wanted to come back to this as well, was why physicians say, "No." Why they're ... So there are two parts to this. One is, what's going on, why are physicians reluctant or unable to provide support? And then the other part of that, is what's the danger of having more physicians participating, who haven't gone through a training process, or who don't have the experience that people like us have. Dr. Shavelson: Yeah, you hit this on the nail. This is exactly the dilemma of how to deal with the access problem. So let me take that on if I can. The major problem we're having in California now is lack of access for patients who want medical aid in dying. There just aren't enough doctors participating, in order to do this. And I think when you look at the data, and everybody says well if you look at California in 2017, there are only 376 deaths from medical aid in dying. It's a tiny number relative to the total number of deaths. My answer to that is that's not because so few people want medical aid in dying. It's because so few people can access medical aid in dying. If you really wanted to do a survey, you have to find how many people have requested medical aid in dying, and then were turned down and just couldn't find anybody else. And I think that's a huge number. So it's a problem of supply, not demand. The demand for medical access in dying ... Medical aid in dying, I think is quite significant. The supply is not that high. So let's get into that. There is the most common reason that I hear that a doctor says to a patient. And these patients relay these conversations to us. They'll say, "I called my doctor up, and he said you know what, I understand your position, but I don't know how to do this. I have no experience in it. It's not that I'm morally opposed. In fact, if I knew I could do it, I'd be glad to help you. But there's been no training; there's been nothing that I know about it. In fact, you're my first patient asking for it." Is really common. And so, I don't know, and I'm not comfortable doing a procedure I've never been trained in. I get that comment from doctors, more commonly than I get that the doctor is morally opposed. So many, many, many patients tell me about their doctors who say, "Yeah, I understand what you want, but I can't do it because I've never been trained." Doctors, as a rule, like to do things they've been trained in and don't like to do things they haven't been trained in. And this law never incorporated anything about training. Bob and I can tell this audience, that you don't want to do this without knowing what you're doing. We've heard some strange stories about doctors using the wrong medicines because nobody told them what to do. And they sort of thought, well this is logical. I've got a hundred tablets of Ativan here; I'll just give them that. And that leads to a potential disaster because Ativan will not bring on death. It will bring on a deep sleep for a long time, but you will not die. So anyways, mistakes happen. The answer of that, from my point of view of practice, is that we have a policy where any doctor that says that I don't know how to do this, but I don't mind doing it, we'll call them up. And we'll say, "Can we help you through the process?" And we have done that with a number of doctors who said, "Wow, you do that?" And we don't charge a fee for it. We will just talk them through the process of what we've learned, and how this works. That could be the minimal amount of training that somebody needs. And at times, we'll do this thing where I become the attending physician for that patient. The doctor who was hesitant becomes the consulting physician, which is just the confirm diagnosis and prognosis and mental capacity. So that doctor basically sits there and watches while I help the patient to die, and watches how we do the paperwork. And watches how we write the prescriptions and what the pharmacology is. And then the next time, we'll do it again together, but we'll switch roles. And that doctor will be the attending and controlling physician who supervises the process, and I'll be the consulting physician. And so we switch roles, and we've done two cases together. And then after that, they're on their own. They've learned. And so, I have found that if one by one, we can train doctors who are interested in doing this, and then have the experience. I think you and I both know this is the average doctor in the United States probably has maybe five to 10 of their patients die in a year. So if you think about that, if maybe one out of every will ... Make a very high number, let's say one out of every 500 people who dies wants medical aid in dying, that means the average doctor in the United States who sees five to ten patients a year, will only have maybe one request for medical aid in dying every three to four years. And in my opinion, that's not enough to get good at what you're doing. If a doctor does one medical procedure every three or five years, they never ever have enough patients to really get good at it. And then that brings on the debate of who should be doing this. I can't say I have the answer for that. I think that patients who have a lot of ... I'm sorry, doctors who have a lot of patients who die, like oncologists, like maybe ALS doctors. They certainly would have enough patients die in a year, that they could get pretty good at doing this and they would know what they're doing. Mostly for me, I believe it should be hospice doctors. Because they're the doctors who see the most patients die of anybody in the country, and they're the best at seeing people die. They have access to nursing care; they have access to home visits, which are crucial. Because these patients are sick, and they can't get to their doctor's office for help. So I actually think this should be incorporated into the hospice model as one of the things that happens if you go into hospice you can get wonderful palliative care. You can get wonderful social workers, and chaplains. And if you want medical aid in dying, that's just one of the things that hospices offer. That hospice offers. And that's the ideal. We now have, Bob you've got a hospice in San Diego, I know, where there's a doctor who's the attending physician. There's your medical practice which models that. And I know that we have three hospices up here, where the hospice just if they get a request for medical aid in dying, they take care of it. It's part of hospice care. So that's kind of where I go. I actually think, in some ways, it should be a specialty care. Because it's much more complicated than most doctors think it is. It's not as simple as writing a prescription, and you're done. Dr. Bob: Right. And that's been my concern. And I've heard about some stories ... And at the beginning of our experience, we discovered some things that we weren't aware of. It was a learning process, and we discovered that different counties, medical examiners approach medical aid in dying differently. Certainly, at the beginning, they were unfamiliar with it. And there were some situations that occurred in patients' homes that were very traumatic for families when the police showed up at 2:00 am in the morning and asked a whole bunch of questions because they just weren't prepared and familiar. Different counties have different rules regarding the involvement of the medical examiner. Different hospices have different approaches. There are so many nuances that, if you're just doing this once in a while, you may actually be doing the patient and family a great disservice, if you're not aware of these nuances. So I think as you've been doing, we've also been trying to guide and train some of the physicians who've expressed a willingness. One of the things that I love is when I have a patient who tells me ... Who comes to me, because they want this to be done properly. And they know that they can trust us, and will get very intimately involved and provide a high level of support throughout the process. And they tell me that they don't know if their doctor's willing to be the consulting physician. Or to be involved in any way. They're not even comfortable necessarily approaching it. And we've had, as I'm sure you've done, we've had the opportunity to call and speak with these physicians. And help them understand more about the process. Help them understand what involved to be the attending physician, what it would involve to be the consulting physician, and to offer that support and to try to, I guess in a sense, convert. Because these are people, who may be open to it. They're not morally opposed; they don't have a religious opposition. They just aren't familiar. Dr. Shavelson: That's right, that's right. And I think convert is the right word. Dr. Bob: I think that's exciting for me when I get to speak to another physician and help them understand what the process is, and then become a resource for them, whether they're willing to take it on and receive guidance and training and make this a part of their practice. Or just know that there's a resource, there's someone else to reach out to when somebody does bring up this possibility to them. Dr. Shavelson: Right. You know, I think guys like me and you, we become ambassadors. Dr. Bob: Exactly. Dr. Shavelson: And that's a significant part of my practice, and I love it. The things that, to move this to a very positive note if I may. When I started, it was disastrous. There was just an overwhelming need, and a lack of response because nobody knew what they were doing. When you look at the beginning of when this started up, it was hospices we're against, and everybody I talked to said we don't know how to do this. So we don't agree with it. And over time, what's wonderful to watch, is how patients have been the leading force in making this expand and work and get better every single year. And you see what I've seen with our hospices in Northern California. Is as they've started getting patient requests, they couldn't just keep saying, "No." Hospices are fundamentally a loving and caring and responsive organization. And with so many patients asking for help with medical aid in dying or the way I phrase it better, to consider medical aid in dying, the hospices had to do something. And what we see now, is that something like 60 to 80 percent of the hospices in my area have now come over and say, "Yes, of course, we respond to requests from medical aid and dying. We'll do referrals." Or we'll be the consulting doctors. Or we'll refer to your practice if we can't find that their regular doctors do that. And so I have watched, number one, in terms of hospice care over two years, watched most of the hospices completely change their attitude, because of patients' desires and the need of the hospice to respond to the patient's autonomy requests in making their own decisions. And that's been very gratifying to watch. As well geographically, I've now seen that there are areas of the state that we no longer have to go to in Northern California, because they have enough doctors in that area, and doctors that we know that if we get a call from Chico, we now say, "Oh, don't use us. Call Doctor so-and-so. He's in your area; he can be close to you. You'll probably even know him." And most of the time, they actually know the doc. Dr. Bob: Because smaller communities than ... Yeah. Dr. Shavelson: Exactly. Exactly. So I'm gratified by the amount of progress we've made, and I'm shocked by how much more there is still to go. Dr. Bob: Yeah. And you are a phenomenal ambassador. Every time I hear you speak, and it's been several times now in various capacities, I'm inspired, I'm grateful that I get to be part of this world, alongside people like you. Dr. Shavelson: Thank you. Dr. Bob: No, absolutely. And Lonny, you actually not long ago went through your own medical challenge. And I'd be interested to know ... I'd like you to share a little bit about that. I know you indicated that you'd be willing to do that. And I'm also interested in how the awareness that this was potentially, if it ever came to that, available to you. How that impacted you. Did you see it from a different perspective? Having been going through your own cancer journey? Dr. Shavelson: Yeah, well. So just a year ago, I'm actually one year out of the end of my treatment now. So I had a cancer development. An [inaudible 00:40:33] cancer that this thing was located at the back of my tongue, not where I felt it. I found it because I had a swollen gland in my neck, and realized that it was unusual to have that gland in that space, even though it was tiny. So I got it quite early because I went immediately to the hospital. And being a doc, I can order up my own tests. Silly of me, but that's the way I work. Walked in, and had the interventional radiologist that I knew to do a biopsy, get a piece of this thing. And it turned out to be a squeamish cell cancer that was metastasis from my tongue. So I had a bunch of lymph nodes involved, and a primary cancer in my tongue. And took a rather, I went down to Stanford and had a rather hellish treatment, to put it mildly. I don't want to scare people away from good treatment, but we did a significant amount of radiation and chemotherapy to knock this thing down. And it did, it worked. But during the six months of treatment, I became quite delusional, paranoid. I just got very, very, very sick. It was an awful experience. Nonetheless, at the end of that experience and a very slow recovery. It's surprising how long it takes to recover from that. I'm now well, and back to full speed and have a couple of long-term side effects from the chemotherapy, like a dry mouth and some toe numbness. But otherwise, I'm healthy and full strength and all that. And it's now a year and a half after full diagnosis. And a year after the end of the last radiation treatment. So how did that affect me? One, it scared the shit out of me. It made me feel vulnerable. I had been ... This was diagnosed when I was 65 years old, thank god for Medicare. It was two months after I crossed the Medicare threshold. I was covered for all of this; it would've been a disaster even with my good health insurance. But it took away my feeling of having had a life of lack of fear. Just felt like things were going well in my life always. And suddenly it became, I'm the cancer patient. So the vulnerability persists. And the feeling that bad news can happen at any time. You know, it's not like I didn't know that. I've been a ... I was an emergency doctor for 30 years before I started that as I think you were, Bob. We don't have to be taught that bad things can happen quickly. But they hadn't happened to me, and I was feeling pretty good. And the feeling of vulnerability persists. The feeling of medical aid in dying being available, well I've been a pill hoarder for the potentiality for this since I was probably 22. Again, I grew up in a family that confronted death very early, and we all had our hoard of pills in case anything would happen. So there's no news in that for me. I like the idea that it's freely available, and that I won't have to do it myself. But in terms of empathy, I think I gained a whole lot about being with patients and kind of knowing the information they want. And how truthful and calm the information has to be delivered, and it's not like I didn't know a lot of this beforehand. I kind of like to think I was a fairly empathetic doctor before this. But the tone is different. And I let all my patients know that I just came through this cancer experience. It creates this different bond with us. And I think that's important. It's a new tool. For me to talk to them from a patient perspective, as well as from their perspective, from the doctor perspective. Dr. Bob: Yeah. I can just see that being so incredibly valuable, and such a point of connection with the patients. Because that's what they want. I think in many cases, that's what patients, that's what people had been lacking, and are looking for in the relationship with a healthcare provider. Is just this sense of connection and understanding. And so knowing that you went through an experience, where you stared at your mortality and feared for what the outcome was going to be, suffered through the treatments. I think that was very comforting and probably endearing. Having lost both my parents in a short time a few years ago to cancer, gave me a different degree in insight and empathy to what family members are going through. Which has really been a gift. But having not faced the illness from a personal perspective, I think that adds something to your toolbox. There's no replacement for that. There's no way to substitute for that. I know that given the choice, you probably wouldn't' have chosen it, to go through that. But as it turns out, it's probably quite a gift for you. Dr. Shavelson: Yeah. You know, the other part of that interestingly, and I haven't thought this through as I probably should, is that the level of suffering that I went through was pretty intense. It wasn't a fun treatment, to put it mildly. But I had the very, very high rate ... there was an 85 percent chance of cure with this particular cancer that I had. So I had in my mind at least through the delusions that I was having in the really bad side effects of the chemotherapy hit my mind very badly. But even at all times, I knew that I was going to have a continued life. An 85 percent chance was pretty high. So there was a real motivation to go through that suffering. That, I want to make very, very clear. When people use the term assisted suicide, let me differentiate assisted suicide from physician aid in dying. Had I chosen during my treatment when the suffering was worse, was most severe, to do a medical aid in dying, it would've been a suicide. And the reason is because I consider a suicide to be when you end your life and you can still have the potential to live. So when somebody has the potential to keep living, and then chooses and decides to end their life, that's a suicide. However, when patients are having the kind of suffering that I was having, and they know that that's the route to dying. That they're close to death. And so they're having the same symptoms that I was having, severe pain. My pain was so severe that I was on a really high dose of opiates. I couldn't swallow, it was a terrible thing. My throat was closing up; it was hard to breathe. And yet I knew that I could live if I could just get through it. The patients who are at the end of their lives, having symptoms like that, severe pain, hard to breathe. Existential angst. Those patients don't know what I knew, which is that I could go on and live. They know that they're about to die. And so the value of going through the suffering is diminished for them. There is no value because their death is imminent. Those are not suicides. Those are decisions about how they're going to die, because they will die soon, no matter how they do it. That's a very different circumstance. I've come to understand that there's a level of suffering you endure if you know the outcome is good. That's very different than the level of suffering you endure if you know the outcome is not good. And those are really different things. Dr. Bob: And that's a fascinating conversation. And actually, I think I'd like to have a follow-up call podcast with you. Because this is something, I don't think we can cover in the next few minutes that we have. But those nuances, those situations where a person could actually go on living if they make certain choices. That they may not be willing to make, because they understand the impact on the quality of life. And I speak predominately of neurological conditions. Circumstances where people are experiencing dramatic suffering. The actual timing and course of their illness may not be quite as clear as with an aggressive cancer. But the suffering is different. Those are the cases that really require so much exploration, and a lot of time and ... They're difficult. Nothing simple about them. Dr. Shavelson: Yeah, you're talking probably mostly about the neurodegenerative diseases. ALS, multiple sclerosis, multiple strokes. Those are ... Those neurologic diseases, when I walk into any other room for those patients, I take a really deep breath, because they are not easy. And you know you're going to have to spend a lot of time with that patient, trying to figure out what's going on. What's the prognosis. Cancer's easy. Neurologic diseases are hard. Dr. Bob: And those people are looking for support, they're looking for resolution. And a lot of times, it's really ... It's not because they are trying to immediately get out of their suffering and their struggle. They know that things will change dramatically. And they're also always terrified that they will lose the opportunity if they take too long. And I think that's not just within our logic conditions. But there are so many nuances to this. I think I've taken enough of your day. This has been fascinating. It's really wonderful to listen. You're so articulation and obviously passionate about this because you know it's the right thing. But you're also responsible. You're taking a very responsible approach to it, recognizing that it's a delicate issue. It's a controversial issue. We know what our stance is, we would never want to try to force our position on anybody else. But I really, I feel a real kinship, and there's a clearer I don't know, a brotherhood of willingness to help people reduce their suffering even if it's not the easy thing to do. Dr. Shavelson: Yeah, and it's wonderful to have you as a colleague, much appreciated. Dr. Bob: Well Lonny, thank you. This has been wonderful. I'm looking forward to listening to it again, and I'm sure that there's a lot of people who will get some great value out of listening to it as well. Keep up the great work, and we'll be back in touch soon. Dr. Shavelson: Thanks, Bob. Keep doing this.…

A Life & Death Conversation with Dr. Bob Uslander

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Debbie Ziegler Shares Her Daughter's Journey to End Her Life With Dignity, Ep. 30 51:58

πριν 6 years51:58

51:58

Debbie Ziegler's daughter, Brittany Maynard at the age of 29 was diagnosed with a terminal brain tumor she chose to end her life. Her story was controversial and painful. Debbie shares her daughter's journey in life and how she ended hers. Photo credit: Simon & Schuster Contact Debbie Ziegler website – Get a copy of her book, Wild and Precious Life Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: Well, Debbie, thank you. I can't tell you how much I appreciate you coming and spending time. We've had a number of conversations over, since we met, which was probably a year or two ago. Debbie Ziegler: Yes. Dr. Bob: I think each time we talk, we get a little bit deeper into the conversations, and I think we both are very aligned in what we're trying to do with our time here. Debbie Ziegler: Absolutely. Dr. Bob: Yeah. I would love to use this time for you to share a bit about Brittany so people can really know who Brittany was. I think a lot of people know the name, Brittany Maynard. It's become, in many areas, a household name, and I think certainly in California, and a lot of people think of her as groundbreaking, but they don't really know Brittany. Hopefully, after this, after people hear this, they'll get your book, and they'll learn a lot about Brittany and about her journey, but I'm hoping that you can share a bit about that, because I think it would be really valuable for people to understand who Brittany was, what she did, and then what you've been doing to carry on her legacy and honor her, so ... Debbie Ziegler: Well, thank you for asking me to speak with you today. Brittany is remembered for the last act of her life, and those last minutes of her life are relived over and over again and spoken of over and over again. She knew they would be, and before she died, she asked me ... She said, "Mama, make sure people remember me for how I lived as much as they remember me for how I died." That is something that I try to honor her by doing, and one of the ways that I honored her was by writing a book about the way she lived, and I titled it Wild and Precious Life because Brittany did live a wild and precious life. She was very much in love with this world, and when she was terminally ill, she would say to me, "The world is so beautiful, Mom. It's just so beautiful, and I'm going to miss it so much." She did not want to leave this earth. Nothing inside of her desired that, but the fact was that she was terminally ill, and she had a terrible and gigantic brain tumor that had been growing for over a decade. When I look back at Brittany's life, I try to focus on the brain and how marvelous and plastic it was to tolerate the growth of a tumor for 10 years and to, as that tumor slowly grew, her plastic, resilient brain transferred function. I try to remember that. Even when I first find out she was sick, she had already lived a miracle, and it's important to focus that. The miracle I wanted to happen, which, of course, was that she wouldn't die, didn't happen, but a miracle had already happened in that she had lived 10 years with the brain tumor growing. Dr. Bob: What a beautiful awareness and a gift. It's so interesting because many people don't have that. Many people have a, are diagnosed relatively quickly after something that starts developing because it's created issues that can't be ignored or- Debbie Ziegler: Yes. Dr. Bob: ... their plasticity won't happen, and so everything changes from that moment on. Right? They're thrown into the health care system and start having procedures and treatments, and so ... You know that this is a fatal illness, even when it's caught early. Debbie Ziegler: Yes. I think that one thing that Brittany and I talked about quite frequently is that every person's disease is different, and it annoyed Brittany that people felt that just because their uncle, cousin, niece, had had a brain tumor, that they somehow knew her journey. The same thing happens to, I think, cancer patients with any kind of cancer. We have to remember, as we interface and speak with and try to love these people through their illness, that every body's illness is different. Just as our bodies are different, our cancer is different. It can be very, very frustrating for a patient to be told, "Oh, well, my aunt did this," or, "My uncle did that." Let's just try to take each patient alone and single and look at their disease and look at their illness separately and try not to bring in all these other judgments based on other stories. Brittany's illness, she had been living with, and the tumor had been growing very slowly, and so that allowed for that plasticity. If a tumor grows in your brain in a quick fashion, a much, much smaller tumor could kill you. Dr. Bob: Yeah, or in a different position, a different location in the brain. Debbie Ziegler: This would be the same for other cancers. It would be the same for people with any kind of cancer. Depending on how that cancer, how that tumor's growing, it takes its own cruel path, and so one of my big hot buttons is that we stop and remember that everybody's journey is different, and everybody faces their illness in a different way. The way my daughter faced it was by getting all the information she could get. She was almost an encyclopedia about brain tumors, about the types of cells that make brain tumors, about how those tumors progress in people of certain age groups. She read white papers. She had a good education, so she was lucky enough to be able to read that kind of paper that might put some of us to sleep. She was able to read it and really extract information for it, so when she entered a doctor's office, she was speaking their terminology, and she was very well read, so that is a different kind of patient. Dr. Bob: Yeah. I would imagine that for certain doctors, that would be a little bit ... I'm not sure if "intimidating" would be the right word, but they're not used to that. They're used to having, to doing the education and kind of doing it on their own terms. Debbie Ziegler: Yes. There is, and there is this paternal mold of medicine that's been in the United States for a long time where, for many years, we looked at our doctors as sort of an extra father in the family that what he said was how it went. We had this paternal model where we never even asked the doctor, "Well, what are my options," and we didn't have the internet, and we didn't have this quick way to get information. In the case of my daughter, she was actually checking out medical documents online and reading medical documents. We're in a different place, and we're in a different time. We're struggling with this old, paternal medical model, which isn't working for us well anymore. Then you add on top of that that if a doctor got a scan of Brittany's brain, one doctor said, "I expected her to be wheeled in on a gurney and unable to speak," because the tumor was in that portion of her brain that allows you to speak and vocalize, and it looked like that must, those skill sets must be gone, but because it had grown so slowly, those skillsets had moved, and she was able not only to speak but to speak very articulately. I do think it was a shock, and a little bit more difficult to deal with, with a patient who's very well read and very outspoken. My daughter was, even from a young child, a very purpose-filled person. I remember they observed her playing when they were analyzing whether she was ready for kindergarten, and they wrote in the report that her playing was purpose-filled. That came back to me as I watched her negotiate her illness, and I thought, "Okay, well, those things that made it difficult to mother her, that purpose-filled, stubborn, willful sort of way, was a wonderful asset to her when she was ill and needed to navigate her illness." People ask me all the time about how Brittany could make a decision like this so confidently, and my answer is that she had the innate personality to question and to, and she also had the educational background that she could absorb the scientific information and accept it on a factual level. The emotional part, matching her ability to be emotionally strong, matching her background to be able to understand the information that is terribly frightening, and which, honestly, I mean, I taught science. I couldn't read it in the beginning. It took me about a month to be able to read about brain tumors. I just couldn't do it. [inaudible 00:11:20]. Dr. Bob: You mean you couldn't do it because it was too difficult emotionally or because it was too, the information was too- Debbie Ziegler: It was emotionally. Dr. Bob: Okay. Debbie Ziegler: I also have a science background, and I taught science, so I could read it, and I could interpret it, but as her mother, having just heard that she had a terminal diagnosis with a brain tumor, emotionally I was unable to read about brain tumors for well over a month. This is a part of what happens to the family of the terminally ill person. Sometimes, they're knocked back into a period of denial where they're unable to look at the truths; they're unable to look at the facts. I think that makes it more difficult in some ways, and yet I'm told by psychologists that denial is something that helps us deal with crisis and eventually move on, as long as we move through it and don't stay in that place. I can testify to the strength of denial, and I can certainly say, from my experience, that it is very important to overcome it if you're going to help your loved one. It's something you must battle through and get to the other side. Dr. Bob: I think that's so powerful, and, I guess, recognizing that it's happening, being open to recognizing that, and that it's normal, and you don't have to rush yourself through it, because it is a process, but if you're not aware that that's what's happening, then it seems like it's the reality and it's appropriate, and would be much more difficult to get through it and be of support as you ultimately want and need to be, so ... Debbie Ziegler: Particularly if the patient gets to the point where they are out of denial. Many terminally ill people quietly, but firmly, believe that they have a pretty good handle on how much time they have. Something inside them says it's not going to be more than a few months, but they, if they're surrounded by people who are in denial, they have no one to discuss that with. They have no one to say, "Look, I'm dying." My daughter, because of her youth and because of who she was, said to me in the hospital one night, she was in her bed, and I was climbing on to a gurney next to her, and she said to me, "Mama, you get that I'm dying, don't you? I need you to get this." It just ripped my heart out, but at the same time, I realized, "Oh, my goodness. I have to look at this. I have to turn around. I have to stop running and pretending that I can find some miraculous doctor in some other country," which is what I was dreaming of at that point. "I have to turn around and look at my child who is telling me, 'I'm dying.' I have to be with her in that moment." I'm telling you, it's hard, and I'm also telling you it's really important for the patient, really important for the patient to be able to say, "The people that love me get it. They get it. I'm dying, and they get it." Dr. Bob: "And stop wasting my time." Right? "I'm-" Debbie Ziegler: Yes. Dr. Bob: "Be here with me, because we don't have a lot of time for what we need to do." Debbie Ziegler: In her case, she wanted us to listen to what her desire was for the rest of her life, what it was going to look like, because being told that she had about six months to live, Brittany immediately sprang into her list of, she had a bucket list of places she wanted to visit. She had a list of people she wanted to talk to before she died. She had a list of accomplishments that she wanted to be able to be a part of, which included, in the beginning, she wanted to write some articles. She decided she wanted to write articles because the medication she was on to keep the pressure in her cranium down from this gigantic tumor causing this pressure, she was taking a lot of steroids, strong steroid medication, and steroid medication at that level has some pretty gnarly side effects. It makes you get this round, very full face, which they refer to in medicine as a moon face. Brittany thought, "All right, because I don't want anybody taking pictures of my moon face, and that way, I can write an article and still have an impact and advocate for other terminally ill patients, but I won't be seen." Then as it turned out, and as many people know, that is not the path that it took, and she was asked to have her photograph taken, and then she was asked to be filmed, and then she was asked to be interviewed. All of this was done when Brittany didn't look like Brittany anymore, and she cried, and she said, "I just see cancer in that face. That doesn't look like my face. That looks like the face of cancer." I know what a sacrifice she made to do this for people. We talked about how it was normal at 29 to feel feelings of vanity, yeah, a little bit, as you're a woman and you don't want to look bad, and how she was going to overcome that. Of course, as her mother, I kept saying, "You're so beautiful, Brittany. You are still beautiful. It's just a different beautiful." She would be like, "Oh, Mama, you're my mom," but I just want people who are ill to know that those last six months that my daughter had were some of the most productive month of her life. She had a sense of urgency and joy. In between sadness and terror, there were these moments of great joy and satisfaction, as we walked through a particular place in nature that spoke to her. She'd call me, "Mama, come and look. Come and look at the banana slug. Come and look at the starfish. Come and ... " We shared those moments of joy because she faced her illness, and she was not going to waste that time. That required decision-making. That required saying, "No," to some treatments that she felt, after reading about them, we're not going to buy her any significant amount of time, and while she did those treatments and did not receive significant time, the treatment itself was going to deteriorate her lifestyle. Her quality of life was very important to her, and she said, "If I'm not getting any measurable upside here in the way of extended life, then I need to be looking at the quality of the little life that I have left," and so she remained focused on that, and she remained strong in the face of some pretty persuasive and, in some cases, almost bullying that went on in the medical system of, "You must do chemotherapy. You must start it on Monday." Even her oncologist, after doing DNA testing, told Brittany, "You aren't a good candidate for chemo." She said, "Your DNA, your markers, are indicating that you're not a good candidate. There's a very, very small percentage of chance that chemo would do you any good, and there is some chance that chemo could actually make your tumor grow faster because you have a glioblastoma now." Dr. Bob: Certainly, it would deteriorate her quality of life, which she knew, and yet still there were physicians who were part of her team who were pushing her. Debbie Ziegler: Definitely pushing that. She stayed with her oncologist, who she felt understood chemo the best more than the surgeon, and she said, "Your own hospital just wrote a paper about chemo not always being the right answer for the brain tumor patient, and so I'm saying, 'No.' I know that you know this within these halls, and I'm not going to do it. It doesn't have enough of a possibility of upside for me, and it has a definite downside that's very well known. The symptoms that will take away my ability to do some things that are very important to me," one of being that she wanted to travel to Alaska, and she wanted to ride in a helicopter in Alaska and land on a glacier. She wanted to go on a dog sled and cross a glacier. She wanted to move in a dog sled on a glacier that was moving on a planet that was moving in a solar system that was moving. We wanted to be moving in time and space, and we did it. Dr. Bob: That's wonderful. That's awesome. Debbie, at what point, at what point after the diagnosis, did the whole concept of medical aid in dying come into her awareness and start becoming a bit of a focus? Debbie Ziegler: For Brittany, her focus on aid and dying came much more quickly than anyone else in her family, because, at Berkeley, she had been in a psychology class where they had had a discussion about end-of-life options. Her class had heatedly argued about end-of-life options, and so Brittany had already thought about this, discussed it, and, quite frankly, been a participant in a conversation at a high level. As soon as she was told, and she did ask directly, none of her family could or would, because we were all in denial, she's the one that forced the conversation and said, "Is this brain tumor going to kill me? Is this a terminal brain tumor?" She was told, "Yes, it is terminal. At this point, until we have tested this cell structure, we don't know how long, but we do know this is what you will die of." As soon as they told her that, she began discussing end-of-life options. She did not know how long her life would be, but she did know that the tumor was going to take her life, and she knew enough from her science background of the course of action that a brain tumor takes that she knew she wanted to be looking into other options rather than just following a natural course. Dr. Bob: How fortuitous for her, not maybe fortuitous at all, but that she had had, been exposed to it. Debbie Ziegler: Yes. Dr. Bob: Not a lot of 28, 29-year-olds are- Debbie Ziegler: No. Dr. Bob: ... and so it could have been a very different process, and path had that not happened. Debbie Ziegler: The way she introduced the topic into conversation was, I think she was trying to spare us until she could discuss it with her parents, but she said to the doctor, "How can I get transferred into the Oregon medical system?" That, of course, to everyone in the room, seemed like an odd question, and in the back of my mind, because I am a science teacher and, of course, had read articles, I thought, "Oregon. Oh, my goodness. I know why she's talking about Oregon." I couldn't have told you the details, but I knew that it had to do with the right to die, and I knew what she was talking about the very first time she mentioned it. I knew where she was going. Within seconds, there were two people in the room. I'm sure the doctor knew what she was talking about, although he chose, at that moment in time, to not recognize it, to say, "Well, why would you want to do that? You're in a fine medical system here in California." It wasn't until days later that we had open conversations about why she was interested in Oregon. Of course, since that time, California has passed an End of Life Option bill. I feel that that is my daughter's legacy. I believe that it was her story of having to move out of California in order to die, in order to die peacefully, that touched a lot of hearts and made history in California. I smile when I think of our End of Life Option Act because, in my heart, it's Brittany's act. Dr. Bob: Well, it was Brittany's act, but she couldn't have done it without you. Right? You- Debbie Ziegler: She- Dr. Bob: You were her partner in that. Debbie Ziegler: She had help, and she had many, many volunteers who loved her, who loved her spunk, her feistiness, her story, who immediately gravitated towards supporting her. I have had letters written from all over the world, from all over the world. I now speak with people in an ongoing relationship, some of whom I have met face to face now, and some of whom I haven't, from countries all over the world about Brittany, and some of these faithful people write me every time it's her birthday, every anniversary of her death, every anniversary of the bill being passed, and they tell me how much my daughter means to them, and that they live in a place where there is no law, and that she stands for hope to them, that she stands for hope that one day, all of humanity will treat each other with love and kindness and will not be so afraid of death. It's such a beautiful legacy that it helps me accept that she's gone. She's gone physically from me. Those first few years, grief was so difficult, and I've met so many grieving people, and as I was grieving, I would literally be knocked down to my knees sometimes. I'd be crying on my knees in the hall, or in the living room, or in the kitchen, or one time in a park, another time in a store, like a T.J. Maxx. Here's this lady down on her knees, crying. I would always smile through my tears and know that Brittany would be saying, "Get up. Get up, right now, because you're on your knees crying. It means there's something that needs to be done. Look around. See what needs to be done." The first time, I got up, and I thought, "Oh, my goodness. I just opened an email about how dire the blood shortage was," so I went and donated blood, and now I try to donate blood twice a year in Brittany's name. I pick times of the year when that is hardest for me. I pick the times of year when I know the grief is going to wash over me again. Times, holidays, her birthday, the day of her death, the beginning of the year. I pick times to do the donations when I know that giving blood is going to be this beautiful gift that's going to lift me out of my sorrow. Then I look around and see other things that need to be done. I see an elderly person that needs a visitor or flowers. I see a friend who needs a visit who is fighting breast cancer. When I go into my worst grief, I always hear her saying, "Get up and look around. There must be something you need to do." That is one of the ways I've dealt with grief is by getting up and looking around. Dr. Bob: And doing what, and doing what is- Debbie Ziegler: And doing something- Dr. Bob: ... right there, immediate, in your awareness. Debbie Ziegler: Yes. Dr. Bob: I'm going to, so can we stay with this for a moment? Debbie Ziegler: Yes. Dr. Bob: I know that I've been with you, and you've shared some of your other tools, tips, ways of working through the grief. Debbie Ziegler: Grief, yes. Dr. Bob: I think I would love for you to share if you're up for it, a couple more, just a little bit more about how you've managed to work through your grief or work with your grief as a guide here for some of our listeners. Debbie Ziegler: Well, in the beginning, I have to admit that grief was like, it was a black ocean sucking me under, and I thought, "If I don't do something, I'm not going to make it." I really, first of all, I admitted this to the people I loved who began searching for things that might help me. My sister came to me with a treatment that's called ... I don't know the letters for it. I think it's PTSD, but it's an eye treatment. Dr. Bob: Oh, EMDR? Debbie Ziegler: EMDR. Dr. Bob: Emotional freedom release, yeah. Debbie Ziegler: It is EMDR, and it's rapid eye movement treatment. Because I told people, "I can't talk my way through this. Talk therapy is not going to be enough. I can't do this." This is a scientific treatment where you are asked to follow a light with your eyes. I was probably the most skeptical person on earth that it would help me, but it did, and rather rapidly. It took me out of this circular, negative thinking that I had. I had a few broken records that revolved around Brittany's illness and Brittany's death, and those records would come on and play over and over again, and this treatment of causing my eyes to move while I thought about this, or while I thought about a very stressful day or the actual day of her death, while I thought or discussed about that, my eyes were moving, and it causes your brain to use both sides, the right and left, and your own brain helps you heal and stop that broken record from playing. That is one treatment that I feel very strongly about. I also used the treatment of touch, of various therapies that have to do with massage and different types of massage, to kind of work the tightness that was in my muscles. After being with Brittany and anticipating her death for six months, there was a lot of muscle difficulty, and so I used that. I also have a sister-in-law who sent me ... I also have a sister-in-law who sent me various scents, an aromatherapist, and she sent me a mister. She sent this to us before Brittany died, and Brittany used it all the time to help her try to sleep. That was a difficult part of the last month of her life was getting any sleep, so both she and I used aromatherapy, which is another thing that I sort of, as a scientist, was sort of like, "How can I possibly help?" Yet- Dr. Bob: It did. Debbie Ziegler: It did. In fact- Dr. Bob: Undeniably. Debbie Ziegler: ... my daughter said the two therapies that helped her the most, she said, "Look at all the doctors we've been to, Mom. Look at all the specialists, the high-paid brain surgeons, neurologists, oncologists," and she said, "Look what I'm down to in the last weeks of my life. I'm down to massage and aromatherapy, and these are the two things that soothe me and help me." She used them right up to the end, and she developed a relationship with her masseuse, and she developed a relationship with my sister-in-law, who sent the aromatherapy. Along with these treatments came this human touch and caring that's so important. Dr. Bob: You're singing my tune. I mean, those are the things, of course, that we try to, and it's just, I didn't know that about Brittany's- Debbie Ziegler: [inaudible 00:35:07]. Dr. Bob: ... about what brought her comfort, so it was really, it's, I guess, confirmation, more confirmation about how incredibly valuable these therapies and are ... Not to throw out every other treatment that is being offered through the traditional medical system, because sometimes those are very important, but the value of some of these- Debbie Ziegler: Simpler- Dr. Bob: ... high-touch- Debbie Ziegler: ... natural- Dr. Bob: Yeah. No side effects. What are the side effects of massage therapy? I'm so happy to hear that that was comforting for her, and also for you, afterward. Debbie Ziegler: It was, and we would go together, and friends would send her massage gift certificates. It was a way for them to reach out to her and to give her some solace. We had a special place that we went to and a special group of women who knew her and knew our story, and so it was a safe place that felt safe to go to, and ... Dr. Bob: And that connection. Right? The connection that she made, which was not, didn't revolve around her illness. Debbie Ziegler: No. Dr. Bob: It wasn't going to get a treatment or for someone to check and see how she's progressing. It was a human connection, which people at all stages need, and when we can provide that, it normalizes things. It enhances the feelings of well-being, so this is another pretty powerful reminder of that. Debbie Ziegler: The people that worked in the area that we went to, which was Portland, Oregon, we went to a place there, they never questioned her. They never argued with her. They just said, "How are you today? Where do you feel that ... Do you have places that we need to concentrate on? Do you have places where you have some knots in your shoulders, you just want ... How much pressure?" It was all about, "What feels good to you, Brittany, today? Because we just want to send you out of here feeling a little bit better than you came in." There was no lofty goal to cure cancer. There was no lofty goal to fix this girl who had this gigantic brain tumor. It was just, "From where you start to where you leave, we promise you're going to feel a little bit better." Dr. Bob: In that moment. Debbie Ziegler: And she did. Dr. Bob: Yeah. Debbie Ziegler: And she did. Dr. Bob: That's wonderful. Debbie Ziegler: Yeah. That's a beautiful thing. Dr. Bob: We talked a bit about some of the ways that you moved through grief, which I'm sure part of that was what you, basically what's become your life's work as well. Debbie Ziegler: That was very fulfilling. To be able to testify was very fulfilling, and I felt that my testimony came from a place that was a little bit extraordinary in that, as Brittany's mother, this was not my first choice. This was not; I did not readily gravitate to this end-of-life option idea. I stayed in denial for a period of time. I had to work through this in my head. I had to analyze some childhood beliefs that I grew up with in Texas, so when I spoke with senators face to face, or representatives face to face, and they were reticent, or they had some childhood religious beliefs that were kind of interfering with their ability to even hear Brittany's story, I could relate to them, and I told them that. I told them, "I was you. I was you. The look on your face, my poor daughter had to see. I see you avoiding this subject. I see you turning away from death. I see you turning away from this idea. My daughter had to watch me do that, and that must have been so hard for her to have her own mother not be able to discuss it, to be in denial for a period of time." I felt that my testimony was from a place of, a commonplace that we had, and I felt that in some cases, minds were able to change, or people were able to look inside and say, "Hey, maybe I do need to look at this a little, from a little bit of a different angle." I felt that that was an important truth that I could share was that I didn't start out all gung-ho about this. I knew what she was talking about, and it scared me to death. It really did. It's an important common ground that we had. Then as I went on and spoke in different environments and different countries, I recently came back from Africa, where I spoke at a conference there where people from 23 different countries met in Africa to discuss our human right worldwide to die peacefully when we are terminally ill, to seek a peaceful death. It was very empowering to meet these people who are; literally, you could almost feel the room vibrating with the love and excitement that these people have about making the end of someone's life more tolerable. Coming back from something like that is just, infuses me more with energy and confidence, and inspires me that this is important work, and that I believe that sharing the hardest parts of how it happened and the hardest parts of what we went through in the public eye and as a family who really didn't have very much of a help and assistance ... In fact, we kind of had to claw our way into a situation where my daughter could use the law. I feel like telling those hard parts and just kind of opening my kimono and letting people see the pain, that maybe they will have confidence when, and if, something happens in their own family, that they can say, "Oh, I read about this one time, and you know what? She was in denial, too. That's what I'm in. I'm in denial. I recognize this." Maybe it will help someone get out of denial. Maybe it will help someone not feel so alone. Maybe it will help someone support a patient and say, "What do you think? You are the one who's dying. Let's make a plan, your plan, your plan, because this is your life, and I want to hear what you want to do." Maybe it will help someone look into the patient's eyes instead of running out of the room and making phone calls to try to make something that can never happen. I just, I think that if we don't tell our story and share the humanness of dying, that we're not going to move forward. The more we keep hiding and not talking about it, the less likely we are to be able to face the end of life, which should be a beautiful time. My daughter showed me that. She showed me that, "Yeah, Mom, it's not always beautiful, because I'm 29, and I'm pissed off that I'm dying, but in between being pissed off, I want to live, and I want to experience joy, and I want to go places, and I want to meet people that I haven't seen in a while, and I want to finish things. I want to feel that I've finished some jobs and some relationships and before I go." She wanted a plan, and I think a dying person's plan, no matter what it is, because it may not be what you, as their relative, want it to be, but their plan is really all they have, and so let's support that plan. Let's talk about that plan and what it's going to look like, and how are we going to get it put in place. I think people don't plan. They wait too late. A hospice is called, sometimes, too late. People end up saying, "Oh, I want to use the End of Life Option Act," but it's too late. They haven't left themselves enough time to get the prescription, to write the letters, to wait for the waiting period. The more we can normalize this and discuss this with our families, with our loved ones, with our friends, the more they can plan and make a good plan, and we can help them put that plan into place, but it's not our job to make the plan for them. It's not our job to get in there and say, "Oh, you need to do this, and you need to do that." We need to stop. After they've been told, "You have a terminal illness," we need to slow down a little minute, and we need to absorb that information with them, and then we need to listen. "What do you want to do? How do you want to live these last months?" It can be beautiful. Dr. Bob: And, "How do you want to die?" Debbie Ziegler: Yes. "How do you want to die?" Dr. Bob: "How do you want to die?" Wow. Okay. I think we came to a beautiful place to pause. You and I are not done with our conversations. Debbie Ziegler: No. Dr. Bob: By a long shot. Debbie Ziegler: California's not finished with this conversation, and I think we're committed to- Dr. Bob: Co-create it. Debbie Ziegler: ... making the best of this that we can. Dr. Bob: Yeah. There's a lot of work to be done. There's a lot of lives to support, and so we will have, you and I will have more conversations, and I would love ... I know we talked a bit about what came out of this conference in South Africa. Another podcast devoted to that would be wonderful- Debbie Ziegler: That would be great. Dr. Bob: ... because that would be very educational for people to see what's going on in the rest of the world and what we have to aspire to. Can you share how people can read more about the story and get more information about you and Brittany? Debbie Ziegler: Oh, the book I wrote about Brittany was published by Simon & Schuster, and it is available on all the major online vehicles that you can buy books, I mean, every single one. Amazon, all the bookstores. The title is Wild and Precious Life. I hope that when you read it, it will make you want to live a wild and precious life, because we just have this little bit of time, and we might as well make it wild and precious. I'm Deborah Ziegler, Brittany Maynard's mother. My greatest achievement in my life, my daughter, who I love dearly, was a great model of living a wild and precious life. I would urge you to read her story and benefit from it. Dr. Bob: Yeah. I agree. I second that wholeheartedly. It's a wonderful story. It's hard to read, at times, for sure, but it is a, it's well worth it, and I think you'll gain some really great insights. Thank you for writing it. Thank you for all that you do. Thank you for being here. It's an honor. Debbie Ziegler: Thank you.…

A Life & Death Conversation with Dr. Bob Uslander

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Understanding Palliative Care, Dr. Michael Fratkin Ep. 29 58:42

πριν 6 years58:42

58:42

Dr. Michael Fratkin founded ResolutionCare to insure capable and soulful care of everyone, everywhere as they approach the completion of life. Learn how telehealth applications are bringing a greater quality of living and dying to those in need. Contact ResolutionCare website Transcript Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Please note there is some content that is explicit in this episode. Dr. Bob: Dr. Michael Fratkin is the President and Founder of Resolution Care. Dr. Fratkin is a father, a husband, a brother, a son, a physician, and a very dear friend of mine. Dr. Fratkin is dedicated to the well-being of his community and the community of all human beings. Since completing his training, he's made his home and built his family in rural Northern California. He's served his community as a primary care physician in the community health system, as a medical director of the local hospice, as a leader in the community hospital medical staff, and has been a transformative voice for improving the experience for people facing the end of life. At a time of great demographic and cultural change in our society, Dr. Fratkin has created Resolution Care to ensure capable and soulful care of everyone, everywhere, as they approach the completion of their life. Resolution Care is leveraging partnerships with existing healthcare providers and payers to provide telehealth services that bring a greater quality of life and greater quality of dying. The palliative care team at Resolution Care openly shares their expertise and mentorship so that people can receive the care they need, where they live, and on their own terms. In this podcast interview, Dr. Fratkin shares his passion and his intimate experience as a provider of care. He's innovative; he's creative, he's dedicated beyond what I've experienced with just about anybody else who I've communicated with about palliative care and end-of-life care. I think you're gonna find this podcast to be incredibly informative and really interesting. Okay, Michael, thank you so much for taking time out of your day. I know you've got lots of irons in the fire and lots of people vying for your attention. So I really appreciate having time to connect with you. Yeah. You know, it's interesting. I always enjoy talking with you. We connect sporadically, not as much as either of us would probably want, but we have been pretty consistent in finding times to connect and catch each other up on what's happening with our lives and our different enterprises. And what's interesting is, after our conversations, I always think to myself, "I wish other people could have heard that. I wish other people had a chance to listen in and hear what we're developing, and sort of the passion that comes out in these conversations." They're so informative, for me, and I find it so inspiring to hear what you're doing and the service that you're providing and creating. So today we have that opportunity so that people are going to be able to listen in on our conversation. In the introduction, I shared a bit about what you're doing, who you are, but I'd like to have you just do a little synopsis of what Resolution Care is doing currently, where it started from its humble beginnings, and what your vision is for where this is heading. Dr. Fratkin: I'm a dad, I'm a husband, I'm a brother, I'm a son, I'm a whole lot of stuff. But I'm also what's called a palliative care doctor. And your group of listeners probably know a little bit about what that is, but the way that I describe it for people is that there are really three central elements. That number one, we don't take care of any patients. We support people as they find their way through serious illness. We support people with a team; we support their families. Our team includes nurses, doctors, social workers, chaplains, nurse practitioners, community health workers, and all the people that they don't necessarily see, but that are just as important to creating a container for our care, the back office, and operational people. So the first principle is, is that we are a person-centered, not a patient-centered, but a person-centered initiative. And that those persons, the reason I distinguish it ... It's not just the patients or their families, but the people providing the care that are centrally important to everything that we do. And then we build out from there. So the first thing is, we're a person-centered organization, using a team to accompany people with serious illness as they navigate it, right? Dr. Bob: I love it. Dr. Fratkin: So the second thing that we do is that we're really damn good at managing symptoms. Our team has quite a bag of tricks around the treatment of pain and nausea, breathlessness, and various other physical manifestations of illness. And we know how to use that bag of tricks. So symptom control is the second thing. And the third thing is, we help people and their families to navigate what is a completely dysfunctional, fucked up if you don't mind me saying so- Dr. Bob: Let's call that like it is. Dr. Fratkin: Of fragments and silos and conflicting interests, and stakes held. We help people navigate, somewhat, through the complications of their illness, but more so, we recognize that people are trying to make their way through a human experience, not a medical one. And so, we help them navigate through that, bringing the personhood that we are to accompany them with the wisdom, skills, and shortcuts and strategies that we know about navigating. So it's person-centered around the people we care for and us as well. We matter, too. It's impeccable symptom control, and it's navigational assistance. And really tough times of life in a really complicated health care system. So Resolution Care does that. And we use some technology tricks, video conferencing, all of our care is based in the home. And that's that. But I think I also wanna tell you about how I got here and why. Dr. Bob: Please do. Dr. Fratkin: So I came to far Northern California, Humboldt County, in 1996 and joined a community clinic environment as the only internist in a five-clinic system. And my job was to take on all the patient V patients and all the complicated conditions that provided kind of complex case management approach for the heavy hitters, the outliers, the hot spotters. They're called lots of things now, but they were just languishing without the attention they needed when I showed up in town. And for six years, I took the hardest cases in the system, and helped with diagnosis and treatment planning, and burned out rather quickly, because I didn't have a team. I then sort of shifted my attention to my deep connection with hospice work and became a hospice medical director, where I did have a team. But I also had a very constraining box around me, a structure of hospice defined by the Medicare benefit that was limiting our ability to do what made sense, rather than meeting all of the regulation and compliance that continues to accumulate in the hospice model of care. And I burned out again. And then, I did some hospital work. When I started, I was seeing 9-12 people in a day, and I really enjoyed being at the point of the sphere where people were sick enough to be hospitalized and to attend to them both with good medicine, as well as a respect, and frankly, love in the face of what they're going through. And that was great until they started to push me to see 15 or 18. And now, it's 22 patients in a 12-hour shift. And I burned out again. And all the while, paying attention to the rising credibility and relevance of the palliative care movement. So I became first certificated in 2000, and board-certified a few years after that, in palliative care. In 2007, I worked with the hospital to launch a guided care consultation service in the hospital. And as soon as I got started doing that, there was almost immediately, four or five times as many people as I could care for. And I wasn't able to scare up the resources in the hospital to build out a team. So for a period of years, I wrote business plans, I went to committee meetings, I tried to advocate for greater resources to do this good work correctly, and failed to do that. So in 2014, I had had it. Exasperated, fatigued, burned out, I guess for the fourth or fifth time. God knows I can't keep track. I was looking for a job. I figured I couldn't stay here in this beautiful community, because I couldn't figure out how to get a sustainable job with a team that builds capacity over time. And so, I looked for work. And as you know, Bob, a palliative care doctor these days doesn't have to go too far to get too many interviews. I had three interviews in three weeks in the Bay area, and on the way to the Bay area. And they offered me three jobs, quickly, were better resourced, better compensated, more controlled work hours, but none of them were where I lived, where I made my home, where my kids were born in my house. I live on this five-acre piece of redwood forest. My kids were born there. My dogs and cats are buried in the yard. And I didn't wanna leave. So come around spring of 2014, I started to think about maybe there's a way to build capacity, build a team, and share what I know to others so that they could make that work for the people they're caring for. And so, the three ideas were video conferencing, Project Echo, which we could talk about later, it's a telementoring structure that allows a specialist to share information to primary care providers, et cetera. We can talk about that later if you want. And then the third thing was crowdfunding. So in November 1st or 2nd in 2014, we launched an Indiegogo campaign and based on all of my relationships in the community and people's trust in my work, we were able to raise $140,000 in a little over a month. And in January 2015, myself and one other person walked into a donated office space and turned on the lights. Dr. Bob: What a great story, and a great confluence of ... And you being true to your vision, being true to yourself, to what you knew was the absolute right way to practice the ... And you took a risk, right? And you continue every day, taking a risk. I know it. We've had these conversations. I'm trying to remember when we first connected because I've watched this thing go from birth to flourishing. And flourishing may not mean the same thing to you that it does to me, because I know your vision is grander. Dr. Fratkin: Well I know where we met. We met around ... There's a group in San Diego of one old-timer, one mid-timer, but some folks that have been inspired for more comprehensive cancer care in the community for a long time. A fellow by the name of Dan Vicario and the dear, dear friend of mine. I call him my grand brother, Paul Brenner, a psychologist with a deep connection. A psychologist and physician with deep connections to really thoughtful and complete approach to people with serious illness. And it was through them that they connected me to you. Dr. Bob: Right. And I remember that part very clearly. And I've had the honor and the privilege of collaborating on patients with both of them. And it is really; it's magical to be part of that with all of their combined years of wisdom and their just beautiful energy. But I'm trying to remember the stage that you were at. It was probably early on, and- Dr. Fratkin: It was probably in 2015. And without getting too wonkish about enterprise development so that we can get to the topic at hand, 2015 was the year of getting rolling and getting the team. And we did that. By September, we had a nurse, a social worker, chaplain, and office staff, as well as a little bit of a head of steam, with a group of patients. 2016, we really started to grow. And 2017, we continued to grow and sort of learned how to be a business that was sustainable. And coming into 2018, I'll just tell you today, Resolution Care network is tending to about 164 people in their homes, from the Oregon border to the north, the Pacific Ocean to the west, all the way to the ... I guess it's the Idaho/Nevada border to the east, south, pretty much to the Bay area with a couple of other folks a little bit further south. We've got 29 employees. We have contracts with four health plans. And we're making an impact with this model of care that we're developing. Yeah. Dr. Bob: That's beautiful. And of those 164 current patients, how many of those are receiving physical ... Are you able to get to visit physically, versus doing it entirely through video conferencing? Dr. Fratkin: It's variable. The key element is, is we really do what makes sense. So if a person lives down the street, it makes sense just to drop in and see them and sit on their couch and eat their cookies and chat with them that way. If they live 150 miles away from HQ, we're much more likely to engage with them by video conference. And it's really ... That's kind of what we built into the model. It's a hybrid model, both boots-on-the-ground, face-to-face encounters, with teleconferencing or video conferencing. And we do that in a really nimble fashion so that there are some people who really can't wrap their head around it. And if they're close enough, we provide them with a more traditional home care model. We have people who are right down the street who are very comfortable, in fact, prefer not having somebody knock on the door and walk into their house, but prefer to control the framework of the encounter. And then, different specialties. For my fellow providers and me, we're probably in the 85-90% video conferencing channel. Our nurses are probably in the 50-60% of their direct encounters are done by video. Our community health workers, the other end of the polarity, do very little video conferencing, because that's kind of what their value proposition is, is to be right there in the home with time and engagement to suss out what's needed. Our community health workers extend the reach of our doctors, our nurses, our social workers, and our chaplains. And they're given a lot of room to figure out what makes sense for each person and their family. So it's a variable ratio of boots-on-the-ground to remote engagement. Dr. Bob: Right. And what's cool about it is each situation is unique, and it probably changes over time as well. And I think it's fascinating; the different disciplines have the option of doing it whichever way makes the most sense for the provider as well as for the patient and family. Dr. Fratkin: For sure. At an organizational level for organization people who might be listening, it makes such great sense to use the technologies to eliminate the inefficiencies of travel. What's interesting ... I think we've talked about this before, but when I started to do initial consultations with people, first encounters to carry the arc of ... Oh, there are 8 or 10 elements that I've gotten accustomed to, to feel complete within an initial encounter. When I did it in a clinic setting, or at home, it was a 90 to 120-minute encounter, easily, and really exhausting. But when I started doing those same initial encounters by video conferencing, over and over and over again, they came to a place of completion in about half the time. Dr. Bob: Why is that? Dr. Fratkin: I think it's because we are primates. I think that when you walk into a person's home, there's a whole lot of social primate behavior. There's a whole lot of framing that includes so much more than just the relational engagement, one-on-one, with another person. There's the environment; there's the space, there's how the person feels about inviting a person into their home. There's their level of attention to, let's say, housekeeping, or their level of anxiety about how much energy they have to do housekeeping. There are the dogs; there's the feeling like you're hosting a doctor in your home, or a social worker, whoever. There are the elements of ... If you're really, really sick, maybe you just didn't feel like taking a shower this morning, but the doctor's coming, so you have to put yourself through a whole preparation mode. All of those things are, frankly, in the way of a relationship of trust. They're complications. So I've come to accept that actually doing care virtually is better than real life. Dr. Bob: Fascinating. I find that fascinating, because I do some care, some visits remotely that way. The vast majority, 95+% of them are in patient's homes. So those social, primal, primate behaviors, to me, I find those really endearing. And I think it's almost like a friendship is developing at the same time as a doctor-patient relationship. But I'm not seeing the same volume as you, so I have the luxury of being able to do that at this stage of the game. Dr. Fratkin: I think that's true. I think there are some other things that are hidden in plain sight that relate to it. I'm sure you'll agree that one of the great challenges for hospice work, palliative care work, complex conditions, where people with huge loads of social challenges with sensitive, inspired, caring caregivers and healthcare professionals ... One of the greatest challenges to this work is learning about the nature of boundaries. It shows up in every hospice organization, every palliative care organization, in the hospital, where people get confused about where they begin and where the people that they're attending to begin, or where they begin and end. The I and Thou, to quote Martin Buber. That is very interesting and hard to teach. The way that most of us learn is that we screw it up. We get caught up with the other person's energies. We end up feeling we must keep them pleased. We don't necessarily ... Well, here's the teaching metaphor that I use. I'll see if I can create a visual of this for you and the listeners. Bob, do you remember way back when, in the dark ages, when you took Physics? Dr. Bob: Yes, vaguely. Dr. Fratkin: Vaguely. And do you remember studying the components of an electronic circuit? Dr. Bob: Even more vaguely. Dr. Fratkin: Okay. Things like resistors and transistors. Dr. Bob: Capacitors. Dr. Fratkin: Capacitors and stuff, right? Now, I bet you don't quite remember. Maybe you do. You're a smart guy. What a capacitor actually is. Do you remember what a capacitor is? Dr. Bob: In the interest of time, I'm gonna let you- Dr. Fratkin: That's good. Good call, Doc. A capacitor is this: it's two plates. Imagine tiny little squares. One of them's a positive, anode; the other is the cathode. I think that's right, a negative. And they sit inside of a circuit with a proximity to each other and a surface area. And the closer they are together, and the more surface area they have in association with each other, the higher the capacitance. Whatever the stuff of capacitance is that contributes to doing what's needed to an electronic circuit, which is way above my pay grade, is proportional to the surface area and the proximity. And I think that that's better than thinking about staying professionally or technically detached from the people we care for. What we've built is a system that constructs ... All I'm here to do is to give you the technically, medically best treatment. And I can't really allow myself to engage with the truth of what's going on for you as a human being, because that'll make my hands shake in the operating room. That'll make me not make the right choices on your behalf, or provide you with the right recommendations. And I think what that done is it's alienated healthcare professionals from the people that have medical challenges, right? Dr. Bob: Absolutely. Dr. Fratkin: Professional detachment is a 20th century, obsolete concept. My concept is that what we're called to do, especially for people who are feeling the threat to their very existence, is to open as much of ourselves as we can, create a greater surface area, and have the courage to maintain the closest proximity to their circumstances. To understand what's going on. But what happens with the capacitor ... If the two plates touch- Dr. Bob: Kaboom. Dr. Fratkin: Circuit's completed, and there's no capacitance. If you get caught up in people's shit, then you lose the ability to really create the magic that lives between those two plates in close proximity. In human encounters, I say that it's not capacitance that arises with proximity and willingness to be open. What arises is empathy. And empathy is the secret sauce of understanding how to be of service to another person. But if you're caught up in them, if their happiness or well-being becomes relevant to your own happiness or well-being, then you've completed the circuit, and you lose the capacity to have the perspective of being of service to them. It's a long and involved metaphor. Dr. Bob: Yeah, but it's a great one. It's a great one. I'm gonna- Dr. Fratkin: Here's an example. With your wife ... Or actually, with my wife, being with my wife, not you with my wife, but me with my wife ... We are intertwangled. And we sometimes struggle to have enough individuation to understand what each other needs. But we're necessarily, intimately one. One circuit, my family, right? And so I struggle with different kinds of things there than I do in work. It's not a matter of distance; it's a matter of entanglement. When I, for example, being asked to see a 56-year-old person with a brain tumor and two children, the distance I can get in proximity to him is greater than with an old woman who doesn't look anything like my own life. So I have a little bit more room. Others on my team may be able to step right into tending to that father. But for me, I have to create a little bit less proximity in order to make sure that I don't get entangled in the reality of what's going on for him because it so resonates with my own fears and worries about myself. So I can manage the proximity consciously, and by having a team that has a whole different set of concerns and triggers. There, we're intentionally talking about the distance we can tolerate. The best possible scenario is you're almost touching, but not quite. So we have to manage that consciously, and that is one of the ways that I train people around boundaries. This is a very circular way to talk about what I think one of the great advantages of video conferencing in a frame, is that it's literally a frame around the encounter, around the relationship and development. It's necessarily a division. It's necessarily a boundary. And while I can get very close and understand empathically what that person is having, I'm not sitting on their bed. I'm not reacting to their place on the political spectrum, which may be revealed by their red baseball caps or bookshelf. I'm not struggling with my own biases. They are in their most comfortable place as a person, not having had to prepare, go to a clinic, and deal with the waiting room and all the rest of it. They're just at home, as themselves. And I am similarly in a work environment that I've constructed, that I'm very comfortable with. And so, in some ways, the frame around which we ... within which we encounter and develop a relationship, has this necessarily built-in boundary. And so I think that's part of why, rather than two hours, it takes one hour to get to the same place. And that once people have the experience, it's much, much more comfortable for them than home invasions. Dr. Bob: Fascinating. What's interesting is, I'm assuming ... Correct me if I'm wrong, but I'm assuming that this has all just been learned as you built this. The rationale and the initial inspiration for doing video conferencing, I'm assuming, was efficiency and being able to connect with people who are in more remote areas. I'm sure that you had very little awareness or understanding about all these additional benefits and advantages that you've come to, that you're just describing. Dr. Fratkin: Yeah. Well, just like I don't have any idea what benefits and nuances and subtleties I'm yet to discover over the next few years. But yeah, you're right. I mean, I started because I noticed that I have had this amazing smartphone and that I'm using it to text and to call and to talk to people on the phone and all the rest. But I realized that it was worth exploring, whether or not a synchronous audiovisual experience with two people in two different places, working on the same thing together, whether that would work. Because I have this crazy, amazing supercomputer in my pocket called an iPhone. So a lot of it was curiosity. I didn't really quite get the efficiencies and the network development until I started playing around with it. The way that I discovered it was, a friend of mine who works at Google told me about a project that came and went over about 11 months, called "Helpouts." And Google had this project where they were setting up a platform that included video conferencing, the "Hangouts" app, a webpage that you could tell your story about what expertise you wanted to share with other people, a scheduling function, a wallet function, and a messaging function, all on one little webpage. And if you had Chinese cooking that you wanted to teach, you could put your page up there, invite people to take a look, and if they wanted to schedule you, they could. And you'd charge them $15 for a half hour or whatever you wanted to charge. If you wanted to help people with their business plans or filling out their tax forms or whatever other expertise you might wanna share, you were out on the sort of open market, and direct consumer engagement would allow you to do it. So he asked me, would I wanna do it for palliative care. And I said, "Yeah, sure." So I spent two hours throwing up a little thing, and within a month, I had five people reach out to me. And the first person that did was a woman who was in a hospital in the Bronx, in terrible pain, from a metastatic cancer problem. And she was miserable and interested in talking. So we connected, and about five minutes, five seconds, the technology itself disappeared, and there I was, doing my thing. And within 30 or 40 minutes, we're both kind of in tears about the big picture of things. And it was really clear that some basic fundamentals of managing her symptoms would make a big difference. So I got her permission to reach out to the hospitalist tending to her. He was willing to talk to me. I told him, "Do x, y, and z." And the following day, she was discharged from the hospital. And I connected again, and she was so grateful for that advocacy and the difference that it made in her life. And I knew that this could so work. Dr. Bob: Yeah. What a beautiful story to spearhead and show you the impact. Dr. Fratkin: So it was more about just curiosity of what can I do with this crazy iPhone in my pocket? I hadn't really put it together that I was gonna build a social enterprise called Resolution Care at that point. I was just trying to figure out why are we not using this tool? And so I started using it, and it worked. Dr. Bob: That's great. So hey, I have a question. You and I, we're both palliative care physicians. We both specialize and are passionate about bringing people the best possible and holistic support to deal with their struggles and their challenges. And we know what works, right? And anyone who's involved in palliative care understands the value, sees the value on so many levels. On the human level, the financial level, the social level. Why are we having ... Why do you think we're having such a hard time getting traction and seeing palliative care become what it needs to become? Because you're working within the system. You're working with insurers, and you're working with the whole Medicare and insurance billing component, as well as contracting. What's your take on it? What's going on? I know it's a big question. And it's not a simple answer, but I really wanna hear your thoughts on it. Dr. Fratkin: Yeah, no. I think I would probably disagree with you. And only because- Dr. Bob: That's good. I'm happy to hear that, too. Dr. Fratkin: Only because this morning I happened to have a little bit of perspective. I don't know why that is. It might be just; I hit the number of cups of coffee just right. But I think what I would say is it's happening at an almost spectacular pace. It's amazing what's occurred for our society as it relates to our mortality in the last few years. That there's a transformative change in the public conversation around death and dying. I just happen to be pretty well-timed to get up on my surfboard and ride that wave, while also contributing to that wave through having conversations like this one. But let's go back to 2014. In 2014 in October, the Institute of Medicines Dying in America study, the second version was published. It was, I think, 10 or 11 years after they did it the first time, where they did a very deep dive into how people in America finished their lives. And what they basically said in that report was it sucks, and it hasn't changed in 12 years. It talked about how much bias there was and how little capacity there was for palliative care in cancer patients. But they also talked about the aging population, the demographic shifts that are intensifying this sort of tsunami, silver tsunami of people with a greater burden of illness, and the cost of health care, and the absence of focused and targeted support structures for people as they completed their life. And they said, "Why hasn't it changed for 12 years?" A month later, Atul Gawande published "Being Mortal," a blowout success that surprised even him, about bringing this conversation to "How do we die in America?" To a more narrative discussion. And you and I, in our field, we've been talking about these issues for 20 years, maybe longer. And I ask myself ... Well, actually, when Atul Gawande presented to the American Economy of Hospice and Palliative Medicine in 2015, he was interviewed by the Philadelphia Inquirer. And before his presentation, he says, "Gosh, Dr. Gawande, you have this blowout New York Times bestseller. Everybody's reading your book. What are you gonna tell all these hospice and palliative care doctors when you talk to them tomorrow?" And he said, "Well, I'm gonna say thank you. And I'm gonna ask the question, 'Why haven't they been listening to you?" And I was disappointed the next day when he actually didn't ask that question. He [inaudible 00:40:34] from his prepared remarks. But I found myself, for the next few days, thinking about that question [inaudible 00:40:42]. Why haven't they been listening to those of us that have been doing hospice or working with death and dying, working with families very closely, learning what brings value to them? Why haven't they been listening to us? And I think the answer is that we were talking to ourselves, talking to each other, thinking in terms of big health care delivery systems and academic papers and elevating our own careers through the accumulation of initials and prestige and all the rest. The academy of hospice and palliative medicine was academic, an ivory tower, and not really directing its attention outward. And I told Gawande, his voice was completely outward-directed, and it wasn't because he was such a great doctor. It was because he was a son. And being mortal, he's a clueless ears, nose, and throat surgeon who was getting it wrong. Then he, as a son, experienced the challenges that his father faced. And that transformed his perspective as a physician. So his story of conversion was related not to his role as world-famous, world-renowned surgeon. It was related to his role as a son. And so he ... And he's such a brilliant communicator and journalist. Now fast-forward three years later. He is selected by Berkshire Hathaway, Amazon, and whoever the heck, to lead an organization as a symbol of what's possible by thinking out of the box. And as a symbol, that his orientation is grounded, his career has exploded so that he is the leading, most exciting CEO in health care. And he's completely grounded in an understanding of what person-centered care must turn out to be. Dr. Bob: Yeah. That is exciting. That's an exciting development. Dr. Fratkin: And then there's BJ Miller and the traction that he got telling his story as a TED Talk. And then there's Jessica Zitter with her book, called "Extreme Measures." And then there's Shoshana Ungerleider, working in the Bay area, kind of behind-the-scenes, producing powerful documentary films, one of which, "Extremis," was nominated for an Academy Award. But these powerful experiences taking the public into places that we've been populating for decades. The intensive care unit, or the hospital-based palliative care program. And bringing people into that, that wouldn't otherwise look. Not to mention, the millennial spirit of younger people is that they don't blink. They don't avert their gaze at what's difficult. They tend to be drawn towards things that represented shadows for the previous generations. So I think there's a lot happening, that's happening very fast. And in three-and-a-half years, we built this organization kind of on the strength of that, and with the advantage of being an outsider like you, Bob. Dr. Bob: Well, I appreciate that perspective. And hearing you speak, it's inspiring. And it's true. Things are happening. There is a groundswell. I guess my perspective, A) I'm just, in general, a very impatient person. And B) I'm out here in the community speaking. And my of the talks are really focused on older groups, and I still have rooms that are filled with people who just don't really know about palliative care. And when there is palliative care in the community outpatient setting discussed, a lot of times, people have felt that it couldn't fulfill their needs. Because there's A) not enough providers, B) the offerings are not complete enough. And a lot of that has to do with the payment, the reimbursement models. So on the one hand, I do see that we are moving in the right direction, and that's exciting. And at the same time, I'm frustrated because I still ... And as I know, you see this as well. We still see people who are day-in and day-out, struggling, because their needs are not getting met. And we know what they need, and it's just not available to enough people today. Dr. Fratkin: No. It's super true, Bob. I mean, I feel exactly the same way. And for my own psychic well-being, there was a long time ago that I had to make the choice that I wasn't gonna focus on the unmet need or demand as the target of my attention. I was gonna focus on building capacity. And that I was gonna not worry about the fact that I could have burned myself out again trying to deal with one out of four people that I could get to in the hospital. I could have stayed inside of that, like most of us do, just trying to push that boulder up the hill. But what I had to do was to take a risk and say, "For those three or four people I don't get to, in their interest, not the same people but the next three or four or five or six or 12 or 250, it's gonna take some strategic thinking to build capacity." And there are so many sad stories. And as soon as I hear their names or hear some element of their stories, my heart starts to break and be frustrated with them that they don't get the service or don't know that there's a service that would help them. But my focus is not so much on those people; as it is, I know there are so many of them out there that my best efforts are to build capacity to manage and to set the tone of what palliative care capacity building looks like. We believe that it's not just whatever you could cobble together with crappy resources from whoever your institutional home is. Palliative care is best provided by a team of individuals who are well-supported in sustainable, soulful workplaces, but include a nursing perspective, a chaplaincy perspective, a social work perspective, and provider perspective. We are committed to that. So what we provide is actually pretty expensive. And the good news is, is that what we provide delivers to our health plan partners, a three to five x return on investment. Every dollar they spend turns into three to five that they saved. And they can measure those dollars. So they're interested in program development and building capacity for us. We think in the state of California, less than .5% of people who would benefit from palliative care support are getting it. If I focus on that 99.5 % of people who are suffering terribly- Dr. Bob: You'll be paralyzed, right? Dr. Fratkin: It breaks me down. Dr. Bob: Yeah. Dr. Fratkin: But I'm trying to get from .5 to 1. And I'm trying to do it by providing soulful, sustainable, meaningful experiences for my treasured colleagues. Nurses and all these people who, 100 years ago or 500 years ago or 5,000 years ago, would still be doing the same thing. They wouldn't be called nurses; they would be called neighbors. They would be called aunties. They would be called "the ones you call for help when you need it." It's been a part of human society forever, and we are burning out those people in a terrible way. So I'm just as loyal to creating incredible work experiences for those folks, as I am to building capacity to tend to the needs of sick folks, too. Dr. Bob: Yeah. And that's a beautiful thing. And that's how this will grow, sustain itself, by nurturing those who are serving others. Because this work, it's difficult, it's challenging, it is emotionally trying, and as I think we both experienced this, it is such ... It also fills us up in a way that nothing else does. And we don't throw the word "love" around enough. We had a meeting with my team a couple days ago. And when you try to really identify the essence of what we do, and really what we do is we love people, and then we take our skills and our experience and our wisdom, and we apply those in the way that we express our love for them. Dr. Fratkin: For sure. I was talking to a Native American fellow who lives up in the hills. And I was exploring with him his relationship to tribe and culture. And I'm not sure how we got there, and I wish I could remember the pronunciation of the word, but I won't massacre it. But he was explaining to me that there's a word that's being used by the tribe and others that kind of means "thank you," but it's being used in the "thank you" way. In a very, sort of, superficial way. But he said that the word itself is very much more specific. It's the kind of thank you or gratitude that's offered to someone who showed up to meet a need you had. If you're old and someone brings you food, it's the thank you for that. If your roof is leaking, but you can't fix it or afford it, and the guys hop in the truck and start throwing shingles on your roof, it's the thank you for that. It's the thank you for showing up and meeting a need for someone in your community. It's not "Thanks." It's deeper than that. And the presence that we bring, the willingness to love while preserving boundary, the willingness to respect the otherness of these people that we care for. And the willingness to drink a lot of coffee and build out a system to create beautiful jobs and keep the vision as clean and clear as possible. It's the thank you I feel from the community, even if I don't hear it said. I'm so proud of what this team has done for so many people we've touched. 1100, 1200 people who wouldn't otherwise have gotten this care. And that means there are 5-10,000 people who we didn't touch. I'm sad about that, but I'm proud of the work that this incredible team has done over these last three years with very little resource and a ton of coffee. Dr. Bob: Yeah. And a ton of passion and a ton of- Dr. Fratkin: Love. Dr. Bob: Love and determination. And proud you should be, my friend. And I'm excited to continue to follow your progress and the progress of Resolution Care and the impact that you're having. And your model is a model that I'm sure many will want to learn and try to apply in their communities. So before we sign off, I would love for the listeners to go and check out your website. That's resolutioncare.com. And in addition, there's a foundation and an opportunity to help support this amazing, so, so needed care. So you have a 501C3, I understand. Dr. Fratkin: It's called Resolution Care Institute, and there's a page on our website. And if people have a few dollars, they wanna donate, that's absolutely welcome. Yeah. And also, I guess I would ask them, too ... We create maybe once or twice a month what I consider to be pretty high-valued content in a newsletter. And I would love to build the community, so on the website, all you have to do is put in your name and email address, and we'll send you stuff. And if you don't think it has value, you just unsubscribe to it. But I suspect you'll enjoy being a part of our community. We tend to ... We're trying to figure out how to tell stories about the impact of the work that we're doing while getting ourselves out of the way. Just letting people tell their own stories. So we've done that with some videos, and we've done that with some blog posts and other newsletters. And the response we get is favorable. So I'd really like to build that community out if people are inclined. Dr. Bob: Yeah. Awesome. Well, we'll fully try to support that, and to everyone's benefit. And we'll also have the links for Michael's site and the ways to connect with him on our website, integratedmdcare.com. Michael, thank you. You're so passionate, articulate. I could listen to you all day, describing your views and your excitement about what you're doing. And I would love to try to connect again. And I know that there are several things that we wanted to touch on that we didn't have time to, but hopefully- Dr. Fratkin: I'm happy to do this anytime, Bob. This is how we're making an impact, is by telling the truth and sharing that.…

A Life & Death Conversation with Dr. Bob Uslander

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A Life and Death Conversation, Dr. Bob Uslander Ep. 1 26:19

πριν 6 years26:19

26:19

In this podcast, we talk about life, death and everything in between. We'll explore how to age more gracefully, have meaningful conversations, and what you can do now to ensure the best possible end-of-life experience for yourself and your loved ones. Let's become friendlier with death. Transcript Dr.Bob Uslander: Just me. I will be having guests and bring a number of fascinating, interested, and dedicated people onto this show to share their wisdom and expertise. I thought I would take this first show as an opportunity to introduce myself and give you a bit more of an understanding of why I feel this topic and this conversation is so vitally important. Every day in the course of my work, I have life and death conversations. I talk with people about how to make their life better, more comfortable, more supported and, frankly, more enjoyable. I also talk with people about how to make their death better. When people are no longer able to find comfort, or joy, or meaning in their lives because they're old or they're sick, the only thing that they really look forward to at that point is their death and it's amazing to me when somebody is willing to sit with them and talk about that in a comfortable way, in a way that doesn't make them feel judged or make them feel afraid. They open up. They are so grateful to have that kind of honest conversation and connection. I've been a physician now for close to 30 years and I've had so many conversations. Initially, I was very uncomfortable with the whole concept of death. When I first finished medical school and began my training and then my work as an ER physician, I had a lot of encounters with death. But, for the beginning of the early part of my career, death was always the enemy. When somebody died, it was a failure and we tried to avoid that at all costs. As I've gotten older, hopefully, a little wiser, and I've had more experiences, personal experiences, as well as experiences in my career, I've come to understand the concept of death and how death fits in a much deeper way. I no longer feel that it's the enemy. I actually feel a close kinship, a friendship with death. That's what I want this conversation to do for others, to help you and everybody learn how to feel like death is not your enemy but your friend. This is delicate stuff. I get that. It's very important stuff. I believe that as a society we need to become more comfortable with the concept of death. We need to understand how our idea of death influences our life day-to-day because death is as much a part of life as birth. They're two sides of the same coin. We have no trouble talking about birth. Will it be a natural birth or will it happen in the hospital? Will it be quick? Will it go on for hours or days? Who will be in the delivery room? It's a very natural thing for people to excitedly discuss all the details of the birth of a child. We even have parties to celebrate the upcoming birth and that's great. I think that's the way it should be, but only a small number of people seem comfortable talking about death whether we're discussing our own death or the death of someone else. Most people do anything they can to avoid that conversation or they quickly change the subject when in a conversation. This avoidance of talking about death leads to an amazing, incredible amount of unnecessary struggle. It leads to anxiety. It leads to regret. It leads to guilt that can last a lifetime for a person who experiences the death of a loved one or a friend. I want to repeat that because really that's the reason I'm having this conversation. Refusing to talk about death leads to an enormous amount of anxiety, struggle, regret, and guilt. Most of that is completely avoidable. I believe the reason that I've been so successful in my new medical practice, which is in large part helping people to have a more dignified and peaceful end of life, is because I'm willing to talk about this. I'm willing to talk about death in a way that most physicians aren't. Unfortunately, most doctors are as uncomfortable and maybe even more uncomfortable talking about death than their patients. This really compounds the problem. One of my goals is to help you help everyone feel more comfortable talking about death because I'm convinced that's how we can achieve a better life. I want you to be more comfortable so that you can figure out how to make sure that you or someone that you care about has the most comfortable and struggle-free death whenever that happens. I want you to have the tools you need so if you're supporting a loved one through the end of their life or you're approaching the end of your life, you don't end up having regret. If you are supporting a loved one, I don't want you to have regret and guilt about what you did or didn't do during that time. When you're right in the middle of that storm, that's not the time to be preparing. The time to do that is now while you have the opportunity. Here's what we need to agree on. It's going to happen. You're going to die. I'm going to die. The people you love are going to die. Our pets are going to die. Try as we might, there is nothing that can change that. Every living creature that comes into existence will die someday, from the insect that lives less than 24 hours to the tallest and mightiest redwood tree that lives for centuries. Everything has its time and then it dies and you're no different. I'm no different. Your parents are no different. Even your children are no different. The goal should not be to try and ignore or defy that principle, that fact of life. The goal should be to recognize and even to embrace the magnificence of this master plan or the random nature of things, whichever way you believe. But the goal is to live a life of meaning and joy and to feel gratitude for whatever time we have to share in this adventure that we call life. There are two choices. You have two choices. You can refuse to think about death, refuse to plan for it, even live in fear of it or you can find a way to become friends with death, to embrace it, to prepare for it and to allow the awareness and acceptance of death to inspire you to live with more inspiration and even to comfort you. Again, death isn't the enemy. What I believe is the enemy is a life without joy, without a sense of control and without hope that things will get better. I'd like to share how I view or feel about death. I don't know exactly how I came to this awareness but it's been helpful for me and comforting for me and perhaps it can be that for you as well. I see death like the same way that I feel about an old friend, a friend who I knew when I was very, very young, maybe four, five years old. I have these friendships from my earliest years that were very dear and I look back at those relationships with a lot of fondness. I feel there was a deep connection that was based on sharing joy. There was very little else. I know that I haven't seen this person, this friend, for many, many years and I may not see that friend for many, many more years. But, I believe that someday in the future I will again. We will reunite. When we do, we'll have this immediate sense of connection, recognition, love, and comfort, and the time that has gone by, the decades that have gone by will be meaningless. We know each other in a way that transcends the knowledge of what happened day-to-day in your life. Those things don't matter. They're just the details. I have this sense that death is like this old friend who's not thinking about me all the time, not necessarily looking forward to anything in particular. But one day we will meet again and we will know each other deeply. That's how I feel about death because before I was born, I was in a void and I was in the same space where I will be again after I die. There's a familiarity. We've been there already. We have nothing to fear. Interestingly, my first exposure to death was pretty traumatic. I look back now and I think about that first real experience with the death of another person and that happened in my third year of medical school. I'll share that story because I think it's fairly poignant. Up until that time, the only person I had known who had died was my grandfather and an old aunt. I wasn't there when they died, and as a child, it impacted me, but I was somewhat removed from it. On the very first day of my third year of medical school, that's when we start doing our clinical rotations and I was on the internal medicine rotation in that very first day. The first two years we spend mostly in classrooms and auditoriums doing lectures and going into labs and dissecting cadavers and learning about germs and medications. We'd have a little bit of contact with patients just by practicing, taking histories and doing physicals but we really didn't take care of anybody. That very first day after a long day of working on the medical ward, I was on call and it was my very first night being in the hospital and I was very excited, a little anxious. I didn't know what to expect. I was very excited. After dinner, I went to my call room and I cracked open my textbook. Then I got called to do a few things, draw some blood, go and manage a couple of minor things. About midnight, I was ready to turn in and try to get some rest. All of a sudden, I've heard the alarm, the code blue alarm goes off. I heard that there was a code blue in the ICU. My call room was immediately across the hall from the ICU so I jumped up and I ran across the hall and I ran into the ICU and I saw a whole bunch of activity in this one bay. I walked into it and I saw a group of nurses scurrying around frantically and on a gurney on the middle of the room was a man who looked like he was in his 40s. He was a young man. He wasn't an old man. He was young and they were trying to administer medications and trying to figure out what do. I realized there were no doctors in the room. There was nobody actually giving orders or directing the nurses. They looked at me like I was supposed to be the one doing that and I had no clue. I panicked. They saw that. They realized that. One of the nurses said, "Why don't you do chest compressions?" I came over to the side of the bed and I got on a little stool and I started doing chest compressions, CPR. That was what I focused on. I didn't know what else to do. I was pushing, pouncing, trying to keep the blood circulating by compressing the heart, and this went on for several minutes, and then I realized that somebody else had come into the room who was taking charge. It was a resident and they were letting the nurses know what medications to give and what to do. Eventually, they shocked the heart and they got a heart rhythm back. That had taken several minutes, hard to know time-wise because everything seemed to happen very slowly in those moments. But it was probably about five minutes. During that time I was literally inches away from this man's face and I was watching and looking for some sign of life and feeling a sense of hopelessness and a sense of dread because this was a man who was in his 40s and he was dying or he was dead. They got a heart rhythm back and everyone stood back and the resident, the doctor ... All the doctors have come in by that time and they put their heads together. Everyone trickled out of the room except one of the nurses and me. I think the doctor went off to find the man's family and have the conversation with them about what had happened. I had a little conversation with the nurse and I learned that this man's name was Paul and he was 47 and he'd been in the hospital for pneumonia. He had three young children or teenagers and young children and a wife. I ended up getting his chart and looking through it and learning more about him, and I realized I was right in the middle of it. I was right in the middle of everything. It was intense. A short while later, his heart stopped again. He coded again and the same routine happened over and over. I went up there and I started doing CPR. By that time, I was feeling cramps in my arms. I was sweating. I felt ribs cracking under my hands as I did chest compressions. I realized— even being just a third-year medical student and not having much experience— I realized that this man was not going to survive but we were trying everything possible to bring him back to life. He'd gone so long without getting oxygen to his brain that, even if his heart was to come back and start beating again and he went on, it was clear that he would have suffered severe brain damage. Yet everyone continued trying to bring him back to life and partially succeeded. He actually regained his heartbeat again and the same process repeated four times over the several hours during that night. Eventually, his heart stopped for the final time and didn't start again and his wife came in and his teenage daughter came in. I watched as they said goodbye in tears. The whole episode was so intense, somewhat surreal but it felt like we lost. Death won. We lost. Everybody else lost. At that point, I bought into this whole notion that death is the enemy and we failed. We failed Paul. We failed his family. That was really the beginning of my clinical medical career and I ended up finishing medical school and going into a residency in emergency medicine where death continued to be the enemy and we fought against it. About 10 years into my medical career, I had an experience that changed everything for me and was really the beginning of a new way of seeing life and death and a new way of practicing medicine. That was in 2001 when my who was 32 died from melanoma. He was an athlete. He was a fun-loving, adventurous human being, creative. He was a photographer. He had three young sons. They were five, three and one, Ethan, Seth, and Caleb, and had a wife named [Ronda 00:20:14] who was also a friend. Darren's melanoma began to progress and he became sicker and weaker and I became his doctor because he hadn't had a doctor because he was previously just a healthy young guy. As he declined further and needed more support, we brought in the hospice team in this community. This is in a small town in the Sierra Foothills. When the hospice team came in, the nurse, the social worker, the aides, I saw something I had never seen before. I saw a way of caring for human beings that were so different. It was focused on love, compassion. It was sensitive to his needs, to the family's needs. I became part of this very sacred journey. Eventually, Darren died. I was with him, sitting with him in his room in the company of his wife and some very close friends and family. As tragic as it was, it was incredibly peaceful and beautiful. That was September 14, 2001, three days after 9/11. I will never forget that feeling and that experience planted a seed within me that has allowed me to grow as a human being and as a physician. It was really the beginning of an entirely new chapter of my life and it drove me to do the kind of work that I do now which is focused on allowing people to have that kind of experience that Darren had. I thank you, Darren, for allowing me in and Ronda. I believe that I'll have Ronda on the show at some point in the future to talk a bit about that experience and to share what came out of that for her because she's created an amazing life, partially inspired by Darren. And her children live on; they're all young adults now. I share that because it was an incredibly meaningful time for me and it was something that truly impacted my life going forward in every possible way. I continued practicing emergency medicine for many years after that but I started doing things differently. Eventually, I ended up creating my own medical practice, Integrated MD Care, which is predominantly focused on helping people have the most peaceful, dignified end of life possible. I will be bringing on guests in the future who work with me in this capacity. I will be speaking with people in many walks of life who are involved in some way with improving the quality of life, the fabric of life for others and who are fellow travelers on this journey of helping to get the conversation about life and death raised to a higher level.…

A Life & Death Conversation with Dr. Bob Uslander

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Healing After A Loss, Ken Druck Ep. 3 40:13

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40:13

Dr. Ken Druck's work in personal transformation, male psychology, parenting, and grief literacy has awakened readers to their absolute best selves for almost four decades. In this episode, Dr. Druck and Dr. Bob talk about healing after a loss. Contact Dr. Ken Druck website Transcript Dr. Bob: I'm here with a good friend of mine who I'm excited to have this conversation with. Ken Druck and I have had many conversations over the years, most of which end up being fairly deep and a lot of insights come out of them. I think we're just both in this space of really contemplating life as well as death just because of who we are and our experiences. I'm excited to have Ken share some of his insights. He'll do that in just a moment, but I'd like to introduce him to you. Ken's work in personal transformation, parenting, psychology, and the literacy of grief has really helped people become, I think, their best selves for almost 40 years now. When you look at Ken, you can't believe he's been doing this work for that long. He's the recipient of numerous awards including a Distinguished Contribution to Psychology, Visionary Leadership Award. He has really a lifetime of service to the community. He's recognized really as a lifeline to people all over the world, to individuals, families, and communities through his work, which includes the founding of the Jenna Druck Center to honor the life and spirit of his daughter, Jenna; and we'll talk a bit about Jenna and the foundation that he created. Ken really has kind of set a new standard of care and healing out of tragedies like 9/11, Columbine, Katrina, and Sandy Hook, and I look forward to having him talk a little bit about how those experiences have shaped his life and his perspective. Ken has recently come out with a new book called Courageous Aging: Your Best Years Ever Reimagined. In this book, Dr. Ken explores the fears, some of the myths and biases in our culture about aging, so it's a perfect setup here for this conversation. In the book, he also kind of debunks a lot of the myths and offers a path to help people immerse themselves in the wisdom that we've cultivated over the course of our lives. With that introduction, I would like to introduce and ask Ken to say hello. Dr. Ken Druck: Greetings, Bob. So good to be with you and in a conversation, in a life and death conversation. My goodness. What a wonderful forum you've created to be able to talk openly and safely about all these important issues that so directly improve the quality of our lives and the quality of our deaths. Dr. Bob: Yeah. Well, I appreciate that. The inspiration for this really comes from life, from just being in this space. You're the same way. You're having conversations with people, both personal and in your professional life. I think, like me, there are many times when you think, wow, if somebody else had been able to listen in on this conversation, how much value would they have received, how much insight into their own issues and their own struggles and their own sort of triumphs. The conversations I have with my patients, with their families, with people like you, I think are so valuable, and I don't want to keep it to ourselves, right? I feel compelled and pulled to really allow people in on these conversations, so thank you for being willing to join in. Dr. Ken Druck: Thank you for having me. Dr. Bob: Yeah, absolutely. In your introduction, I abbreviated it. There's so much more, and I think we're going to have a conversation that will last about 30 minutes. I know that the wealth of information that you have and the experiences and insights could go on for 30 hours or potentially 30 days. It's going to be a challenge, but we're going to try to keep this concise enough, and then probably have follow- up conversations as time goes on. I posed some questions to you in advance of our conversation, and I want to jump right in. I don't mince words, and I don't pull back. I just want to get this out there because I want this to be part of our conversation, and I want it to inform and infuse our conversation. What are your thoughts about death? Are you afraid of dying? Do you have fear about dying? When you think about death, what comes up for you? Dr. Ken Druck: Well, it's a great question that does go right to the core. For me, the fear or the feelings about death are a moving target. It's not as though you run a marathon and you cross the 26-mile line and it's done. I think things that happen over the seasons and the course of our lives ask us or challenge us or force us to confront how we feel about death, and I'm no different. The death of my daughter 21 years ago was an opportunity as well as a tragedy— the opportunity to face down my biggest fears of death. My daughter had died. I had to come face-to-face with that reality, starting with holding her body in my hands, in my arms, facing the idea that her life as we knew it had ended. I thought going all the way back to last year where my 92-year-old mother passed, and I had a chance to help her die. I think the things that happen that we react to or the losses we suffer effect and change and create opportunities for us to face down our biggest fears of death, to comes to terms with our life as it really is, life on its terms as it is, and to settle some of those fears. Now, are they going to be settled forever? Are we going to find peace or make peace and have peace forever and it's a done deal? No. Those concerns, those feelings, the sorrow, the love, the complex of emotions that come with dealing with death are going to bubble up and resurface. We want to make sure not just to wait for death to arrive or somebody we love to pass. We want to be proactive and take steps to get ahead of the pain curve, to get ahead of the fear curve. Dr. Bob: That's awesome. How do you do that? I know it might be hard just to distill it down into a sentence or two, but how do you get ahead of that? If there's somebody who maybe has fear because of an experience because maybe somebody in your family had a tragic death or a difficult death and, like many people, you live with this underlying anxiety or fear about this mystery and when is it going to happen and how painful is it going to be. How do you think people can get ahead of that? Dr. Ken Druck: Well, I boiled it down to what I call the five ideals of courageous living and how we face down the fear of death. I've got basically five things that I recommend. Number one, stay humble, find peace in your unknowingness because there’re sometimes in life where we just don't know, and we have to hold that unknowingness in gentle hands rather than trying to force and will it into knowingness. We're basically part of something so big that at times it's unfathomable. The true nature of the universe—where life comes from, where it goes when we die—is an unfolding mystery. All we have to do is look up at the stars to understand that. The second thing is to cultivate a calm mind that allows naturally arising fears and doubts to come and go and learn to breathe and release even those primordial fears. It's kind of a form of surrender, and we can learn how to make peace with life as it really is by summoning courage, by facing in. Third is to take the elephant out of the room by opening the lines of conversation, just as you and I are doing today by talking about death and discussing our thoughts and feelings with people we trust. Fourth, keeping the faith of whatever we believe in our heart to be true or what we wish to be true. It's okay to abide by a hoped-for narrative without knowing that it's 100% accurate or not. We don't have to know with complete certainty that oh, here's what it is, here's the program for death, I read it somewhere or somebody told me this is what it is, or this is my sense of it. It's okay to keep the faith, to have it be a gesture of faith, to believe whatever we believe in our heart is true. Lastly, it's also just fine to have faith in a divine truth without apology or justification. We can do that while respecting and honoring the rights of other people who have different views or different religion or different spiritual path that they're on and a different view of things. Those are the things that I believe we can do to cultivate a courageous attitude towards living and to face down the fear of death. Dr. Bob: That's beautiful, so really this is universal. I mean, it's regarding any fear or anything that might be challenging us or limiting us in our life, not specifically around a fear of death, but that seems to be a big one for a lot of people, right? Dr. Ken Druck: Yeah. You know, Bob. We've got these brilliant emotional systems. They're as sophisticated if not more so in some ways than all the other systems that sustain life. We have this emotional system, which gives us internal signals, radar signals, from inside of ourselves, right inside of our hearts, showing up as our emotions. When these feelings turn up, it's our job to learn how to manage them, to decipher them, to decode them, to understand them, and to utilize them as part of our radar, as part of our self management, and to use them to our advantage rather than oh, that's a negative feeling, I better shoot it. That's negative. We've been brainwashed into believing that there are negative feelings rather than understanding that some feelings that bubble up and surface are going to be sorrow, fear, anxiety, worry, frustration, that we need to read these feelings, not become prisoners to them, but to read them and to have them inform us about what action to take, to inform us that it's time to vent those feelings. We're not built to hold them in steel compartments inside of our bodies, but to vent them in a healthy and constructive way and to turn those feelings into something good. Dr. Bob: Yeah. I think that's powerful. I think people need to be given permission to feel, right? My sense is that so many people when they start to feel something that might be uncomfortable for them, and this is a pattern that develops over time, they feel something, they don't how to navigate that, they don't know how to manage it, and so they just choose not to feel it. They turn away from it. Dr. Ken Druck: They become flooded. Exactly. They become emotionally flooded. This is particularly true of us as guys. We learned at a very early age basic training as a male shows us that to feel is to fail. If you're feeling something unless it's anger because anger is a good. Dr. Bob: Yeah, that's acceptable. Dr. Ken Druck: If you're feeling something, it means you're not handling it, you're weak, you're dependent, you're less of a man. You're less of a guy if you're feeling something because sensitivity and emotionality are perceived as signs of weakness. We got to fess up. We got to suck it up and deal with those feelings. We shouldn't be feeling those things. We become self-denying, self-rejecting creatures. We push our feelings away to the point that we lose our radar. We lose contact with our own radar. When somebody says, "Hey, what are you feeling?" We don't know what they're talking about. What are you feeling? You mean, what am I thinking? No, what are you feeling? How is this working for you? You just got a diagnosis, a bad diagnosis. How are you doing with that? When it comes to some of the most challenging moments, the moments of truth in life, relationships and our health and how long we're going to be here in our living and dying process, those emotions are what gets us through. Those emotions are the very tools and knowing them, reading them, and processing those emotions keeps us alive every moment of whatever time we have rather than us beginning to die emotionally long before our time and disconnect from those people we love. Dr. Bob: Yes. I get it. I think most people who hear this will resonate to some degree with that but obviously, it's not easy, right? Dr. Ken Druck: No, not to summon courage. Just like every other work ethic, everything else, there are times that all of us can look back and count that we summoned more courage, newfound courage to face into becoming a mom or dad, face into taking a job or starting a career or going to college or, even as parents, letting our kids go to kindergarten or sending them off to college. We had to summon courage. We have to summon even greater courage to face into some of the fears and some of the issues that arise naturally in the second half of life, including facing into our own impermanence, the fact that life is a package deal, we don't get to live forever, at least not in this form, and we have to deal with that. How we summon that courage is clear. We do it the same way we've done it before. We face something. We talk openly about it. We air out. We don't try to do it all at once. We strengthen ourselves. We get ourselves into game shape and improve the condition we're in, our mental toughness by doing this, by talking about it, by taking moments of reflection, by summoning all of our abilities to comprehend, to surrender, to let go, and to arrive in the season of life that we're presently living rather than dragging the past around and regrets, remorse, unforgiveness, harsh criticism. Rather than dragging, we have to learn how to let that go. There's a whole university and school of thought about how to summon greater courage because it is a process that occurs over time that we can all plug into, and it's going to be different for every one of us. Dr. Bob: I feel like there's so much incredible value in what you've shared so far. I want to encourage people, the listeners, to go back and listen again. There's no way that anybody will be able to take in what's been shared here in one listen. I really especially, well, the whole thing—but I'd also like to kind of summarize because I think it's so critical. There are so many people who find themselves in this space of despair, of feeling like they can't climb out of that place, it's dark, it's pulling them in, and they don't know how they're going to do that, and to give them those tools to help people understand that even if they can't look at their own experience in the times when they've found the courage to look at others around them, to see that yes, people have been in this space before, and they have found a way out. I think that looking at the whole of human experience and finding examples of people in your own community or that can inspire you. Obviously, if you can find your own inner kind of compass and go back and identify those times of your own life, you'll hopefully connect with that. I see people who have just lost somebody or they're dealing with these terrible challenges from an illness or an injury, and they say, "I can't do this. I don't have the strength. I'm not going to make it. I can't get through this." I help them see, if possible, other people have done this. This experience is an experience that people have had for thousands or tens of thousands of years, and people get through it. It's not easy, it doesn't happen immediately, but you are part of this human race. You have the same inner strength and capacity as anybody else, but I want- Dr. Ken Druck: I like what you're saying. I want to add to that. Dr. Bob: Yeah, please. Dr. Ken Druck: Asking for help. Help is the least utilized four-letter word in the English language. Asking for help. When I think about all the people that I know that I've sent to you for help, you have been an inspiration. Sometimes we can't do this alone. It's okay to ask for help, to call in support, asking others how they did it, whether that's reading... I mean, I wrote the Courageous Aging book so that people would have something to refer to be able to see how others have done it, how other people have tried to run from some of these things and fail, and how other people have courageously learned to face into whatever they were dealing with. So reading a book, reading articles. I think also seeking inspiration. There's music that I play every day because without words it inspires me. It's music that comes from a source of inspiration that's coming through a great composer, so I listen to music. There are all kinds of ways of nourishing ourselves, whether it's music or great food or walking in nature. I think what you said before about remembering the past seasons of our lives where we had great courage and remembering I can do this, look what I did. I can do this. Lastly, it's surrendering at times. There are times where we're standing in a moment of inescapable sorrow or facing into unknowingness or feeling emptiness. Those are moments where it's okay to surrender into tears. It's okay to surrender to feelings of helplessness and powerlessness. Also, that surrender sometimes takes us into a sense of what's beyond this life— of what I call the great beyond, the enormity, to have a sense that we are joining. Wherever my daughter is, I'm going to be with her. Wherever she is or isn't, I'm going to be there. Wherever my ancestors, those who have gone before me are. And with those feelings, it's not only to make peace with ourselves, but it's to free up the next and final phase of our lives, which is paying it forward, paying the gratitude for the blessing that we've had, being given this life, being able to experience all the things that we sometimes take for granted. Being able to give our gratitude by paying it forward, planting a tree that we won't necessarily ever get to sit in the shade of, but that our children, our grandchildren, and future generations will be able to sit in the shade of that giving tree. That is one of the most important aspects of making peace and understanding that it's okay. Yes, it's scary. Yes, it's terrifying at times. Yes, it requires courage that I haven't had to summon before, but that I can do this, and I will go forward. This is the nature and the way of life. I don't get to play God, I don't get to live forever in the way that I know, and I surrender to it. Dr. Bob: It's no wonder why you are being asked to come and be with people who are experiencing tragic loss. You have such a gift of sharing that perspective, sharing the understanding of one who's been there and who has learned how to navigate it. I know that you would be the first person to admit that you're not finished with your growth and working through your sorrow that will never end, right? Dr. Ken Druck: It's okay. You know what, Bob, a mom once said it to me—she had lost her only son— and she told me after a couple of years I hadn't seen her. She said, "Ken, the most important thing I've learned is that it's okay that it's not okay." She said, "It's not okay. I reject the idea that my son had to die so young, that he didn't get to live out his life the way we had all planned. That was my dream, that was what I had put my heart and soul into. That was my future as well, and it's been lost to him. His life has been lost to him and to me and his father." She said, "But I've learned over time that it's okay that it's not okay. Some things in life aren't okay. I'm never going to accept that history as good." It sucked is what she said. "It just sucks that this is the way it is. This is the way it turned out. This is the way history will write it." She said, "But I also have found peace that this is the way of life. I'm not the only one who's suffered a loss of a child way before their time and had to face into the challenge of living out the rest of my life as an expression of love rather than despair. I accept that challenge and I've faced into it, and I'm learning how to live forward in my life and to make my life an expression of the love that never dies rather than to despair over the fact that my son died young." Dr. Bob: Conceptually it's powerful, but really in practicality, it is as well. I'm around, as you are as well, a lot of people who are anticipating an upcoming loss of a loved one or who have experienced the loss of a loved one. I think one of the most powerful and valuable ways for them to go forward is with the understanding that their loved one, their son, their daughter, their brother, sister, wife, husband, father, that they would never want that person, those loved ones who are left behind, to hold back, to be held back because of that loss. It's honoring those who have gone by living your life as completely, fully, forcefully, intentionally as possible. Dr. Ken Druck: Exactly. You and I talked about it, and I have my code of honor, my five honorings, and that is the core of those five honorings—that we somehow summon the courage to go on with our lives, to write new chapters of life even though they will not be here to write those chapters with us, that we're going to go ahead and we're going to live forward. We're going to go on, and we're going to make the rest of our days meaningful and purposeful, and we're going to keep our love alive by doing one of the other honorings, which is to create a spiritual relationship with them. What I mean by spiritual is that it's the unseen, unknown conversation we have purely out of faith. When I tell my daughter, Jenna, I love her every day, do I know that I'm connecting with her? No, but it's an act of faith. I'm not going to let that love go unexpressed. When I feel she is close and she's loving me and something wonderful has happened and she's celebrating with me, am I going to deny that arrogantly? You know, I know what life is, I know what death is. She's gone. That's not really her. I'm a delusional father. No. I'm going to allow that love to flow to me. The five honorings are writing new chapters of life; creating a spiritual relationship with them even though it's not what we signed up for. Survival, our own survival, is an honoring, finding a way to get to the next breath even though at times we are so lost and feel so empty and so sad; then embodying some element of their spirit that will live on with us. It could be their kindness, their sense of humor, something they loved. Whatever it is, embodying that and becoming more of that as we grow up and as we grow older. Lastly, it really has to do with how we treat other people, that we treat those people in our lives as an expression of our love because many families unravel at the time of loss. We're so raw, the emotions are so raw. After 9/11 we instituted a program that had to do with the way we treated one another and was an expression of our love for the person we lost, and it was called Take the High Road. Taking the high road, even though there's that rawness of emotion in our families and people want to resort to blame or who loved who or who did what. To step outside of that. Let it go, be forgiving, be patient, be kind to one another in that moment of rawness, and treat our families as an expression of love to the person we're either losing or have lost. Dr. Bob: I love it. Those are awesome, the honorings. For somebody who wants to read more about those five honorings, where would they find that? Dr. Ken Druck: They'd go right to my website. It's www.kendruck.com . They can go onto my Dr. Ken Druck Facebook page . That's facebook.com/kendruck. I welcome a phone call in our offices in Del Mar and San Diego. Any way I can be of help, I'm honored and privileged to be able to continue working with you on teams. You and I find our way to helping families together, and I'm always honored to be of assistance to families that you're working with that, frankly, would be lost without you as a lifeline. I'm so glad that we've had a chance to have this conversation to be able to share it. Dr. Bob: Yeah. I am too as well. Again, we touched on some really poignant and important topics and kind of scratched the surface a little bit. I think there were some really great highlights. Again, I think people will benefit from re-listening to this and having it be available. Your website has a wealth of information and support. Before we get off, I want to ask just briefly about your new book because I know that it's been taking up an enormous amount of your time, getting the book out, getting the book promoted, getting it into people's hands, letting people know about it. It's phenomenal. It's called Courageous Aging. I just want you to share a bit about the inspiration for putting this book together and just give a few of the highlights if you could. Dr. Ken Druck: Yeah, Bob. The Courageous Aging book wrote me. This season in my life, all the issues, all the challenges that come up as we get older, especially when we wake up and we realize that we've been sold a bill of goods, myths, and misconceptions about getting older and that many of our imaginings of our future are really saturated with dread and fear and cultural biases. We look at other cultures around the world. In India, when you turn 60, you're just waking up. Life is just beginning. For us, you turn 60 and you're on the back nine of life. Your life is over. You're supposed to retire and become irrelevant. Yet I'm at age 68. I've entered the most creative phase of my life. I've never been more creative. I'm writing books, I'm writing articles, I'm speaking. My work with people has never been better, more focused, more loving, more caring and compassionate. I decided that, as I have in other seasons of life, that the best way for me to learn was to ride the horse in the direction it was going and to write. My meditation is writing, and I write myself into greater awareness. I also share the awarenesses that I'm coming across, and then I'm learning from other people. Courageous Aging is really a formula for aging positively, successfully, in a robust way and reimagining our best possible future and creating a critical path so that we can realize that future. Every chapter deals with a different element and challenge of aging. The first chapters are a self-audit where you could actually test yourself. How am I doing on getting older? Where are my hot spots? Where am I struggling? Where am I doing great and soaring? We can take inventory because everything good starts with a little self-reflection. I think once we've taken inventory we can begin to focus and fashion our course to have our best possible future, and every chapter deals with a different element of what it takes to create that best possible future. Dr. Bob: Timing is amazing, right? I mean, there's so many of us who are moving into this space, this space of, I guess, aging and trying to figure out what does the future hold. How do I continue to find value, having meaning? Like you said, I'm not ready to hang it up and just start golfing and rocking on my rocking chair. I think that Dr. Ken Druck: By the way, you know who I'm getting feedback from? I'm getting feedback from 40-year-olds who read the book, 50-year-olds. We think of aging as an issue for people past 60, 65. The aging angst and biases infect people who are turning 30. They're dreading, "Oh my god! I'm turning 30." The dread of getting older and the invitation to lose our vitality, our passion, our energy, and to kind of shut it down is there at every turn, at every turn of life and every changing season. It's no different for those of us turning 70 in some ways than it is for those of us turning 50. We all have to face it and really take charge of creating the future that we want rather than buying into the cultural norm, which is being sent out to pasture or having to give up things we love. Dr. Bob: I love it, and I would imagine that it wouldn't need a whole lot of modification to be really appropriate for and valuable for people who are 20, right? Dr. Ken Druck: It really isn't because you're going to be changing seasons. Dr. Bob: All the time. Dr. Ken Druck: ...and how you do that and how you go about that should be dictated on the basis of how you feel, not what somebody else tells you that you should feel or do. We all need to set our own course, and we change. That's okay. It's okay to grieve the younger version of yourself. That's all right. It's okay. Grieve it and then move forward because this new season, you're going to miss it if you're so obsessed with what you lost and what's past. You're going to miss the opportunity of this new season of life. Even if it's towards the end of your life, don't miss out on the best part of your life. It may be that the coming weeks, months, and years of your life, if you're given that, are going to be the best ones ever, so show up for it, be there, let go of the past, grieve the past self, and embrace what's right under your nose, what's right here now. Dr. Bob: How do people get a copy of the book? Dr. Ken Druck: They can go on amazon.com, they can go to their favorite bookstore and order it, amazon.com. If you have a Kindle or something, you can download it for, I think, 7 or 8 dollars right away, or they'll get it to your house in a day or two on amazon.com and, of course, it's available in the bookstores. If you have any trouble getting a hold of the book, just contact our offices or go to our website. You can order it directly from our website too at kendruck.com . Dr. Bob: All right, my friend. Well, I think for this podcast, we have moved past the time that I was anticipating, not surprisingly. We will Dr. Bob: Yeah. If you're open to it, Ken, I'd love to have you back another time to Dr. Ken Druck: Always an honor, Bob. Always an honor to talk with you and work with you. Dr. Bob: And you as well, my friend. I just want to share that I find you so refreshing. You are a brilliant, loving, compassionate servant of mankind. I'm inspired and humbled by the work that you're doing and by having you in my life. I want you to know that. Dr. Ken Druck: Bless you. The feeling is completely mutual. I thank you so much. I'm learning how to receive. That's one of my goals in this point of life is to open my heart, touch my heart, and learn how to receive. What's you've just given me is beautiful. I'm going to take that in and savor it today. Dr. Bob: All right. Beautiful, my friend. Love you. Thank you for being part of my life and thank you for sharing all this beautiful insight for our listeners. Dr. Ken Druck: Thank you. Love you too, my brother.…

A Life & Death Conversation with Dr. Bob Uslander

1
Why I'm Ending My Life, Bill Andrews Ep. 2 41:25

πριν 6 years41:25

41:25

Dr. Bob's patient, Bill Andrews had ALS and was terminally ill. Before Bill decided to exercise his right to die in California, he agreed to do this interview to help others understand the importance of the law and his decision. Transcript Dr. Bob: Hi everybody. I'm here today on the phone with a gentleman who I'm really interested in having everybody hear from and meet. It's kind of a unique opportunity on all counts to hear from a gentleman who has lived life very fully, really did a lot of things that many people only dream about doing in his life and before he was able to really see that life through, was afflicted by a disease that has no cure and is universally debilitating and in many cases fatal. He's become a patient and a friend and I've had an opportunity to really be amazed by his story and by his outlook and approach, both himself and his family. We only have a brief opportunity to hear from and learn from Bill because, well, you'll find out why in just a bit. I'd love to introduce William Bill Andrews. Bill, say hello to our listeners. Bill Andrews: Hello listeners. Dr. Bob: Thanks. Bill Andrews: This is Bill Andrews reporting in. Dr. Bob: Thank you, Bill. Thank you so much for being here. Bill, who's with you? You have a couple of your sons with you as well. Can we introduce them? Bill Andrews: Yes. I'm with my oldest son, Brian, and my youngest son, Chris. Dr. Bob: All right, and thank you guys for Bill Andrews: They can say hello, I guess. Brian: Hello. Dr. Bob: All righty. Sounds good. As I mentioned, Bill is a 73-year-old gentleman with ALS. Bill, how long have you had ALS? Bill Andrews: I'm going to say probably about—I'm going to guess about two years. Dr. Bob: Okay. Bill Andrews: I was diagnosed about what, a year and a half ago, Brian? Brian: One year ago. Bill Andrews: One year ago. Then it was very obvious that there was something seriously wrong. The precursor to this is I had broken my back. I used to motocross and do a lot of surfing and stuff and I had many, many ... I brought injuries into the ALS experience. Broken back. Oh, just all kinds of stuff, so when I finally couldn't deal with the kind of the day-to-day life of my current injuries and stuff, that's when I really got [inaudible 00:02:51 ALS because I couldn't stand up. I could barely walk. I was still trying to surf, like an idiot, but it became very difficult. Just a year and a half ago I was in Peru surfing. Dr. Bob: Wow, but you knew something was going on? You had already Bill Andrews: I knew something was going on. Dr. Bob: Okay. Bill Andrews: I knew something serious was going on. Dr. Bob: Then a year ago it was officially diagnosed and then what’s Bill Andrews: Correct. Dr. Bob: What are things like today? Bill Andrews: Horrible. I'm in bed. I get fed. I wear diapers. I'm kind of confined to my bed. We have a Hurley lift, I'm going to guess that thing is called. Dr. Bob: A Hoyer lift. Bill Andrews: Hoyer lift, and I just get into that and I have an electric wheelchair. Last weekend I was able to get out and see my kids play some sports and stuff, but that's about it. This is where I live now. At Silvergate, room 1-1-3 in my hospital bed. Dr. Bob: Wow, and a year and a half ago you were surfing in Peru? Bill Andrews: When was it? Brian: Yeah. It was a year and a half ago. Yeah. Yeah. Bill was surfing in Peru. Bill Andrews: But I knew there was something wrong, you know? I was struggling. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Really mightily. Dr. Bob: Yeah. As far as you are aware, and you've been dealing with this and obviously researching being treated. You've been in the system. Bill Andrews: Correct. Dr. Bob: Everybody, the best that medical care has to offer has been offered to you, I'm assuming. Bill Andrews: Correct. Dr. Bob: Here you are in this situation. What is your understanding of what will happen if things just are allowed to go on as they would normally? Bill Andrews: Well, as I understand it, I will not be able to swallow my food chew my food, swallow my food. Nor be able to breathe on my own, as I understand it. Dr. Bob: Right. Which is correct. I mean, the timeframe for those things is unclear. Bill Andrews: Right. Dr. Bob: Have the doctors given you any estimates? Bill Andrews: No. That's a moving target. No, they haven't. No. Uh-uh (negative). Dr. Bob: Okay, but that's inevitable for every person who has amyotrophic lateral sclerosis. Bill Andrews: I haven't heard of anything yet. I tell people, you know, I'd guess ... Because I have some friends that say, “Well, look, Bill, a cure may be right around the corner. You know, just stay in bed and they'll invent a cure and you're going to be fine." Well, that ain't going to happen. In my lifetime anyway. I don't want to go out with the tube in me and all that stuff. I feel at least now I'm reasonably good mentally and this is kind of where I'm at a good point right now. Spiritually, emotionally, physically. Dr. Bob: Great. Bill Andrews: That's where I am. Dr. Bob: That's where you are. Bill Andrews: Yep. Dr. Bob: What's your game plan? You want to talk about the strategy and what's been happening? Bill Andrews: Well, my game plan is—well, for the last couple of weeks I've been trying to wrap up a lot of little-unfinished tasks and chores that I wanted to complete, little projects, but I think they're doing just fine. I think my family ... I guess the big thing for me is that my family, that we're all on the same page. That to me was crucial. That we all understood what I was doing and why I was doing it and that this was all my choice. Looking at what the options are and for me, an option is not being confined to my bed the rest of my life and being kept alive. I don't want to be a Stephen Hawking, and another thing that I wanted to really pass on to my kids is that I'm not fighting the battle, I'm just kind of lying here. I'm getting taken care of. This ain't a bad ... You know, if you like getting taken care of, this ain't bad. I get my diapers changed, get fed, get dessert. People run errands for me, but the warriors are like my kids and the caregivers and the doctors like you are. You guys are the warriors. I'm just a ... You know, you're the warriors and right now I'm just kind of a settler. I just got to lie here but you guys are out there doing the battle. Dr. Bob: What an incredibly refreshing perspective to have. You know? You're not feeling like a victim like so many people justifiably do. You know, you're seeing it from so many different angles, not just your own. Not only through your own eyes, which is remarkable, I think. Bill Andrews: Oh, thank you. Well, yeah. About 30-something years ago I was diagnosed with a real, pretty bad case of malignant melanoma and I was only given a few months to live at that time. That was about 30-something years ago. My kids were there when I was diagnosed and everything, so I've already fought that battle. I had the tumor taken out of my arm. Had my lymph nodes excised. I fought that battle because I could see there's was a way to win that one, so there I kind of feel like I was a warrior, but here, ah, you guys are. Dr. Bob: Mm-hmm (affirmative). That battle, the melanoma battle, I've seen how that turns out in most cases, which is not the way it turned out for you. It was, at least back then - Bill Andrews: No, I was bad with the - Dr. Bob: You were well aware of that. I know. Bill Andrews: I was very, very lucky. Yeah, I was very lucky. In fact, kind of going a little off track, at the time I had it they were experimenting with BCG injections. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Up at UCLA. They were going to inject BCG in the initial site of the tumor for melanoma. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: I sent my path report up to them and they rejected me because the path report looked so bad, that I probably was going to die. They didn't want that on the report. Dr. Bob: Wow. Bill Andrews: I kind of fought that one out anyway. Dr. Bob: Yeah. Bill Andrews: Flipped a little bit. Dr. Bob: You faced your mortality, right? You had no choice but to face your mortality at that point. Bill Andrews: Correct. Dr. Bob: You were what? Bill Andrews: Oh, there is no choice. Dr. Bob: Yeah. You were in your 40's? Bill Andrews: Yeah. Absolutely. Dr. Bob: With children that were young. Right? Bill Andrews: Right. Correct. Dr. Bob: Certainly not grown adults. Bill Andrews: They were there in the doctor's office with me, yeah. Dr. Bob: Yeah. Bill Andrews: Right. Dr. Bob: I think you were sort of alluding to this and assuming that, maybe assuming that some of the people out there who are listening know what we're talking about. But I don't think we actually discussed what the option is that you are taking to handle things the way that you feel best. Can you share a bit, share that? Bill Andrews: Sure. I, you know, kind of put a box on the board. I'll kind of equate this back to my melanoma. With the melanoma, I was given ... The doctors said, "Well, you kind of have three choices. 1: You do nothing because it appears to be fairly advanced melanoma and just see what happens. 2: You look for some miracle cure somewhere. Go to Haiti or somewhere and find a miracle cure. Or 3: Let conventional medicine dig in, and I took the third choice and I'm still here. With the ALS the choices seem to be kind of the same. I can just sit back here and wait until I can no longer breathe or eat. Or I can be kept alive by breathing tubes and feeding tubes and stuff. Or I can do with this choice that I'm making now, which is to go through the end of life in a peaceful happy way with ... I mean, I feel good about this, doctor, I really do. As long as my family's on board with me it's spectacular. I really don't think there's ... The choice for me, and this is easy, you know. This is the time and I'm not going to be kept alive. I watched a Stephen Hawking film on TV years ago and there was a lot of recrimination and stuff about, anger and stuff, by keeping him alive and I don't want that to happen with my family. Nor do I want it to cost eight trillion dollars to keep me alive. There’re factors that went into my decision. Dr. Bob: Many factors and the decision is still being made every day. Bill Andrews: Every day. Every single day, Doctor. Dr. Bob: Yeah. Bill Andrews: Yeah. Dr. Bob: For clarification, Bill is exercising his legal right in California to go through the end of life option act. To receive Aid in Dying, which means that he's made requests of his physician, who's me in this case, to prescribe a medication that will allow him to end his life if he chooses to take it on his terms at the time and place of his choosing. A second doctor who knows him well has concurred that Bill is of sound mind and has a condition that's terminal. Bill has submitted a written request saying basically the same thing. Four days from the date of this recording, Bill's plan is to get this prescription filled and take this medication with his family around him, his loved ones, and he will peacefully, quickly, and in a very dignified way, stop breathing and die. As I said, Bill's making this choice each day because there's no requirement. He doesn't need to take the medication. He can choose at any time not to, and it's just fascinating to be having a conversation with a man who has the presence of mind, the courage, the support from his family, and knows that there's a very good chance and in his mind an absolute chance, that his life will be ending in four days. I am completely honored and awed to be able to have this really frank conversation with you about what you're thinking and feeling and I remember our last conversation you just kind of blew me away when you told me that you're excited. This whole thing is in some way exciting to you. Are you still feeling that way? Bill Andrews: Oh, absolutely. No, this is a ... No. We're, you know we're ... You, I mean… It's great talking. Let me just kind of preface. You have this really kind way of speaking that most of my other doctors haven't had quite the effect on me that you have. Yeah, I'm enjoying this. I've kind of been a pioneer in a lot of things and this is just ... I'm really enjoying this and let me tell you, Doctor, the thing that's the most incredible thing to me, and this is more of a, really a spiritual and emotional thing, is being able to choose when you're going to die. I've always thought if I were to die the most noble way, for me, would be to be protecting my family, my loved ones, or even a dog in the street or something. If I were going to die, would be doing, I guess maybe doing good, but you never know when it's going to hit, but with this, I get to say the goodbyes. I get to do whatever unfinished business. I get to finish any unfinished business and it's unreal, kind of. Very interesting. I think this can do a lot of good. I was telling somebody this morning that if one were suicidal, the worst way to end one's life would be by suicide by cop or something. Where you actually in one's selfishness at ending your life, you end others. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Where I think that's horrible and I have friends who have done that, but for this, you know, I'm choosing the time. I'm choosing the place. I'm choosing the environment. I'm choosing the company and for me, this is by far, I can't think of anything better. I've almost drowned a couple of times. I've been in car accidents and all that but this is almost soothing. I hope it really works in the way that it's been intended to work and doesn't get prostituted or something in some way that it goes off track. Dr. Bob: You mean the whole idea of the ability to support people in this way with terminal illnesses and the physician aid in dying? You're worried that it could somehow get off track? Bill Andrews: I hope it doesn't is what I'm saying. Dr. Bob: Yeah. Well, there's a lot of protections in there and if I have anything to say about it, it won't. There's enough. You know? Bill Andrews: Yep. Yeah. Well, I know. That's why you know, you guys at the beginning are the ones that are going to chart the course and that's I think, really, really important. Dr. Bob: Yeah, and I think it's important for people to consider, to understand that this is so far away from suicide. When I hear the word physician-assisted suicide I understand Bill Andrews: Yeah. Dr. Bob: It irks me because I think that there's nothing remotely like the suicide that most people think about, which is to end, you know, your life because of some emotional suffering or situation that you're in. People who are using this option, like you, are dying. I mean, you would choose. I'm sure that you would give anything, anything, to be able to not be in that position. Right? In which case you would be— the furthest thing from your mind would be taking a medication and ending your life. Bill Andrews: Absolutely. That's absolutely true and I know sometimes I throw the word suicide out and that's only because maybe because it's simple to say that word but I certainly like your definition a heck of a lot better than mine. Dr. Bob: I guess I took that opportunity just to insert my bias on that. Bill Andrews: Well, I agree. I think you're absolutely not. Dr. Bob: This is your experience and you can think about it or talk about it Bill Andrews: Right. Dr. Bob: Any way you want. Bill Andrews: Yeah. Dr. Bob: Bill, I have the advantage of having a little bit more knowledge of your background and who you are and I think this whole conversation becomes more poignant when people have a sense of what you've done. Could you share a little bit about your background? Bill Andrews: Oh boy. How much time do we have? Dr. Bob: Let's do the Reader's Digest version. Bill Andrews: Well, we'll do a real quick one, yeah. My grandfather's a general in the army. The Air Force. My father was in the military. I was born in Chicago. We moved to California in the '50s and eventually, my family ended up in La Jolla. I grew up right across the street surfing and enjoying the ocean at La Jolla Shores. Graduated from La Jolla High School. Got a scholarship to the University of New Mexico as the United States was preparing for Vietnam. I didn't do real well with that experience with the military side of my education. Anyway, I kind of did an odd thing. I just worked. I have a very broad, broad work history. Not very deep. I know a little bit about a lot of stuff. I've done engineering. I've done clothing manufacturing. I've made garments overseas. I did some advertising programs for Pepsi-Cola. I was on the cover of Surfer magazine if that makes any big deal. I used to motocross motorcycles. I used to race motorcycles. An avid sportsman, fishing. Loved education so this is why this program that you're doing is so fascinating to me. I'm absolutely enjoying every second of watching this go through the process. Raised three beautiful children. Actually, their mother did a much better job at raising them than I did. I just love learning about this and I am so thankful that we've progressed to a state where we can talk about these things. Dr. Bob: Yeah. Bill Andrews: You know, maybe my kids have a one- sentence thing they can say. Not something too bad. Dr. Bob: I would love to get a little bit of the insight from them if they're willing. No pressure though. Brian: Hello, this is Brian and just—my dad's always been a real go-getter in life and wants us to be the very best we can be and always wanting us to be improving and really to be exceptional. Of course, it's been very difficult to watch him go from a very active person and suffering through the loss of being able to use his body. Back on that comment about the suicide, I'm finding a lot of comfort from knowing that you know the cause of death is ALS and that we're able to make this choice. The aid in dying is just fabulous for us that this was passed in California and we're getting the help to do this and your guidance. It's either, you know, going to be that path or watching him really suffer and go through a long and much more difficult process, having a result in a very short time from now that we get to avoid with this. Dr. Bob: Yeah. Brian: Feeling very fortunate and very proud of my dad and very thankful we have this choice. Dr. Bob: Wonderful and I have to tell you, you know, that giving him the gift of supporting him is incredibly powerful. I've had the opportunity to be with many of the family members. The children, the spouses, parents of people who have done the end- of- life option and they are all so at peace knowing that they gave that gift and it didn't always start out— they didn't start out feeling supportive or comfortable with it by any stretch of the imagination but having come through that together, recognizing how desperately important it is to the person who's dying to have that support and to have people with them at the time, you get to go on the rest of your life knowing that you gave that ultimate and last gift. Brian: Yeah. Yeah. Dr. Bob: Good for you and thank you. This might be helpful for people. When your dad first—and Chris, if you want to chime in too—When your dad first approached this with you, what was your initial reaction? Do you remember? Brian: Well we actually brought this forward ourselves in working with him. We were looking at researching ALS and talking about what we wanted to do in the time ahead from diagnosis and we decided we were going to really come together as a family and we took a great trip together, a road trip, and we spent a lot of time together and had a lot of great conversations. Dad's friends from surfing—he's got hundreds of friends— threw him an amazing party. It was a celebration of life while he was here and that's the way Dad wanted to do that versus waiting until he was gone and having a big service and paddle out after he was gone, so that was an amazing day. We had a band, amazing food. It was a beautiful day at the beach. Dr. Bob: Wow. Brian: His friends made this happen down in La Jolla. We've really just taken this time to come closer together and have these great experiences. We were thinking about how this was all going to come to an end and we were going to ALS meetings and just really learning about it and part of that was just researching. I remember reading about it online and then we talked about it as a family and then, you know, it kind of went from there. Dr. Bob: Okay. Brian: Yeah, just exploring the options. We all have felt really good about it from day one. Dr. Bob: Great, so it kind of happened organically and a lot of times it's the individual who finds out about it or comes to that kind of decision, sometimes having been thinking about it for quite a while and it does take some finesse sometimes and time to get families onboard, so I'm glad that you didn't have to go through that. You were able to just, from day one, be united and working together, which is great. Bill Andrews: Yeah, I think in general we were 90 to 95% onboard in total from day one. My decision was I did not want to be kept alive and if it came down to not eating, not drinking or whatever, that was my chosen course. I wasn't going to put my family—I didn't want to put my family through a whole bunch of torture but a torture for me would be breathing help and eating help. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: And selfishly watching my bank account go from a very small amount to negative numbers. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: A lot's played into my decision, selfishly, on what I was going to do. Dr. Bob: I hear you. Bill Andrews: I appreciate them that they're going along with this. Dr. Bob: Yeah. Chris: This is Chris. I have one more thing to add to that. Dr. Bob: Great. Chris: I think in the beginning we were very curious about the disease and that curiosity led us to read a lot and also like Brian said, they started going to meetings. I was living in New York and I was pretty far away, so for me, it was more of like an academic research. Like what can I read and what can I understand more of? Once you start to dive into that space and you get like ... If you don't have a disease you need proximity to it to understand it and once you do, it sort of is like "this is awful" and you want to do everything you can to help. I think that for other families that might be going through this, I imagine there's a lot of avoidance of kind of really want to think about the end or "I don't really want to know too much about it”. But for us I think having, throwing ourselves into it, it gave us a lot more strength, I guess, to just keep moving through this process with him. Dr. Bob: Mm-hmm (affirmative). Chris: Because we know what's on the other side of it. We don't know how he's feeling but we're able to paint a picture of it by seeing how other people, what it's done to other people. Dr. Bob: Yeah. Now other people will be able to look and have, hopefully, hear this conversation, and the conversation can continue in various forms, but to see how powerful it can be to plan. Right? Not to avoid but to see what's coming, what are the alternatives, how do you make sure that at the end you feel like you have the control you need, that you always would want. The disease takes pretty much all control, at least physical control, away. I imagine knowing that you're going to be able to make this last decision for yourself, Bill, gives you a real sense of control back that's been missing. Bill Andrews: Oh, it absolutely does. I just want to add one more thing too. When I first was diagnosed I wanted to learn more and more about the disease. I'm reading, reading, voraciously and you know, it's all over the place of what it is, what causes it, what doesn't cause it and on and on and on. So I kind of, I started writing originally about my experiences on my blog and then I thought, eh, if people want to learn about the disease they can go to Wikipedia or something. People had asked and they go, “Well, how are you feeling today? You're moving your toes.", or something. I go, “Well, you know, maybe you ought to learn more about the disease yourselves and then maybe you'd understand where I'm coming from a little easier." Because it's all kind of basically the same, so rather than explaining to the same people every other day how I'm feeling, just, you know, make your own calendar and chart it yourself and they can make their own timeline or something. Dr. Bob: Mm-hmm (affirmative). Mm-hmm (affirmative). Brian: Yeah, my dad's real quick as well. Dad would always say, "Hey, if this is where it would stop, I could be okay. Where I still can stand up and take a few steps with my walker or be able to feed myself and go to the bathroom. Yeah, okay, I'm okay." Then every day we'd get progressively worse and you hit a new level and it'd be like "Wow, I didn't think I'd keep going with this but now that I'm here I could keep going a little more.", and it was just like, and I'm going where is the line? You know? Where is the final level where it's not going to be okay anymore and then it becomes a— there is a point where ... Because as Chris said, "Dad, we're researching." In the end Dad, he was consistent from day one. "I will not be in a feeding tube. I will not be in on a respirator. I don't want to be kept alive. If I have to be fully cared for and bedridden, that's not the quality of life I want to have and that's when I'm ready to go." So always trying to think about, well, at some point we're going to hit a point where you can't move your arms at all. Today he can't move his legs and he doesn't have the strength to do anything with his arms other than lift something that weighs just a few ounces. Pretty soon he won't have the ability to use his arms at all and that's very close so we're trying to stay ahead. We know that there’re only a few decisions left. You know, at the very end he's going to starve to death and go through a [inaudible 00:33:26. A difficult process or take this option, so it's been just always trying to stay ahead, but as the years evolved, choices and the days and the weeks and the equipment we need and choices to make has been—it's all in Dad's own journey. Dr. Bob: Mm-hmm (affirmative). Brian: But here we are and now we're all feeling really good about this choice. You know, given where we are. Dr. Bob: Yeah. Thank you. That was really awesome to hear and it's Dad's journey but you're a team and the obvious connection and bond that you guys share in his knowing that this isn’t—it's not going to tear you apart, it's not going to destroy you. That you are so together on it and seeing this is the compassionate option. I mean that's going to allow him to slip away so peacefully with that feeling of I don't know, completion or this ultimate sense of connection so that's really powerful that you've been able to create that for him together, all of you. Bill Andrews: Yeah, it's the compassion I think that is so important. You know, everybody can have sympathy or they can have empathy, but all I ask from people is you don't even have to understand it, just accept it as it is and when I tell you how it is, that's what it is. If you need any more information, go to Wikipedia. Go to WebMD or something, I don't know. That's the way I feel. Dr. Bob: All right. Hey, I have two more questions if that's okay and then I'm going to let you go. Bill Andrews: Okay. Dr. Bob: One of them is do you have any fear at this point? Is there anything about this that is causing fear or anxiety for you? Bill Andrews: Absolutely not. Not a drop of fear. Dr. Bob: Awesome. Great. Bill Andrews: No. This is like, you know— Dr. Bob: Oh, go ahead. Bill Andrews: Just a new adventure. A new adventure. Dr. Bob: Okay. That's beautiful. Bill Andrews: Anticipation, not fear. Dr. Bob: Great. I guess the last one is what would you like to share? I know it's not like you're out shouting from the mountaintops to the masses here but Bill Andrews: Right. Dr. Bob: Can you distill down your message? Bill Andrews, Big Pink. Bill Andrews: Surfing. Surfing nickname, no less. Dr. Bob: It's a surfing nickname. Bill Andrews: I guess now that I'm looking back, obviously you can't make every move the right move and just a couple of things. I think if you kind of put your life on autopilot— this may be a little weird but, kind of set a course if you can. You know, get a point A to point B and of course, then obviously by judgment is the right course. You know, a good course. Like a righteous course, and try to stay to that and every once in a while get, but because of your autopilot and that comes internally or God or your friends or whatever, kind of knocks you back into ... Excuse me. Back on course so you're not out there one month, two months, three months. You know, kind of lost out there and then you're looking at time bandits and everything. I think it's very important to make as much effective use of your time as you possibly can, and there again, you know I'm preaching to the choir and all that stuff, but I look back at my life. You know, you only have so many minutes in your life and, gosh, if you could just make 60% of those minutes effective and doing good again, all by definition, that would be my—that's my message to my kids. Kind of pick that course, stay on that course, and you'll look back and go, "Gosh, I've lived a good life and I'm proud of what I've done." Dr. Bob: That's beautiful. Thank you. That's really phenomenal. You guys, Brian, Chris, do you have anything you'd like to say about your dad or anything regarding this before we close out? Brian: Just that we love Dad very much and we're proud of him and proud to be your son, Dad. Bill Andrews: Thank you. Dr. Bob: All right, guys. Bill Andrews: Okay. Dr. Bob: Hey, thank you so much for your time and thank you so much for all you know, Bill, all you've brought to the world. I will be seeing you soon and looking forward to every moment that we have together.…

A Life & Death Conversation with Dr. Bob Uslander

1
A Nurse's Personal Story About End-Of-Life, Jillian Alexander Ep. 4 38:36

πριν 6 years38:36

38:36

A long-time nurse shares her personal story about her father's end-of-life experience. Hear what the aid-in-dying process was like for her and her family. Transcript Dr. Bob: The person I'm going to introduce you to today and have a conversation with is a woman who I haven't known very long but in the short time that we have known each other we've become very close friends and co-creators on this journey around exploring how to make the best out of life and helping to support people through complex illnesses and approaching the end of life. Her name is Jillian Alexander and I'm just going to tell you a little bit about Jillian and then I'm going to turn it over and let Jillian tell you more about herself. I think it'll be a fascinating discussion. Jillian has an amount of experience both from a professional standpoint and from a personal standpoint. We've had many conversations and I'm excited to introduce her to you. Before I go on and talk a little bit more about you, Jillian, why don't you just say hello? Jillian: Hello Dr. Bob, nice to talk to you. Dr. Bob: It's wonderful. Thank you so much for taking time to be with me. Jillian is a nurse, she's a registered nurse and has been for 35 years though if you look at her you would think that she actually finished nursing school when she was eight, so it's hard to believe that. She's been a registered nurse and has worked in both pediatric intensive care units and neonatal intensive care units, so a lot of her clinical work has been in the pediatric setting. In 2012, she completed a Master's of Science in nursing and she specialized in education. Now, she's doing a lot of educating of other nurses in obstetrics and pediatrics. Her personal experience with supporting people has been like many of us in the healthcare profession, we take care of anybody who asks us to and especially family members. Eight years ago Jillian's sister, Lauren, her younger sister was diagnosed with ovarian cancer and at that point Jillian took a leave from her job and spent three months with her sister when she underwent surgery with a port placed in her abdominal cavity so that they could administer chemotherapy directly into the area where the cancer was. She went to all of her sister's treatments and after that, her sister actually did really well, Lauren did well and had five years during which time she was in remission. But in 2014 the ovarian cancer returned and they started together as a family looking at treatment options, doing a lot of research, looking into clinical trials, traveling. Lauren was blessed to have fairly extensive resources available to her so she was really able to find the best care that was available at the time. Despite that, the cancer continued to spread and in 2016 it became apparent that the treatments were not effective, she was getting extremely weak, and having issues with bowel obstructions. That’s about the time that I was brought into the picture, so this was late in 2016. Jillian continued to live in the San Diego area, taking an extensive leave from her career, from the family that she had out there, and was an amazing advocate for her sister, to try to give her the best possible quality of life and support during what she knew to be the final phase of Lauren's life. Lauren passed away, I believe it was in January 2017, is that correct? Jillian: Correct. Dr. Bob: It was truly an incredible experience to be a) working that closely with Lauren and support her, but I was completely blown away and amazed by the level of commitment that Jillian showed by her sensitivity. We created something almost like a little hospital/hospice setting and we were able to give Lauren a very beautiful and very supportive environment for the final weeks, months of her life. Since that time Jillian’s her life has taken a completely different turn and I'm going to turn it over now and I'm going to allow Jillian to talk a little bit about what that experience was like and what's happened in her life since then. Jillian, a) thank you for being my friend, b) thank you for what you bring to people, and c) let's hear what's been happening for you. Jillian: Thank you, Dr. Bob. That was really sweet. The first thing I really want to say is that, even though I had been a nurse for 35 years, I really didn't know what to do to help my sister. She was so ill, she had a couple of extensive stays in the hospital where they would do another CAT scan and ended up putting a port into her lungs because they had to drain fluid from her lungs every day so she could breathe. I was really struggling to find her palliative care. I didn't really know exactly what it was and my sister was a real fighter. She didn't want to hear and she would say, "I hope they don't give me my hospice card this time." The “H” word was a bad word and so I didn't know what to do because outside of hospice how do I find someone to help me? I started searching and I had a friend, who happens to be a palliative care physician, who said, "They have to have palliative care, ask them." I started asking her oncologist to get me palliative care and they set me up for an appointment. But it was three weeks away and my sister was so sick, and I didn't know what to do to help her because she couldn't be at home in her condition without, like Bob said, a hospital type room in her home. I wanted her to be at home and she wanted to be at home. When they gave me Dr. Bob's phone number and I had the first conversation with him, I knew right away I had found the right person. I can't explain how desperate I was and how many dead ends I was facing when I tried to advocate for my sister even something as simple as helping control her pain. Because she had a bowel obstruction, she couldn't take medicine by mouth, and I knew that a fentanyl patch would help her, but the oncologist said she had to be in hospice to get a fentanyl patch. I said, "Well, why?" I couldn't get her the help. When I finally met Dr. Bob, within 24 hours we had her at home, on a fentanyl patch, with IV medication to control her pain when that didn't work, and everything we needed to keep her comfortable. Every medication and it changed everything from this aura of suffering and fear to there's somebody here that's going to help us go through the next phase of our journey. Finally, someone ... Honestly, Dr. Bob, you were the first one who said to my sister, "You're too sick to have treatment. Maybe if you get stronger,…” because she just wanted treatment, treatment, treatment, and nobody said that to her. Nobody said you can't have treatment; it was a relief to stop trying to find treatment somewhere. She was ready to go to Mexico and try anything she could because, like you said, she had the resources and the fight in her to try to stay alive. But you can't always win. Sometimes you're going to cause more suffering than you need to and that's where you helped us to make a bridge, so to speak, for that next experience, and made it palatable, and made her understand and accept what was going to happen. Dr. Bob: Jillian: It really was beautiful. Dr. Bob: From my perspective, I didn't know her that well, and we just met, and it was a really challenging. It was challenging on many levels but, knowing what a fighter she was and hearing from everybody and her husband who would not hear anything other than full charge, whatever it takes we're going to do it and we were not going to quit. I don't think we mentioned how old she was at the time. She was very young, she was 53, is that- Jillian: Mm-hmm (affirmative). Dr. Bob: I knew that she wasn't ready to just throw in the towel, but I think as we discussed the best approach we had to keep hope alive for her that there was a possibility that she could resume treatment at some time so we never ... I wouldn't say no treatment is going to help you. It was really no treatment is going to help you right now and it's likely to harm you. Now, the focus is on finding a way to be comfortable, to build yourself back up if that is possible, and we'll do everything we can to keep that possibility open. She was incredible. She had a naturopath coming in, she was getting infusions of amino acids and other types of supplements that would be beneficial. She had a masseuse coming in and helping to keep her muscles relaxed and she had a team. You were a major part of building this team, but I think what you are lacking and what I was able to come in and provide was a leader of the team, a captain of the ship, to help coordinate all the things that needed to be put in place and keep you and the family from being so incredibly overwhelmed. It was a gift for me and you stepped up like nobody I've ever seen. An incredible champion for her in an incredibly complicated environment. You were my teacher as well and I think. Jillian: I think what I would say about that is sometimes you have to meet patients where they are. It's not about you; it's about the patient and, even though I would've dealt with it differently because I know so much and I knew what was happening, we really tried to meet her where she was. She knew she was dying; she would say little things like, "I don't want a funeral,”—just blurt it out all of a sudden—or other things that she would want to happen if she died. She told me her dying wishes for her siblings and family members, but she didn't want to accept it and actually was taking a medication up until two days before she died that was maybe going to help her. I supported her in that too because I felt it was her journey and her decision to try as hard as she felt she wanted to try. Dr. Bob: Yeah, and she wasn't doing it for herself. She was doing it for her family because she had children, the youngest of which was 12, and leaving him was the main thing that was causing her so much angst. We weighed that when we looked at the pros and cons of that medication. We all came together and we felt like, well, this is a medicine that's probably not going to cause much harm. It's unlikely to provide many benefits, but emotionally, psychologically there was value in it for her. Jillian: Right. I actually felt like the medication might cause her harm but that it was still her decision to try to take it if she wanted. Dr. Bob: If it's okay to mention—one of her wishes, before she died, was to see you married, right? Jillian: Mm-hmm (affirmative). Dr. Bob: This was a pretty special moment because ... Is it okay if we share that? Jillian: Yes. Dr. Bob: Jillian had been divorced for some time and she had a man in her life who she was anticipating marrying at some point, but Lauren, she wanted to see her sister married and she didn't want to miss that. Literally a week before she died, she coordinated the family to come together at the home and was able to see Jillian and her husband share their vows and get married, which was just an incredibly beautiful experience and I was honored to be part of it. Jillian: You were the minister. You said, "And the power invested in me by Lauren," but she had been so sick I didn't know if she was going to be well enough to be participating. But she had this rejuvenation and had more energy than I'd seen her have in probably two weeks. Stayed up for four hours, and had a smile on her face all night, and was so happy. I'm not really sure why that was so, so important to her. I think she wanted my family, my mother, my siblings, my children to love my husband as much as she had come to love him. I think she wanted them to accept him and I think she wanted to thank him because he also had come to San Diego and was doing whatever she needed because that's the kind of person he is and she had just fallen in love with him. It was really amazing. It was New Year's Eve and I remember saying to her, "Why don't you want a normal dying wish? Like having Bon Jovi come to your house or something?" I was a little uncomfortable with all of the attention but it really was a beautiful night and I think any of us who were there will never forget how special it was. Dr. Bob: That's for sure. I will never forget it. She did, she rallied, and she was beautiful and radiant, and it was, I think this final celebration that she was able to create and make incredibly meaningful. Then she, like we said, she died less than a week later. You were with her there, supporting her in her last moments. Let's talk a little bit about what's happened for you since that time. Out of this tragedy that was able to ultimately be a beautiful and peaceful end-of-life experience, what's happened for you since then? Jillian: After that happened I think that what came together for me was the challenge of finding you and finding a way to give my sister a peaceful death at home. It started to really bother me that people were dying in hospitals and ICUs, and families were being asked silly questions like, "Do you want us to do everything with your 85-year-old mother who has pneumonia," and people were dying on ventilators. It really started bothering me that we weren't allowing people to be at home. I did a lot of reading and I thought, "I think that this is really what I want to do. I want to help people at the end of their life," because being at the end of your life and having a peaceful death and exit from life is as important as being born, which is where I practice on the other end of my spectrum. I do obstetric clinicals and I take nursing students to see deliveries of new babies. I feel like entering the world and exiting the world are both equally important and we are not doing a good job at helping people exit the world because our education with nurses and doctors is focused on not letting people die and keeping people alive rather than the inevitable. Since everybody's going to die, we need to spend a little time thinking about how that should happen and how we might want it to happen for ourselves. I'm getting my advanced practice degree in palliative care and that's what I really want to focus my career on because it's so important. I'm trying to get it embedded into nursing curriculums so that nurses learn about palliative care and how to get those resources at the end of life and don't have to feel so alone the way that I did when my sister was so sick. Dr. Bob: I think that's so beautiful and I know that Lauren is proud that her experience has motivated you to follow this passion, to follow this guidance, and put yourself in a position to be able to truly help people who are so desperate for the kind of support that you're talking about. I'm thrilled that someone like you —because I've seen your dedication, a senior level of commitment—is going to be entering this field to be furthering the mission and furthering their education of the next wave, the next generation of nurses and doctors. Good on you. Jillian: Thank you. Dr. Bob: You shared with me you have some other personal experience prior to what you went through with Lauren and I wanted to just ask you if you would share it. because I think it was a poignant story and it brings up a lot of the issues that we're still facing in most of the country with respect to helping to honor people's wishes at the end of life. There are now a few states including California that allow physician aid in dying for people who are competent and terminal, but the majority of the country is still without that support and the laws that allow that. You shared with me a bit about an experience with your father that highlights the challenges that come when somebody knows that they're dying and doesn't want to allow the condition to decimate their body and take them down the way that it usually does. Can you share a little bit about that experience with your father? Jillian: Sure. In 2000 my father was 71-years-old and I was living on the East Coast. He was living in California and he got sick, really sick and he was told that he had some type of problem with his liver but that he could get a liver transplant. My dad told me, "I think I'm going to be okay but I might need a liver transplant." The liver transplant is a huge operation especially for someone who's 71 years old. I hadn't seen him but was planning to go see him and my mom called and said, "He's so sick; I need you to come home right now." She was really freaked out and so I flew home that night and when I saw my dad he was extremely jaundiced and I knew he was sick. It was a Friday night that I got home and I was just really shocked. He had lost maybe 15 pounds in a couple of months since I'd seen him. His skin was bright he was weak. He had a lot of his medical records there, and I started reading them on Saturday. I thought, "Oh my gosh!” He had a very elevated liver tumor marker, alpha-fetoprotein levels. Back then, Web MD was a little bit newer and Dr. G. wasn't as advanced as he is now, but I could tell that it looked like my dad had liver cancer and so I decided that we needed to take him to UCLA where he was being treated. I called to get him admitted through a friend of mine that worked there. She said, "Sure. Come on in." I was getting my dad ready to go and she called me back and said the liver surgeon on call wanted to talk to me. I said, "Absolutely," and when I talked to him he said, "Your dad has hepatic cellular cancer," which is liver cancer, which is really bad. I knew it was really bad but I didn't know how bad. I said, "Well, what are we going to do? How can we treat it?" Imagining my dad was going to get chemotherapy or whatever they do for these bad cancers. But he said, "There's really nothing we can do and I don't really think your dad will even live for two weeks." I was shocked and I said, "What are you talking about?" That's a whole long story, but the point is that we stayed in town, my dad had a liver biopsy, and we found out that he, in fact, did have liver cancer. When I found out my dad had liver cancer from the doctor at UCLA it was a Sunday and it happened to be Father's Day but the doctor told me my dad only had 10 days to two weeks to live and I thought, Well, I have to tell my dad right away. He hardly has any time left if this doctor is right and he deserves to know.” On Father's Day, I told my dad I had bad news for him and it looked like he had liver cancer and there wasn't anything they could do to treat it. My dad got the biopsy and when he saw that valid and true he was so brave and he said, “Well, Jillian, not very many people get to know when they're going to die and how they're going to die.” He privately told me, "I don't want to be alive in a coma for five or six days. Will you help me?" He was too weak and too tired to do it himself. He asked me to help him get a lethal dose of medication so that he could take it when the time was right. He said, "I don't want you to feel guilty and if you don't want to do it I understand." Of course, I wanted to do it, it was my dad. I would feel the same way, but in 2000 this was not legal in California so I talked to an oncologist and I found out what he told me would be a lethal dose of an opiate and basically an anti-seizure medication. He told me how it would work. I discussed it with my dad, we got the medication in an elixir form, and it was about two ounces, and we put it in an unlabeled container vial by his bed. I didn't feel bad about it at all. I just wanted to make sure that my dad would know when to take it or that he wouldn't suffer, that I wouldn't have to make those decisions, and he kept telling me, "Don't worry, I'll know when to take it." One morning when I woke up he had been really sick the night before and every morning I would open the door and see if the medicine was there, open the drawer and see if the medicine was there. One morning when I opened the drawer the medicine wasn't there and I knew he had taken it. Other people in my family didn't know because my dad didn't want them to know. It was a really personal decision for him. He asked me because I'm was a nurse and he knew I could figure it out but I wanted to honor him. He didn't want my mom, for example, to know that that was what he did. He just wanted to spare himself and her really the suffering of being in a coma and all of the things that go along with that. He died at the end of that day. He died not as quickly as I would've liked. I kept thinking, "I wish I had an IV of Valium or something to help him," because he was struggling and it was really, really hard. I didn't have you then and I didn't have the medicine then. It was a little more drawn-out than we probably would've liked but I was with him when he passed and it's similar to when my sister passed. I felt this amazing energy of almost like his body floating across the room. I knew when his spirit left his body if that makes sense. He wasn't dead yet and neither was my sister in that their heart was still beating, but I knew they weren't there anymore. Those are the two most personal experiences I've had, but I have had to be with children and babies and families as they died and there is something very spiritual and magical that happens especially when someone isn't suffering and all of those horrible things, choking and dying in that really difficult way. Everybody's going to die someday. I think you just need, depending on if you have a difficult diagnosis, what you're comfortable with. As palliative care professionals and patient advocates, we need to support patients wherever they are on that spectrum and we need to work to make sure that what is legal to do in California is legal to do in other states or make it easier for people who have that option to choose it. People do choose it in other ways. People literally blow their heads off to stop their suffering or to prevent suffering, and it doesn't have to be that way or I don't believe it should have to be that way is my personal belief. Dr. Bob: As you know, that's my personal belief and I completely agree. We hear about it people are finding more violent and, unfortunately, ineffective ways to try to end their suffering. Taking overdoses and things that just end up creating more trauma, and more struggle, and guilt for the family. Jillian, thank you so much for sharing that incredibly personal story. Your dad was a physician, right? so he knew what he was facing. I believe that he gave everybody a gift by making that decision. I just want to say I think you're an amazing human being and one of the most compassionate and sensitive people I've ever met. I do believe that we will have many opportunities to collaborate and to work together in support of progress in this arena, and supporting people through challenging illnesses, and having a more peaceful and beautiful end-of-life because it is possible. I truly believe that everybody can have a peaceful and dignified death. We are part of the answer and part of the tribe of people who are working towards making that possible for more people and raising awareness around that. Thank you for being part of the tribe. Dr. Bob: I think this has been a wonderful episode and I'm sure that many people have been touched deeply and learned some really valuable things. Anything that you would like to say in closing before we finish up? Jillian: I think I would just like to say that there are some really wonderful resources and books that are important for people to read whether they're healthy and young or they have an illness because it isn't something that you want to give no thought to until you're put into the position of needing something. You want to think about it and have conversations with your loved ones. I would say that 'Being Mortal' by Atul Gawande is a wonderful book about life and death. He also describes his personal experiences with his parents and as a physician. On the Internet [Andre-as Val-an-dez 34:26 has a YouTube called 'The Conversation', which talks about having those conversations with your parents, with people that are older in your life so that you know how to support them and what they want. What you'll find when you do have those conversations is nobody really wants to die on a ventilator, unconscious, in a hospital. People don't choose that. People end up getting that because doctors are like I said, so much better at keeping you alive than they are at allowing you to die. The other thing that I would recommend is ' Extremis ,' which is a short documentary, which really shows what end-of-life can really be when you are in a hospital and intensive care situation. There's also an article called ' At His Own Wake, Celebrating Life and the Gift of Death, ' which is in [The New York Times, which is a beautiful article. I can send you the links to all of those so you can post them on your website if you like. Dr. Bob: Absolutely. Jillian: They're just some nice things for anybody to read and be aware of because the fact of the matter is we're all going to die someday, no one's gotten out of it yet. You have opportunities to be proactive but you need to have conversations with people so people know what you want. Dr. Bob: Awesome. That's wonderful. Thank you. Those recommendations, resources we will have available on our website as well. Just having shared that information for those who follow-up and access those resources it can have a profound impact so you're continuing your beautiful work and supporting people. Again, I want to thank you for taking the time and sharing so deeply from your heart. I'm so glad that you and I met. I am forever grateful to Lauren for allowing me in her world and being part of the team and to you for being such an incredible partner in that and for everything that you're doing and will do. Thank you, Jillian, and hopefully, we will have an opportunity to have you back on here and explore more of what's happened along your journey. Jillian: Thank you. It's awesome to be working with you, Dr. Bob, and to have somebody who's brave enough to advocate for patients and to allow what's legal in California to happen because a lot of people it's too controversial for them to want to touch and that's not helping the people who would like to have access to these legal remedies. I commend you for your work and, if it weren't for people who are willing to stand up in tough times, things would never change and I think that we really need to change how we're letting people die in our great country. Dr. Bob: You're doing it; you're not just talking about it, you're doing it. All right, you take care and we'll talk soon.…

A Life & Death Conversation with Dr. Bob Uslander

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From Attempted Suicide to Intentional Living, Diane Forster Ep. 5 33:43

πριν 6 years33:43

33:43

Diane Forster is an Intentional Living Expert and author of "I Have Today". Diane talks about her attempted suicide, how she changed her life and is now helping others. Hear what helped turn her life around. Contact Diane Forster website Transcript Dr. Bob: I'm here with my guest, Diane Forster, and I'm really excited about having this conversation with Diane. She's an incredibly dynamic woman. I was only recently introduced to Diane through a mutual friend, and this friend somehow knew that Diane and I were kind of kindred spirits and would hit it off and have a lot in common, and I'm excited about where this friendship is going, and I just immediately felt that Diane would be somebody who our listeners would really like to hear from. She has a very interesting story. She's made quite a dramatic shift in her life that was inspired by things that she'll be willing and happy to share with you. Diane, she calls herself an intentional living expert, and she's a coach, mentor, and facilitates masterminds. She is very well educated and trained in NLP and human interaction technology. She works with clients privately in their professional and personal goals, has really helped transform many lives, and it really comes from having hard her own transformation in her life. She's an author, a best-selling author of a book called I Have Today, Find Your Passion, Purpose and Smile Finally, and is the founder of I Have Today, which really focuses on helping women living more empowered, fulfilling lives. Interestingly, Diane's also an inventor, and I will let her share more about how that has happened and what being an inventor has brought to her life and means to her. So Diane, thank you so much for being here. I'm really looking forward to this conversation. Diane Forster: Thank you so much, Bob. Thank you for having me. I'm honored to be here, and I feel the same way, kindred spirits immediately. Dr. Bob: So, we're talking about life and death. As you know, my focus is on ... I mean, I think we have a lot of alignment. My focus is on helping people live a more peaceful and meaningful life in the face of challenges. I didn't necessarily come to this calling, or I didn't find it, it didn't find me for a while, but once it did, it's been driving me, inspiring me, pretty much every moment of my life, and it's about having a meaningful life, and it's about having a peaceful and self-determined end of life. So, you ... In our initial meeting, you really kind of blew me away with where you came from and what you were experiencing and where you are now. So, would you be willing to share a little bit about that? Diane Forster: Of course. I'm happy to. You know when I was in my late 20's, I got married, and I married a man that, we weren't really in love with each other, but we loved each other, and it just seemed like the timing to ... It was the time of life to do that, and I grew up with a mom and a dad who really, didn't really love each other ... Weren't in love with each other, but did love each other. Let me say that better. And so I never really witnessed any real romantic, intimate connection between the two of them, so I grew up thinking that's what marriage looked like. So, of course, I attracted a man into my life who was similar, and while we had a deep love for each other in some ways, we didn't have that connection, and I struggled in that marriage for many, many years, trying to make it work. And what was happening to me is I just didn't want to walk away. I didn't want to be a failure. I didn't want to give up on it. I thought I could make it work, and it just was not working, and my soul and spirit were chipping away, day after day, month after month, year after year until many years into it, almost 20 years into it, I just couldn't take it anymore, and one night, in June of 2011, I attempted to take my life. I just thought I can't feel this pain and loneliness anymore. And so what happened to me in the bathroom that night, was I had two full bottles of pills in my hand, and I was ready to end it all, and they got knocked out of my hand, and the voice that I heard told me, "You are not ending your life this way, Diane. You need to go get help. You need to tell your story because you need to help others." And being a very intuitive person, I just threw my hands up and said, "Well, you need to show me the way." And so, that was a pivotal moment in my life, and that lowest, lowest point for me was the thing that needed to happen for me to catapult me out of that state and out of that place in my life and really reach out for help. And so I did the next day and reached out to a therapist, and I said, "I need your help. I need to change my life." And so it took about six more months to get out of that relationship, but when I did, after a brief grief period, I went into a deep introspection and personal development and spiritual awakening and ownership of my part of that relationship not working and where I was in my life at that moment, the condition of my life, and I decided in that moment, I want an extraordinary life. I don't want to live this way, and so I really delved deep into everything that I could get my hands on to read and to watch and to attend and listen to, and what was happening to me, Bob, was I really starting to heal in a very profound way and live in a very different way than I had been living before. I was alive. I was awake. My spirit was nurtured and felt loved and what it was that I came to was I had no self love. I had such low self-esteem and low self love for myself, and I developed it in this process. I started writing a lot. Getting all these downloads, and so I would get this hits of inspiration in the middle of the night, and I would write poetry stories, and one night, in August of 2013, I woke up with a poem I Have Today in my head, and so I got up. I wrote it down right away, and it was I have today to love and be loved. I have today to start fresh anew, and it went on and on and on, and when I finished the poem, I looked at it, and I said, "This is way more than a poem. This is a movement. This is what God was talking to me about that night in the bathroom in June of 2011." And that's the moment that the idea of I Have Today was birthed where I really wanted to help and support mostly women because I knew so many women were feeling the same way I was, and I see this every day, so that was really where I started back in June of 2011 and where I am fast-forward to today. I'm now living a life that I've completely manifested, and I've completely reinvented myself, and am living the life of my dreams really intentional and purposeful every single day, and now I help others to do the same thing. Dr. Bob: Wow. I don't know that there's really another word that would actually be appropriate right now, but wow. I mean, you shared this with me the first time we met, and I remember having this feeling, the same feeling, but I'd forgotten part of that story, and it just kind of came back to me powerfully. So number one. Good for you. Phenomenal how beautiful that you went from this place of despair where you were really on the brink of death to where you are now, and not just having sort of reinvented yourself and found your own bliss, but taking that experience and taking that incredible pain that you were going through and using that to fuel the career that has now, I'm sure, been able to inspire and support many, many other people in finding their path out of that. Diane Forster: Yes. Dr. Bob: And not just taking people who are in despair and considering suicide, but taking people who are living an average life or what they feel is a mediocre life and being able to decide that they're going to have an extraordinary life too. Diane Forster: You said the magic word. It's a decision, and it is a choice, and it takes a lot of help. It takes a lot of support, but yes, it is something that you really have to decide for yourself, how do you want to live every day? How do you want to feel every day? And so along my path with it, I've developed a lot of different processes, a lot of three-step processes that I've made it easy for me to catch myself when I'm not living in the present moment and to help and support me on this journey to keep that positive momentum going every single day, moving it forward, feeling alive, feeling fulfilled, feeling the expansion and the growth and all of that. For me, I could've never imaged that my life would've taken the turn that it's taken, but I feel such fulfillment and joy every day helping and serving others to help them create the life of their dreams. Dr. Bob: Yeah. Well, so we were so aligned there, and what's interesting as well is that our journeys have been parallel. I don't remember ever being at that place of despair. I've been married for going on 30 years, and I love my wife more today than I did when we first got married, and I feel very incredibly blessed. It hasn't always been easy. I would be lying if I said that there haven't been challenges and struggles along the way, so I haven't had to deal with that, but I've had career burnout and stress and of course, my own struggles, and in 2011, is when I decided that I'd had enough of the life that I was living and settling for and decided that I needed more, and that's when I got inspired and started doing a lot of soul searching and a lot of reading and a lot of self development and became more spiritual and started on this journey, which has led me to the place where I am now. And then you mentioned August of 2013 as a ... What happened on August 13, remind me? Diane Forster: That was the birth of "I Have Today" when I wrote the poem. Dr. Bob: Okay. That's when you woke up with that poem. So, in April of 2013, just a couple months before that, I had my epiphany where I became very clear that I'm here to help people die, and from that moment on, providence has opened up incredible opportunities and allowed me to then take who I've become and what I've learned to be in this place of supporting people through complex and terminal illnesses. We are working in a different model in many cases with different people, but I feel like we've both received something so meaningful and deep that has allowed us to live with this ... To live on purpose. Diane Forster: Yes, yes. Dr. Bob: To live on purpose. To have recognized that we're here for something bigger and that we just put ourselves into it, learn what we can, and become vessels for people to have the kind of life that they desire and ultimately the kind of death that they wish for. Diane Forster: Yeah. That's beautiful. Really beautiful. Dr. Bob: So, thank you so much for sharing that, and I know I still have stills. I don't know ... When I get goosebumps and chills, it really feels to me that this is a universal truth, there's something really deep, connection that's happening. Diane Forster: Well, I feel it too, and it blows me away. It's cause it's so big. It's so big. My mission is so big, but I'm open to it and receptive to it and willing participant in the journey of it, and why not me? And why not you? This is our ... This has become our path. We've discovered it, and our mission on this physical journey is to do this sort of work and serve in such a powerful, and I feel blessed to be chosen. I know you do too. Dr. Bob: Yeah. Yeah. And I think one of the things that I'd like to put out there for everyone who's listening is we're not any different than you. Right? Diane Forster: Exactly. Exactly. Dr. Bob: You have a path. You have a calling, a purpose that's within you wanting to get out, and if you don't feel it yet, if you don't know what it is, keep looking for it. Keep searching. Keep reading. Keep meditating. Change things that aren't working for you because you're no different than us. You have the ability to have a major impact and to feel like you're in the flow of the universe. So that's what I wish that. Interestingly, I put a post on Facebook; I think it was yesterday about this. I went to buy my son a bicycle the other day. He's 11, and it was a birthday present, and I feel bad because we had put it off for a couple weeks, and he kept asking, "Where's my bicycle?" Well, it's coming. So I went to the store finally to get the bicycle, and the guy who was behind the counter was really friendly, and at some point, he just said, "What do you do for a living?" And I said, "I'm a physician." And he said, "Oh what kind of physician?" And I said, "I help take care of people in their homes with complex and terminal illnesses and make sure that they have the most support and the most peace and comfort possible." And he asked a couple more questions about that, and the kind of dragged out me that I feel like it's my calling that I'm doing what I'm here to do. And he was so ... He immediately kind of latched on to that, and he said, "What does that feel like? I want to know what that feels like because I want to be following my passion. I want to know what my calling is, and I think I might know, but I'm struggling against it." And so he emailed me, and he asked me if I'd have lunch and talk about that further. So it's just another example of when you're living in alignment with your purpose, and what you're here to do, people see it. They feel it, and they're drawn to it because that's what they want as well. Diane Forster: They do. They want to feel alive. They want to feel purpose-driven, and this is a lot of the work that I do too. I do these transformational sessions with people as well because they feel the pull. They pull the call, but they can't identify what it is quite yet, but they know they're meant to do something more with their life and their time here on this planet. They know it, and they feel that gap, that missing link, that piece there, and I get it. I see it every day with people, and I work with people all the time on it because, as you know, now that you're living it, me too, how it drives you. You don't drive it. It propels us forward. And you're right, Bob. Every single person has a purpose, and most of our purposes are defined from our pain. Like mine was defined from your pain, and yours was defined from a frustration and a pain point as well, and that's really where it comes from is through your pain, you might be able to identify what your purpose is. Dr. Bob: So that's where you need to start the search. Diane Forster: Start. Yes. Dr. Bob: Not to give up. Not to feel sorry for yourself, not to stay down and lick your wounds, but to use that as the fuel to inspire, to catapult you towards where you're meant to be. I love that. I feel inspired because we're talking about this concept. I read to my team yesterday. We have team meetings, and I have myself, my nurse practitioner, nurse, outreach director, practice director, and we're all very much on this path of ... We're all just incredibly excited about what we get to do every day, what we get to bring to our patients and to our families, and I read them this excerpt, which I'm sure you have read from Mary Ann Williamson, so I just feel like now would be a good time to do that. Diane Forster: Okay. Dr. Bob: To take a moment here and to let people who have not heard this excerpt from ... It was actually read by Nelson Mandela in his 1994 inaugural speech, and it's called ... I know you're familiar with it. It's called Let Your Light Shine. Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves who am I to be brilliant, gorgeous, talented and fabulous. Actually, who are you not be? You are a child of God. You're playing small doesn't serve the world. I want to read that again. I love that. You are a child of God. Your playing small doesn't serve the wall. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We were born to make manifest the glory of God that is within us. It's not just in some of us. It's in everyone, and as we let our light shine, we unconsciously give other people permission to do the same. As we are liberated from our fear, our presence automatically liberates others. Diane Forster: Just love it. Of course, I love it. Dr. Bob: I know. Diane Forster: In fact, it's my favorite book. That book was so instrumental on my journey, a return to love. It was incredible. Dr. Bob: Me too. It's right up there on top. So phenomenal, incredible. Well, let's ... This is a life and death conversation, and we've been talking a lot about life, right? Diane Forster: We have. Dr. Bob: And I think that's appropriate. In this conversation, the majority of what we talk about is going to be about life, how to enrich life. How to have a fulfilling life. How to get through the fear and have the most joy and meaning and life, but the death part of it can't be ignored. Diane Forster: Right. I agree. Dr. Bob: And so for me personally, that sort of the punctuation mark. I see that we have this amazing life, that we have all this opportunity, and death is sort of the finale. It's the grand finale. We need to be celebrating death, life too, but celebrating death instead of fearing it, developing a more comfortable relationship with it, and preparing for it. Diane Forster: Right. Dr. Bob: And then, we get to have a more peaceful fulfilling life without having to worry so much about what comes at the end. Diane Forster: I couldn't agree more. I could not agree more with that, and I have had my own experience with death. I lost my mom. She was 53 years old, and I'm actually 53 right now, so I can't even imagine that experience for her. So that was over 20 years ago, and she passed away from colon cancer, and nowadays, it would've not taken her life, but back then, that was her path, that was her journey, and I noticed a lot of things transpired within my family and our nucleus during that time because my ... We were living in different states, but what happened in that journey and that time together for all of us, it really does bring out the best and worst in people. When I say that, I don't mean worst like the bad in them. It's just their level and capacity of dealing with something like this, something so big like that, and so a lot of what I teach is in my processes is about that every single moment of your life is a gift, even those different moments, and the way my mother got sick in her journey and her passing was such a gift in my life. I felt her love. I knew how much she loved me. She knew how much I loved her, and what came out of that was my father and my sisters and I became incredibly close. Now we were close before, but we came incredibly close and formed family traditions that we've been carrying on. My kids have grown up with them. My nieces sand nephews have grown up with them, and it really changed our relationship. I told you I'm really intuitive, and I believe it was my mother who knocked the pills out of my pills that night without question, and what I'd want to say to your listeners is that even though they cross over, and they die, and they stop their physical experience, their human experience, they are still around and aware, and you can still have a relationship even though you can't see them. You can still feel their presence and their essence around you, and that it's their journey. It's their path, and there's really nothing you could've done about it anyway. It's that guilt that we take on, but that's their contract with their experience of how much time they're supposed to have here, and so just to live intentionally, live in the present moment, and really just embrace them for exactly who they are and what their journey and their path is. So anyway, I just wanted you to know that I've had first-hand experience with losing somebody that I loved deeply, early on in my life, and what I got out of that experience for all of us. Dr. Bob: Thank you so much for sharing that. I could actually almost feel your mom's presence as you were describing that and talking about how she impacted that ... How she knocked the pills out of your hand. I believe that as well. Diane Forster: Yes. Dr. Bob: You know the interesting thing, what you were saying about people being more present with you after they pass. I had that same feeling with my parents. When they were alive, and both my parents died in the past two or three years. When they were alive, we were very close, and I was fortunate that for the last seven years of their life, we lived really close to each other, but I would only connect with them when I called them, or we were together, and we were either talking on the phone or together in person, and that's when we would be connected. Otherwise, I kind of felt like I was on my own, and they didn't really know what was happening in my life, and I can kind of get away with stuff. Diane Forster: Right, right. Dr. Bob: After they died, each of them ... And they died about a year apart, but after they were gone, I felt so completely aware of their presence all the time, that they were no longer ... There as no longer any disconnect. There was no longer any separation which means that they were there, aware of everything that I was doing, thinking, saying, and I became a better person because I felt like I couldn't get away with anything anymore, and it was really ... It was so comforting for me, and also a little bit disconcerting. Diane Forster: Right, right. Dr. Bob: You know, you can't get away with anything anymore. So, of course, I would rather have them physically here so that I could touch them, hug them, and have that type of connection, but I know that we are not separated. Diane Forster: No. No, and there's only love. That's all that they have for you is love, so don't worry about not getting away with anything. They don't care. Dr. Bob: I get it. I feel that too. There's a little bit of that kind of self, just self regulation or whatever, and I guess I use it. Have you heard about the idea of living your life as if you're always being video ... As if the whole world is watching. Diane Forster: Yes, yes. Dr. Bob: And I can imagine that they would get a little old after a while. Diane Forster: Yes, yes. Dr. Bob: But mostly. Every once in a while we got to turn off the video. Anyway, I feel like ... Well, first of all, everything that you've shared has been incredibly valuable, and do you ever ... In your work with clients, do you ever approach issues or concerns about death and where that might create blocks or anxiety or fear for them? Diane Forster: I do. I do actually. In fact, a recent client of mine is caretaker to her mom, and a lot of guilt and challenges come up around that for her, so yes. So I do work with that, and I do my part to really have her just own her journey and her piece of it and to value the relationship that she has with her mother and see her mother for who she is, and that she is the same person she has always been. That spirit is still the same, and that there are challenges that come up, and I'm sure you see this all time. When you're dealing with something like this ... Like I said, it brings out the best and worst in people, and some people just really don't know how to process that in a way, and so I do a three-step process called breathe, think, praise, and it really allows you to let yourself off the hook and let the other person off the hook no matter what it is, and just breathe in the moment. Take the other person ... Don't take anything personally, what's coming at you, and then allow them to be in their grace of exactly who they are, doing the best they can, in that given moment because that is really what they're doing. That is the best that they have in that moment. So I'm dealing it more with the ... You do too, but I haven't dealt with the crossing over quite yet too much, but what they're still alive and dealing with those situations and the stress that comes along with that. If that makes sense? Dr. Bob: Totally. It totally makes sense because your principles are applicable for every phase of life and every type of challenge that people are facing dealing with illness and dealing with people who are dying is obviously one of the most substantial challenges that any of us ever face. Well Diane, I kind of feel like we can just basically stay on the phone and have this conversation for hours and hours, and I will relish the opportunity to do this again, both in this format and in person and any other way that we can connect because I do think that we're kindred spirits, so it's wonderful. Diane Forster: Absolutely. I'm happy to do it any time. Dr. Bob: Great. So I know that there are people listening who are resonating with your message, with your style, with who you are. I would love for them to have a way to connect with you. So can you share how people can connect and anything else you would like to share about how people can gain value from what you've created? Diane Forster: I'd love to. One of the best ways to get ahold of me is go to my website at DianeForster.com . And then on Facebook, I'm at I Have Today with Diane Forster. And then all other social media is here . But what I'd like you to do is, I have a freebie on there, it's a great gift, three tips on how to get everything you want. So all you do is scroll down and add your name and email address, and it'll get delivered to you, but I have different products and services. I do transformational strategy sessions. I also do a personalized mantra with a session. So if it's somebody who mediates or wants to meditate but hasn't really found their thing that's fitting them, what we do is I take ... Through our strategy session, I put together a personalized, customized mantra just for you. It's specific to you and your life, your fears, your doubts, your goals, your dreams. All of it. So just different things like that, that I do that are really focused on that person's individual needs. Dr. Bob: Fantastic. Well, sign me up for that one. Diane Forster: Okay. Dr. Bob: I want some of that.…

A Life & Death Conversation with Dr. Bob Uslander

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Euthanasia in the Netherlands is Helping People Who Want to Die, Dr. Rob Jonquière Ep. 13 49:09

πριν 6 years49:09

49:09

Dr. Rob Jonquière is the Executive Director of the International Federation for Right to Die Societies. He shares how euthanasia is helping people who want to die in the Netherlands. Now, assisted suicide is also legal. Hear how this is impacting the country. Contact World Federation of Right To Die Societies website San Diego Hemlock Society website Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: Welcome to another episode of Life and Death Conversation. I'm Dr. Bob Uslander, and I'm here today with a guest who I'm anxious to hear from. He's got a rich experience in caring for people at the end of life, and he's really on the forefront of the movement to assist people in having a more peaceful and dignified end of life worldwide. So, welcome Dr. Rob. Jonquière. Thank you for joining me today. Dr. Rob Jonquière: Good evening, yes. Dr. Bob: Yes. It is evening. For me, it's morning, for you it's evening. Dr. Rob Jonquiere: Sorry. Dr. Bob: Can you tell us where you're calling, where we're talking from? DrRob Jonquière: Amsterdam, in the Netherlands. It's evening here at this moment. Dr. Bob: Very nice, and you were just mentioning to me that you're in the midst of winter, but you're having some- Dr. Rob Jonquière: It's not a real winter, unfortunately. It's too hot. They are expecting a little bit colder next week, of course, in my youth, I used to go skating outside, and it is a long time since we have been able to do that, so probably the climate change, I'm afraid. Dr. Bob: Well, as you know, I'm in sunny San Diego right now, having grown up in the Midwest in Chicago, I had my fair share of snowy, cold winters, so I'm feeling fairly blessed knowing what's happening in the Midwest and the East Coast right now. Well, again, thanks for taking time. We met not long ago, a month or two ago, when you were here in San Diego at a conference, and I got to a chance to hear a bit about your background and what you're involved with, and I think we are kind of birds of a feather. We seem to share a belief system and philosophy about how people should be cared for and supported at the end of life. You live in a very progressive country, with respect to this, and you've been a pioneer for many years, so I'd love for you to share a bit about what you're doing and kind of give us a sense of how you came to be in this position. What was the path that brought you here? Dr. Rob Jonquière: Yeah. Well, actually, at this moment, I'm involved in the international movement as it is called, the Federation for Right to Die Societies, which is an international federation of 52 societies, like the Hemlock Society of San Diego is one of the members, and I am the executive director of that federation, which implies actually looking after the website of the federation and assisting the committee or the board of the Board of Directors of the federation, and I came there after I was retired. I had been retired from my work at the Dutch Right to Die Society, NVVE as the name is, and in my retirement, I'm not used to sitting still, doing nothing, and I'm very interested in the whole movement, not only in the Netherlands but also worldwide. When I was working at the NVVE, I was started work there about five days after the health minister brought her bill, an euthanasia bill in the Parliament, so I have been involved in all the debates actually right from the beginning in the parliamentary debates, and as Chief Executive Officer of the NVVE, I've been for eight, nine years involved in the practical situation after the bill was approved in the Parliament, and now we have our official euthanasia law since 2002, and having a law is not the end of ... Well, it is the end of a process, but it's the beginning of a new process, to get people to accustomed to the fact that we have a law where it is legal for a doctor to assist in euthanasia, and aid in dying as it is called today, and we have to see the patients get what they want and that the law is used as it should be. And, of course, it's interesting how I became to be the executive officer because my original profession is a family medicine, so I have been working as a family doctor in the eastern part of the country, and I know from the beginning, I always have been very interested in ... Well, let's say, not the patient with colds, or a little complaints or things like that, but especially the situations in which patients needed guidance, whatever they need guidance in, so I have been delivering babies on the one side of the life, and I also became involved in the end of life guidance, where automatically, in that period, first careful questions came from patients especially patients working in the healthcare field, about my position regarding euthanasia as it was known, but as it was illegal at that moment. And, of course, I had never got training on what euthanasia was, how you do it, or what kind of medication you use, so it's using your experience and trying to sort of help people die in a peaceful and dignified way, and of course having been given this kind of help, I have never reported it, because if I had reported it, I would have been persecuted and probably get before the courts, and I didn't want to do that- Dr. Bob: Of course not. Dr. Rob Jonquière: No, and my patients didn't want to have me in front of courts. They asked me to help. They said not if you're getting trouble, and of course, in the situations I'm talking about, it has been patients with terminal cancer situations, who actually were really at the end of their lives, suffering from their cancer situations, although we have been treating with all kinds of care and medication and help we could. Dr. Bob: So, I want to touch on that, I want to clarify a bit for anybody who would like that, this was occurring when you were a practicing family doctor. Dr. Rob Jonquière: Yes, the '70s, '80s. Dr. Bob: Okay, and you were doing the whole full spectrum of caring for people from birth to death, and you recognized that there were people who were suffering, and you obviously philosophically felt comfortable with providing that support, even though it was not legal. So, first of all, the statute of limitations, I'm assuming the statute of limitations, for that type of activity, is past so that you can speak freely about it- Dr. Rob Jonquière: Yes. Dr. Bob: About your experiences back then. Dr. Rob Jonquière: Well, I can, and I mean, even you can say that is kind of a Dutch culture. I mean, at that moment, I could not go to the authorities and say, listen, I've terminated a life of a patient because she was suffering terribly, so I just said, in my records, that she died because of her cancer, which was actually the case. I only speed up the dying process a little bit. Dr. Bob: Which is the same as the aid of dying laws here in the United States, where the patients are dying. Anyone who is eligible for physician aid in dying is dying. Dr. Rob Jonquière: Certainly. That is now, and of course, in the Netherlands, it is now absolutely normal practice in terminal cancer situations. People are in such a situation, and don't want to go to the real end of the suffering can ask for it, and will get euthanasia without any problem. Dr. Bob: Okay, so let's go back. So you ended your clinical practice. What drove you at that point to stop practicing in the way that you were in that practice? Dr. Rob Jonquière: Well, you know, the main reason is I have always been interested to not only do my work as a family doctor, but I always liked to work in organization, to support, to develop things, to do on education, or research, or whatever, so I did many things besides my practice, and actually that became a little bit too much for a work situation, and then I got the opportunity to become the head of the vocational training program for family doctors, which actually meant that I could go to work on a university. I had the opportunity to be involved in research, in education, in organization, and it was still inside the field of the job and the kind of work I liked, which is family medicine. So, not specifically my work in the field of end of life, just a change of work from being a, let's say a medical practitioner into a person on university working on a higher level. Dr. Bob: Got it, and through that period, were you still working in the end of life arena, helping patients at end of life? Dr. Rob Jonquière: Not intentionally. Not as a kind of idea. There were other things that I was focusing on. You can say that I developed, in that period, the vocational training scheme for nursing home physicians, which is a little bit that way, and whenever in the curriculum of the vocational training, the topic was end of life or palliative care, although they didn't give it that name at that moment, but end of life care, guiding dying people, yes, of course, I was interested in that because it touched a part of my practical work. Dr. Bob: Wonderful. And, then additional sort of responsibilities and opportunities, and then eventually found yourself really diving fully into the Right to Die organization, is that right? Dr. Rob Jonquière: That was also, actually, accidentally. I was looking for ... I don't know whether you know the issue of middle management. Working at a university, I was all the time in a middle management position, and I wanted to take one step further at being, having the end responsibility of something, and then I was invited, actually, to applicate for the job of the chief executive officer of the Dutch Right to Die Society, and of course, the main question they asked me, what is your opinion on end of life and euthanasia, because they were, at that moment, advocating. It's a large advocacy group for euthanasia in the Netherlands, and I could say, I'm in favor of it. I did practice the issue, and I thought it, indeed, should be legalized because I practiced when it was not legal, and I knew what difficult situation that was, doing something, which is very emotional but being allowed to officially talk about it. So that was is where I applicated for a job of the Dutch Right to Die Society, and from that moment I was indeed more than 100% into end of life, euthanasia, medical aid to dying, and all of the developments. Dr. Bob: And, you were there, you mentioned, that euthanasia has been legal since 2002. Dr. Rob Jonquière: Since 2002, yes. Dr. Bob: This was all happening right at the beginning of your tenure there. Dr. Rob Jonquière: Yeah. Dr. Bob: Well, fantastic. Can you describe for people who are listening what the different terms refer to? Dr. Rob Jonquière: The official translation of euthanasia is a good death, but in the Netherlands, we have since the middle '80s, the commission has looked into, and we have, in the Netherlands, defined euthanasia as the intentional termination of life on request of the person who is going to die. So it means that you do something, and the only aim of your action is that the patient is going die, and you only do that if the patient asks for it. So, if there is no request, you cannot practice euthanasia. You cannot practice euthanasia by giving medication, which, as a side effect, will terminate life of someone. Next, to euthanasia, which is an action by giving an injection, we have what we call assisted suicide. I know there is a lot of problems with the term suicide in the world, but we call it assisted suicide. There, as a doctor, you prescribe the medication, which causes death of the patient, but the patient takes the medication him or herself and legally- Dr. Bob: And, is that happening? Is that happening in the Netherlands as well, or has that pretty much gone by the wayside because of euthanasia being legal? Dr. Rob Jonquière: Well, the funny thing is that I've been speaking with my doctors of course, after the legalization, and all those doctors I spoke to said, well, I always want the patient to take the medication himself, so practice physician assisted suicide, still if we look at the figures in the Netherlands, we are lucky in the Netherlands that there is a very quality research and surveys going on what is happening, and there you see that between 85% and 90% or even more of the actions at the end of life is euthanasia, and only 5% is assisted suicide. So, officially, euthanasia is the main, so that's the reason why when we discuss the issue, we always talk only about euthanasia, but assisted suicide is the same, and you see that now some of the patients rather want to do it themselves. Some of the doctors, indeed, say if you want to die, you have to do something about it yourself, and I'm only prepared to give you the medication as you do in California. Dr. Bob: Okay. Is the medication being administered in the euthanasia cases, is that regulated? Is there a specific medication that everyone has access to? Dr. Rob Jonquière: Well, yes, it is officially one of an anesthesiologist, Pieter Admiraal, who you could call the inventor of the euthanasia medication, which is actually you bring the patient in a real deep coma, mostly by injecting barbiturates, an overdose of barbiturates, and after you have checked that patient really is in coma, and doesn't feel anything at all, you give again an overdose of a muscle relaxant, the medication anesthesiologist use when the patient is operated on. Dr. Bob: Okay. Dr. Rob Jonquière: Yeah, and that is now more or less a kind of protocol, and even if you look at our laws at this moment, it says, if you do it, you have to do it the proper way, which is you have to do it according to the medical standard, which is using that protocol, and the assisted suicide is just barbiturate, nine grams or 10 grams or so in a cloud of water. Dr. Bob: That's the same medication being used here, for the most part, the Seconal. Are there specific physicians who are trained in this, or what's that process like? How does a physician get certified or be allowed to do this? Dr. Rob Jonquière: Yeah, in the Netherlands and the Dutch law doesn't say that it has to be a certification. You have to be a doctor. That's the only thing you have to be. You have to follow the criteria of the law. The only certificate doctors are a group of second opinion doctors. Their obligation is, one of the criteria is that you have to consult a second independent doctor about case before you can perform the euthanasia, and these doctors are trained. Yes, of course, about the practicalities, about legal issues, but mainly about what kind of problems there are, and how to give a consultation to a colleague, if they are asked for it, but every doctor can actually practice euthanasia. Dr. Bob: Okay, like in California with the aid in dying, and the end of life option, it just requires a medical license, and the hope then is the physicians who are participating are becoming familiar, are becoming experts on their own. That's what we would hope. Dr. Rob Jonquière: I think that's what's happening. I mean, if you see in the Netherlands, we have of course what is it, 13, 14,000 family doctors, 85% of euthanasia is performed by family doctors, and you see of those family doctors, some 30%, 40% do it more regularly, which is still not more than two or three times a year in the average. So, they get used to how to do it, and there are manuals. We have papers or documents they can consult, and of course, that is where the second independent doctor can help. That doctor is trained. When that doctor comes, they can say, well, everything is okay, but, these and these things are not yet okay, and then the doctor can change that. We see more or less now, that sometimes, especially younger doctors don't go alone if they have to do it, but take an older colleague with them, so train themselves. Dr. Bob: Sure, we have mentors to help guide them. Is there opposition? Dr. Rob Jonquière: And, of course, that is also important of having a law. They are legally allowed to discuss their case. They can openly talk about, instead of having the fear that someone is listening and saying, hey, you have done something illegal and go to the police. Dr. Bob: Is there opposition in the Netherlands that is of significance? DrRob Jonquiere: There is. I don't think it is of significance. The main opposition is from the Orthodox-Protestant churches, and of course, we have the official opposition from the Catholic Church, the higher institutions. We see lower ... What do you call it? Clergy. Dr. Bob: Clergy, mm-hmm (affirmative). Dr. Rob Jonquière: Clergy working with family doctors, and then guiding their dying patients as well, but officially, the Church is against it, and practically we see 10% to 12% of doctors, mostly on religious situations, are not doing it principally, and then you have some 30%, 40% of doctors who are afraid, well, you know, don't know what to do, how to do, and don't want to go into that field. Dr. Bob: They just don't want to stretch themselves in that way. They don't feel comfortable for whatever reason. Dr. Rob Jonquière: Yeah. Dr. Bob: Well, that's fascinating. I that there's a lot of people around the world, and a lot of people in the United States that are clearly in favor of laws that are more favorable towards helping people having a peaceful end of life, you know, I hear so often when I'm taking care of people who are struggling with end of life challenges that we take better care of our animals than we do of our people here in this country, and of course, they are referring to the ease of which we can have animals euthanized but not allowing humans to have their suffering end that way. Dr. Rob Jonquière: What I have heard from one of my opponents once, as well, that's why there is a difference between a dog and a man, a human. Dr. Bob: Easy to throw that out, but just sort of deflect the conversation. So I appreciate ... I know that a lot of people will be very interested in just hearing more of the specifics of what is happening in the Netherlands. Dr. Rob Jonquière: Well, you know, the funny thing is, Bob, if you look at the attitudes in the population, yes, of course, maybe in the Netherlands it is a little bit higher than in other countries, but what I see in my function as executive officer of the World Federation now is that in practically all countries, even in what is seen as Catholic countries, you see a population of over 60% to 70% who are in favor of it. So, it is not the population which is a problem, it is the politician, and the politicians who many times have, of course, have broader responsibilities. You see in some countries, and I think in the United States certainly, you see more influence from the churches on politicians because they are dependent on that kind of situations, and that is the situation we don't know in the Netherlands, and in some other countries in Europe as well. Dr. Bob: The ability to influence politicians that way? Dr. Rob Jonquière: Yeah. Dr. Bob: With financial incentives and other types of influence. That is a problem ... and I know it is not unique to the United States, but it is especially problematic those influences, and in many cases, it comes down to fear and greed and how do you feel that the pharmaceutical industry or the insurance industry, the financial industry, how do you feel that they factor into this conversation? Dr. Rob Jonquière: As far as I know in the Netherlands, it's practically has no influence at all. That's of course because our system is based that if, as a doctor, you prescribe your medication, and the medication is known and accepted, it's being paid out of the insurance money, so what I hear from the States, where you pay, what is it, $3.5 thousand for a shot of Seconal, I don't know what it costs here, but maybe not more than 80, 90, or 100 euro which is paid by the insurance. So, there is no reason for patients not to have euthanasia because it is too expensive. Dr. Bob: Yeah, and that's in the Netherlands. I'm kind of trying to get the sense of the impact in the countries that don't have, you know, a national health service that covers the cost of care, and I'm sure there is some- Dr. Rob Jonquière: Then, it's what you see in the States, where actually, again, it is something which can only be done by patients who have the money for the medication. Dr. Bob: Well, can you give a sense of where you think things are heading worldwide? What's your prediction? Dr. Rob Jonquière: Well, I see the last years, there are changes going on. You see gradual changes, if you look at the United States, of course, you see more and more states getting over to laws, and unfortunately, there are impediments of financial reasons, but we see a change happening. I don't hope, actually, your new president will change something in the federal situation, because your Supreme Court is now more conservative, so if it comes to federal Supreme Court things, then you'll have some problems, but I see changing in the States, of course, changing Canada has an important push into America, I think. I see changes in Australia since Victoria has now a bill which will be in effect in 2019, I think, in June, and think that Victoria having passed a bill will mean the other states will also pass bills. They have been trying to do that, so there you see a gradual change and the only thing is I have no idea about Africa, which is, of course, a large continent, except South Africa, but that is practically not what I would call an African continental nation, but there is no movement at all in those countries as far as I know. And, in South America, we see Columbia having a law, and I know that countries like Ecuador or Chile who have even, in these kinds of laws, are more progressive than the Netherlands sometimes. So, I could imagine that maybe if they want that they would be able to change laws in this direction sooner. Dr. Bob: Well, it does seem like we're in general moving in that direction- Dr. Rob Jonquière: Yes, I think so. Dr. Bob: Many states have bills that are being discussed, and when you refer to Australia, I'm interested in that. I just read a book called Dying, which was a fascinating account of a woman dying of metastatic melanoma, who was living in Australia, and had actually obtained medication through an online source, but was very reluctant to utilize it or let anyone know she had it because without there being a law in Australia, anybody who had knowledge of this, or who supported her, would potentially be susceptible to being prosecuted for aiding in a suicide. The law in Victoria that you were referring to is that euthanasia or- Dr. Rob Jonquière: Yes, it is euthanasia. Dr. Bob: It is euthanasia. Dr. Rob Jonquière: And, the law is called Medical Aid In Dying, so euthanasia is a possibility, so where doctors actively apply medication and also assisted or giving medication which they take themselves, so they really have a law in the direction of euthanasia. The only thing there is, and that is what you see, is that because they wanted to take the wind out of the sails of the opposition, they brought in a huge number of criteria and safeguards. So, even I have seen somewhere they said this law is the most safeguarded law in the world. You have to comply, what is it, about 68 or 72 safeguards, so it is very complicated, and fortunately, what I see for example is that more and more, just because they are in their fight against opponents, people say you must be ill. It must be a terminal illness. We see in the Netherlands, many people are maybe not terminal because we have what's terminal, I mean, everybody is going to die, so in a way, we are all terminal. So, terminal illness is involved. There's expectation that you have to die within a certain amount of months, so it takes away the whole idea that it is, and that's what I think is important. It has to go about the suffering of the patient. Dr. Bob: And, that's similar to our law here in California. There is that requirement that there is a six months prognosis, which is sometimes difficult to ascertain. Dr. Rob Jonquière: You know, probably like me that the worst issue for the doctor is to say how long you're going to live. Dr. Bob: We're not good at it. Dr. Rob Jonquière: And, you also know patients who you say, you won't live a month, and they're still alive after 10 years, and the other way around. Dr. Bob: So, in the Netherlands, with the euthanasia law, there is not a requirement for the person to have a terminal illness, is that correct? Dr. Rob Jonquière: No. The requirement is that you ask for it, and you have welcomed the request, and you have a well-considered request, and the request must be voluntary. You must be suffering, and the suffering must be unbearable and hopeless, and I always say that is a major issue in our law, the unbearability of suffering is only the patient can say, this is for me unbearable, and the hopelessness is reason for the doctor to say, I cannot make your suffering bearable, so in that way, it is hopeless. And, if you together say, you're suffering is unbearable and hopeless, then you have fulfilled the criteria in that field, and then you have your second independent doctor. You must have no real alternatives et cetera, et cetera. Dr. Bob: And, that really just gives the ... it gives the responsibility back to the patient. It allows them to determine what is bearable or unbearable for them. Dr. Rob Jonquière: For that issue, of course, in the Netherlands, our population, our members of the Right to Die Society are not very happy about the law, because as they say, it is a doctor's law. The law protects doctors against prosecution if they comply with the request for euthanasia, and the patients say, okay, I have to ask for it. That's my responsibility. Okay, I have to tell the doctor it is unbearable, but I'm dependent of a doctor who says, yes, I will do it. And, many people, and certainly, I think that is a kind of why you can't call it progress in our culture, say, if I say have ... my life finished. I'm suffering too much. I want to end my life. I have the right to have my life ended. There the problem always is that if you want to end your life well, and dignified, and humanely, you have the possibility of having the right medication, or pharmaceuticals, and the only way to have the right one is to go to your doctor and ask a prescription. Dr. Bob: So, it's still not perfect, at least according to the eyes of the people, but it's- Dr. Rob Jonquière: It's not perfect if you look at autonomy, things like that, and that is the kind of development I see at this moment in the Netherlands going on, where organizations are trying to find out, and maybe you know Phillip Nitschke from Australia. They're trying to find stuff, well you can't call it medication, but organics, or bills, or substances which can end your life in a humane, quick way, which you get outside the help of a doctor. You can do it yourself. I don't know whether that's good. That's my personal ... I hesitate. Dr. Bob: That opens an entirely different can of worms, and that could be another conversation. Do you have a sense of how many people in the Netherlands make a request, but are not found to qualify according to the physicians who are they are requesting it of? Dr. Rob Jonquière: It is more or less, already for years, we see that about 10 to 12,000 requests every year, a third of them are refused for all sorts of reasons because the request is not well-considered because doctor sees there is no real suffering, or there are alternatives. A third is honored the requests, so between three and four and it's getting a little bit more thousand cases every year died by euthanasia, and then the other third, there the patient dies sometimes before the actually the whole process is started, because the nature of thing is, which we didn't speak about, I think one of the things when I talked to my patients, and I told them, if they really thought their suffering was unbearable, and I could do something more, and they asked, then, in the end, I would really help them. Then I saw, that actually they lived much longer in a rather good quality of life, and died in a natural way, just because they knew they were going be helped if it got really bad. Dr. Bob: Yeah, I had that experience where just the knowledge that the patients have this option available improves their quality of life from the moment I had that first conversation. Dr. Rob Jonquière: Yeah, that maybe is a major positive effect of having a law. Dr. Bob: Yeah. It's one of them, for sure. Do you know the statistics, I'm assuming that you do, but if you don't that's understandable, of what percentage of deaths that have occurred in the Netherland occur as a result of euthanasia? Dr. Rob Jonquière: The latest report ... you must know that every five years, we do a large survey asking doctors about their actions at the end of life, and we have such large and solid responses on it that you can extrapolate your whole population, so you see that the last time, it was a little more than 3%, and I think in the last year, when we had the report from the committees, it was practically 4% of all deaths cases in the Netherlands. Dr. Bob: Okay. Does that seem low to you? It seems a little low to me, for some reason. Dr. Rob Jonquière: Yes. Well, it is low, as many people think. Sometimes, if you don't know the numbers, they give you the idea that in the Netherlands, when you walk in the street, and you look a bit ill, you are killed by euthanasia. That is not happening at all, and I would say it is only 4%. We see a gradual increase in the numbers and in the percentage. I think it is too early yet to see whether that is going be a steady phase, or whether we're still growing, growing further, but certainly, it is not as many, especially opponents suggested, as soon as you legalize, you open the door to thousands of- Dr. Bob: The floodgates come in, and people are knocking down the doors looking to be euthanized. Dr. Rob Jonquière: But, of course, I realized when I was working with the Dutch Society that since we are a rather small country, so our total death cases are about 140,000 every year if you talk about 4 percent, you talk about 6,000 euthanasia cases every year. If you live in a country like the States, where you have millions more, probably a higher death number, and then you talk about only 4%, you're talking about a large, larger numbers which are, if you look at what papers or communications say about it, it is, of course, more impressive than when we started to talk. We had 2,000 cases every year, which you can say, oh it's only 2,000. Dr. Bob: Well, this has been really educational, and I think fascinating, and I know many of the listeners will appreciate what you shared, now you're speaking around the world. You go to the Federation meetings, and is their information or issues that you feel would be important to bring out that I didn't have a chance to ask about? Is there anything that you think that you hear questions over and over again that you feel would be valuable? Dr. Rob Jonquière: Oh, I think what we addressed today is more or less what is generally felt. It's of course important that if you talk, if you're interested in the issue that you should orient yourself on the right arguments and don't listen too much to the opponents, because many times, I see opponents misusing ... for example, the numbers we produce in the Netherlands, just to give you a small example, we had in '85 or '90, the first large survey and it appeared at that moment that a thousand times every year, a doctor terminates the life of a patient without having a request from the patient. Of course, everybody said that is wrong. I mean, you only do it if there's a request. If you don't do it on request, you're actually committing a murder. We see that number getting down to the last time, I think it was about 100 cases every year, and even there, we know those 100 cases were no murders but were specific situations, for example, very small children who were suffering enormously where doctors terminated life or terminated suffering actually, and officially, performing euthanasia without request, because a small child cannot ask it, so it is a very small number, and even that small number can be explained from humane actions by doctors, and still our opponents tell that in the Netherlands, they kill a thousand patients without request, and that kind of messages, I see everywhere in the world getting around, and getting first at patients or people who are interested in the issue. So, one of the things I mostly do when I speak around the world is explaining our situation in the Netherlands, and say, it is different from what you hear from the papers because they use those wrong figures. Dr. Bob: Well, that's really helpful, and I think it is important to caution people to be careful about the information that you are letting and- Dr. Rob Jonquière: Especially nowadays, don't take in fake news. Dr. Bob: Yeah. And if people want to get more information or learn more about you and the Federation, the website is www.worldrtd.net . Right? Dr. Rob Jonquière: Yes. That's right, and there you can get every information. You can get general information of what's happening around the world, and of course, you can find the addresses of the 52 national societies with emails and with website addresses, so from there on, you can click wherever you want to go.…

A Life & Death Conversation with Dr. Bob Uslander

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How to Stop Fearing Death and Start Living Today, Cathy Spatuzzi, Ep. 17 25:52

πριν 6 years25:52

25:52

Cathy Spatuzzi is a yoga and fitness instructor who works with Integrated MD Care. She shares how she helps patients and her views on why she doesn't fear death and, instead, makes sure she is living in every moment. Books on End of Life Being Mortal, Atul Gawande Knocking on Heaven's Door, Katy Butler Find more in this blog post, here. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: Hello and welcome to A Life and Death Conversation. I'm here today with a good friend and a really valued member of my Integrated MD Care team Cathy Spatuzzi. I'm very excited to introduce you to Cathy and to hear some of her insights. Cathy and I have known each other for a bit, and we've shared some incredible experiences with our patients. We're going to touch on some of those, let you know what Cathy does and how she does it because I think she's really quite an expert in her field and I know that she loves what she does. So, Cathy, thank you for being here and joining us. Cathy Spatuzzi: Hello, Dr. Bob. Thank you for having me. Dr. Bob: Yeah, my pleasure. It's great to see you. I'll share that trying something new, our podcasts, the ones that I've done previously have all been recorded on the phone. Today Cathy is in the office, and we're doing it together. It's really nice to be able to look at her in the eyes as we do this. Cathy Spatuzzi: Yeah, I agree, face-to-face is very nice. Dr. Bob: Yeah. So Cathy is … her title is yoga and fitness instructor. I know that there's probably a lot of yoga and fitness instructors out there who work in various capacities but that doesn't really begin to explain quite what Cathy does because I've seen her in action and I've seen the results of her work. It's nothing short of magical; I have to say. Cathy goes in and works with some of our sickest and most frail patients. She works with people who have dementia. She works with people of all ages and abilities. They don't even know they're exercising. They actually just think they're playing games and meeting a really cool, fun, person. So Cathy, can you just share a little bit about how that happens, what you do, how you approach your patients and just share a little bit about how that magic happens? Cathy Spatuzzi: Sure. So I got my yoga instructor certificate, and I started teaching seniors. I took an extra class in teaching seniors, and I really loved it. Then I met Dr. Bob, and I've always been a physical exercising person myself, and so I've made up my own little program where I go into a person's home, and we have a whole hour of exercise. So we do physical weights, and whatever that person needs at the time, that's how I meet their needs. So we do dancing, we do marching. I bring some music sometimes. I have little balls that we do exercise with. They're bright and colorful. We play games with the balls. I also have just blown up regular balloons, and we hit the balloon back and forth and play a game that way. A lot of people that used to do tennis or volleyball, they remember that, and their muscles and cells remember that and they really get a lot of fun exercise just hitting the balloon back and forth. They tell me lovely stories. Most of my people are 80 to 90, some are a 100 years old, and they tell me fabulous stories. They all have a very positive attitude in life. Dr. Bob: I've met with people, I've been there after you've been with them and it really is pretty dramatic. A lot of our patients, because a lot of times they don't feel well, they don't have a lot of energy, they're dealing with pain, they're dealing with other challenges, and exercise is not something that they necessarily prioritize or look forward to, but that's not the case with you. They obviously don't feel like they're doing exercise. They don't feel like they're working. There's something else. There's another piece that obviously you're bringing to it, which, to me, it feels like you're just really connecting with them very deeply and appreciating them as human beings, and the exercise just happens as on the side. Cathy Spatuzzi: Yes, I agree. I don't think of it as exercise myself. I go in, and I have fun, yes, and I connect with that person one-on-one, find out what they like, what else do they like, then I bring that in with them. Dr. Bob: We've shared a couple of patients that had had some pretty remarkable experiences, people who were not expected to live more than a month or two who through combined efforts have gone on to live for a couple years, people who were not walking who are now walking half a mile to a mile without difficulty. Can you share maybe a little bit about what that's like for you to be part of that? Cathy Spatuzzi: It's a gift. I love all my clients, but to work one-on-one and to see a person that was maybe almost on their deathbed to come back and is living and they want to have a life. One of my sayings is motion lotion. If you don't move your body, you're going to get stiff, and you're not going to feel like moving so let's just keep moving. Some of my other seniors that are more fit, that's what they say, you have to keep moving, you have to keep moving, you have to keep moving. So I keep them moving. Dr. Bob: You keep on moving, and you keep it fun. Cathy Spatuzzi: Yeah. Well, you have to have fun in life, so why not bring it to your work? Dr. Bob: Yup, I agree 100%. So this is A Life and Death Conversation, and part of what we're trying to do is give people just a look into how we can have an easier time talking about topics that can be difficult: death, illness, debility. So as an example, we are doing that there. We're talking about things that might not come up in normal conversation. I, as you know, go right to the point. I don't mince words. I don't hold back a whole lot. I just want to ask you and get some of your personal perspectives on some of these things, if that's okay. Cathy Spatuzzi: Sure. Dr. Bob: All right. Tell me, do you have … and this is a question I ask all my guests. Are you afraid of dying? Cathy Spatuzzi: No, I'm not afraid of dying. Dr. Bob: You're not afraid of dying. Cathy Spatuzzi: No. Dr. Bob: Well, why? Can you share why you're not afraid of dying? Cathy Spatuzzi: My maternal grandmother always talked to me about death. Dr. Bob: Really? Cathy Spatuzzi: It wasn't morbid. It wasn't like, "Oh, I …" I don't know, she just always talked about it. It wasn't something under the covers. Dr. Bob: Just kept in awareness of it in the home? Cathy Spatuzzi: Yeah, like when somebody died, we'd talk about it, or when- Dr. Bob: Okay, how healthy. Cathy Spatuzzi: Yes, uh-huh (affirmative), and so I think I've just adopted her attitude and calmness about it. For me, thinking about dying, I think about living. So I'm alive. I can walk and talk, and do all these beautiful things, but let's be present doing it. If you're just walking through life in a fog, then you're not living, but when you think about you're going to die, maybe that's a point where you're going to wake up and start being present in your life. Dr. Bob: Do you feel like thinking about dying, talking about dying is responsible for you having a greater awareness of and maybe gratitude for life? Cathy Spatuzzi: Yes. I think I have gratitude every night before I go to bed. Dr. Bob: I guess, not being dead is a part of that, right? Cathy Spatuzzi: Right. Driving around and you see the beautiful clouds. You might see an airplane. Let's take each moment for today because maybe you will die tomorrow. Let's be grateful for what we have today, not think about what if, what if, what if it's going to happen. I pray that I have a beautiful day and then I have a beautiful meal and then I go to sleep and die. Not tomorrow. Dr. Bob: Not tonight, yeah. Cathy Spatuzzi: Not tomorrow. I got- Dr. Bob: Because I know you have some things to do this weekend. I know you have some plans. Cathy Spatuzzi: I know, yeah. I have plenty more years ahead of me, but that's what I've always thought about, nice and peaceful. Dr. Bob: Beautiful. Interesting. We both are spending time now with people who believe that they may not have a lot of time left, some of them because they're elderly and some of them because they have a terminal illness, and in some of those conversations, I hear people talking about how their time is so limited. Occasionally, they get into this pattern of feeling bad about it, and I wouldn't say necessarily feeling sorry for themselves, but focusing on how their life is going to be shortened and they're aware of that. I always accept that. I never try to convince them to think differently. That's their thought, and I would never judge that, but what I'm aware of is that there's no guarantee for any of us. I may have a patient who has a prognosis, a life expectancy of three or four weeks. There's a lot of people who are going to die unexpectedly before that person dies. We may be one of them. We have no guarantees, and so focusing on what we have today like you're talking about like you're suggesting being grateful for the fact that we are alive and that most of what's going on in our life is good, may not be perfect. Jon Kabat-Zinn, the creator of the mindfulness-based stress reduction program, had a phrase that I love and I repeated often. It's, "As long as you're breathing, there's more right with you than wrong with you." Cathy Spatuzzi: Yes, I agree. Dr. Bob: Yeah. Cathy Spatuzzi: That's beautiful. Dr. Bob: Sometimes if somebody is lamenting about the pain that they're having, the limitations that they're having, just remembering how many trillions of things are happening simultaneously in our body, the chemical process, the cellular division, the fact that everything is working as it's designed to, except for a few things, which could be significant things, it's still a magical design. Cathy Spatuzzi: Yeah, the body is an amazing piece of work. Dr. Bob: Yeah, and you're doing a great job of keeping it amazing. Cathy Spatuzzi: Thank you. Dr. Bob: Yeah. Cathy Spatuzzi: I love working with the clients, yeah. Dr. Bob: Yeah. Some of our clients die, right? Cathy Spatuzzi: Yes, they do. Dr. Bob: Yeah, they do. How do you deal with that? Cathy Spatuzzi: It's difficult at first. Dr. Bob: Because you spend more time with them even than I do. You're with them sometimes two or three times a week and getting very close, getting very connected with them. Cathy Spatuzzi: Yes. When they die, going into this though, I mean that's part of life, and I knew that but when they die, I go into myself and remember all the good times that we had together, but then that also brings up for me my own experience with my own family and dying. So then it's almost like I grieve all of them: my parents, my grandparents, a friend all over again, which isn't a bad thing. Yes, it's sad and, yes, I cry, but there's another layer of deepening, of healing, of comfort for me. Dr. Bob: So when a patient dies, when somebody who you've been working with a client, it sounds like you're allowing that experience to create another layer of connection with other people who have gone before them, with your family. It allows you to grieve all of death, all of the people who have gone. Cathy Spatuzzi: Yes, I grieve all of the people that have died that I know and then I think about where did they go … all the same, questions come up for me. Where did they go? Where does the spirit go? Where does the soul go? Where does the brain …? I've read a lot of books, and I still don't have any answers. Dr. Bob: Oh, darn it. I was hoping that you were going to give me the answer now. Cathy Spatuzzi: No, I don't have any answers, and that's okay. I'm comfortable with that. Dr. Bob: So you don't know but what do you think? Where do you think … what's your thought about what happens after we die? Cathy Spatuzzi: Well, I believe that the physical body dies. I would like to believe that there is an after realm, rather you call it heaven or reincarnation. Those are the things I don't know, but it would be nice to see some people again that have gone before me. Dr. Bob: So you're not positive. Cathy Spatuzzi: No, I'm not positive. Dr. Bob: What percentage of certainty are you that there's something else? Cathy Spatuzzi: 50/50. Dr. Bob: 50/50. Cathy Spatuzzi: Yeah, and I'm comfortable with that. It's because I've thought about it so much. Dr. Bob: Well, if there is … Oh, that's nice. You're like right on the 50-yard line there. So if there is something else, then that's great, and we'll be hopefully very pleased to find out, and if there isn't, well then we will never know, right? Cathy Spatuzzi: Right. I've asked some of my relatives that were dying. I said, "Now, when you get wherever you're going, wherever that is, give me a sign." Dr. Bob: And? Cathy Spatuzzi: I haven't gotten anything. Dr. Bob: You haven't gotten anything. I have. I think I've shared that, my dragonfly connection. Cathy Spatuzzi: I did have a feeling, but not necessarily like a physical sign, like a picture or something, but I've had feelings of my grandmother touching my hand. I knew it was her. Dr. Bob: Yeah. Cathy Spatuzzi: I knew it was her. Dr. Bob: Okay. So then- Cathy Spatuzzi: So maybe yeah. Dr. Bob: Yeah, I'll go with that. Cathy Spatuzzi: Yeah, yeah, yeah. Yeah. Dr. Bob: Cool. It's interesting because there are … I hear that people are very uncomfortable talking about death. I hear that all the time. People don't want to talk about it. They want to ignore it, pretend it's never going to happen. I don't have that experience with people, and maybe it's just because I draw it out. But in the conversations that I or maybe people who … Maybe those people like walk away when they see me coming; I don't know. But I actually find that people want to talk about it and given the opportunity, they're drawn to the conversation. It's interesting because I find some people want to talk about a bad experience and maybe it's because I'm a physician and I make it safe, but they want to share how traumatic this was and complain … not complain, but just put it out there and it seems like it's little cathartic when they talk about how difficult an experience was. Then there's another group of people who were really transformed by a beautiful experience around death and dying of a friend or a loved one, and they also want … it's cathartic for those people as well. I find it really fascinating how much people want to have this conversation when it's brought up in a way that's safe, and someone clearly wants to hear what they have to say, what their thoughts are. Cathy Spatuzzi: I have found that some people just need somebody else to listen. They haven't found that person, and maybe that's you. Dr. Bob: Yeah, maybe, maybe. I'll tell you that sometimes my wife, Sandy, it gets a little overwhelming for her because she's with me and we'll be either at dinner, we'll be at a party, and I start talking to somebody and she goes away and comes back, and we're deep into this conversation about how their mother passed away or the complexities of certain situations. I just find that that's sort of a natural thing that's happening. Cathy Spatuzzi: You have a gift. Dr. Bob: I don't know it's a gift, but it's an interesting phenomenon, so. Cathy Spatuzzi: Yeah. Dr. Bob: Do you have any experiences that were either challenging or really beautiful that you want to share? Cathy Spatuzzi: My maternal grandmother, Jenny, she was 80 years old. She fell and broke her hip. I was her guardian because my mother had already passed away years ago, which is a whole another story. But I was in the nursing home room right beside my grandmother, and she was dying. I could see her coming in and out of what I call crossing the veil. She wasn't exactly sleeping, but she was testing the veil and then coming back. She'd come back, and she'd say, "Oh, Cathy, you're here," and then we would talk and I was able to tell her how grateful I was for all the time that I got to spend with her closely after my mother died. She said, "Oh, I want to die," and I said, "Okay, I don't want you to suffer. It's okay." She said, "But I don't want to leave you." I said, "Grandma, it's okay. I'm going to be fine." Then the next day she died. So, and I've heard this similar kind of story from several other people and the person that's dying just needs permission. Dr. Bob: But you weren't there when she actually died? Cathy Spatuzzi: No, I wasn't in the room when she died. I was there the day before. Sometimes they don't want to die with you in the room. Dr. Bob: Yup, that happens frequently. Cathy Spatuzzi: Yes, yes. Dr. Bob: Which is hard, which is a challenge because you don't want to leave. A lot of times people don't want to leave. They feel like they're supposed to be there through the very end, to the last breath, and it's hard to know what's happening. So there are times when someone does step away, they go to the bathroom, they run out to get something for somebody, and they slip away, and that's the way it's meant to be. Cathy Spatuzzi: Yes, I agree. Dr. Bob: Yeah. When you describe … what was the word you used? Cathy Spatuzzi: Crossing the veil or testing, testing the veil. Dr. Bob: Crossing the veil. Testing the veil. Can you share a bit more about that? What made you believe that she was testing the veil and not just like napping or falling asleep briefly? Cathy Spatuzzi: I can't describe it any other way, but I could feel her body, her spirit, not really her physical body, but her spirit, her soul, and I didn't … I could see something but it's kind of this feel-see type of a thing, and I knew she wasn't exactly sleeping because I could feel it going out, this energy, and then coming back in. When she would come back in, you would see her body be more alert and then she'd open her eyes and then we'd talk a little bit and then … I could tell if she was sleeping versus doing this testing. Dr. Bob: Fascinating. Cathy Spatuzzi: Yeah. Dr. Bob: Yeah. Cathy Spatuzzi: It was great. Dr. Bob: That's great, yeah. I hear about, read about and I've seen people who I believe are in that place. Testing the veil, I haven't heard that description, but I like it. I truly believe that as people get closer to death, they're in two worlds, right? Cathy Spatuzzi: Yes. Dr. Bob: They cross. They slip back and forth. So if we really believe that, then it certainly gives us a little bit more comfort and assurance that there is something on the other side because that's what they're testing, that's what they're exploring. I've seen people in the last moments or hours of life reaching out, talking about people who they see, loved ones, and I know that a lot of people would write that off as hallucinations, as due to medications. They're not really there. But I completely believe that they are making a connection with the spirit world and those who they are going to be reunited with on the other side. I can't prove it. I know that there are books written about it, a number of good books, and we can put some of those resources on the website to share, but I implore people, I welcome you to read some of these things because it really does provide quite a bit of comfort. If you're uncertain or you're worried about everything just ending or what might happen after death, reading about the experiences of people who fully believe that they were on the other side and came back to be able to tell about it can be very reassuring. Cathy Spatuzzi: Even the people that have been in terrible car accidents and then they've been rushed into the surgical room, and they have a story that they're up on the ceiling watching their body being operated on and then after that, they come back in, and they come and tell their story. Dr. Bob: Yeah. Cathy Spatuzzi: So, yes, it seems like a very pleasant place. Dr. Bob: Yeah. Cathy Spatuzzi: Yeah, but I guess- Dr. Bob: No, I don't think I have ever heard anybody come back and say, "Wow, that was really bad. I mean that was like fire and brimstone, and I don't want to go there." Of course, as a physician, I'm supposed to be very scientifically minded. I know there's a lot of cynics, a lot of skeptics, and everyone is welcome to their own beliefs and opinions. I choose to believe that there is something beautiful waiting for us and you have the ability; we have the ability to access it on this side. I do believe that the walls become more permeable, the closer we get to death. I feel that comforts me and apparently, you've had experiences where you feel the same. Cathy Spatuzzi: Yes. Yes. Dr. Bob: Yeah. So I just want to ask one last question before we wrap it up. What's most important to you in life? Because this is life and death. We talked about death. We've also talked about the way that you enhance people's lives, which is incredible. But for you personally, what is the most important thing for you in life that makes life really beautiful for you? Cathy Spatuzzi: Being present as best I can in the moment and being kind to myself and being kind to others. Dr. Bob: That's a good way to be, and you are doing that incredibly well. Cathy Spatuzzi: Thank you, Dr. Bob. It's a pleasure. Dr. Bob: Yeah. Thank you for being with us. I look forward to having you back on another time if you're willing? Cathy Spatuzzi: Sure, yeah. Thanks for inviting me. Dr. Bob: All right, you have a good day. Thanks, everybody for tuning in. Cathy Spatuzzi: Bye. Dr. Bob: Bye-bye.…

A Life & Death Conversation with Dr. Bob Uslander

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How Music Is Helping Alzheimer's Patients – Alive Inside, Michael Rossato-Bennett 39:55

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Alive Inside" is a wonderful film and movement that awakens the Alzheimer's mind and connects generations, comforting elders and rescuing youth. The film's Director, Michael Rossato-Bennett, shares how it all began. IntegratedMDCare.com " Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Alive Inside website Alive Inside Facebook Page Transcript Dr. Bob: Today's guest is Michael Rossato-Bennett-Bennett, the director of the film, Alive Inside, and the founder and executive director of the Alive Inside Foundation. Alive Inside is a phenomenal film, and I highly recommend you find a way to watch it. The Alive Inside Foundation is dedicated to healing loneliness and disconnection in all of our lives, but especially in the lives of the very young and the very old who are living with dementia. They partner with communities to connect the generations and shift our relationship with life, aging and growing up. The Foundation seeks to end loneliness using empathy, music, life story, and film. This interview with Michael is an intimate exploration into the mind and heart of a man who seems to have stumbled upon his purpose and has been inspired to create in a much more expansive way since doing so. I hope you enjoy it. So, Michael, your life has changed pretty significantly in the last several years. From what I can gather, what started as a project that you couldn't really foresee a whole lot coming out of, to what has been created in your life now and looks amazing. What's it like? Tell me the journey a little bit. Michael Rossato-Bennett: Well, like every life, probably the most important things are your failures. Those are what you learn from, like your woundings, your emptiness, your hungers. These are the things that actually fuel you. When nothing else makes sense, I'm deeply interested in what makes sense when nothing else makes sense, and I think that's a very apt conversation to have in this time because I'm sure I'm not alone. I think if everyone were honest, they would just say right now, "What the heck is going on?" Dr. Bob: How did we get here? Michael Rossato-Bennett: How did we get here? How do we tell our children your president doesn't tell the truth all the time? How do we say your government isn't really trying to protect you? We're confused. I mean I am, and I have been many times in my life. I'm going to get a little philosophical here, but I think anyone living in a predatory culture that doesn't quite know that they're living in a predatory culture, has a feeling of disquiet and confusion, and like all of us who are trying to do something in the world, our efforts are constantly called into question. What am I doing? Am I helping create a just world? Am I helping create a world where life is recognizing and aiding life, or am I deeply investing in a system that is reducing the quality of life, literally for the planet at this time? I think every one of our occupations, from farmer to doctor, has to wrestle with these questions right now, what is my place in this world that we've created, and, unfortunately, we don't get to remove ourselves from it I don't think. Dr. Bob: It's interesting. As you're talking about this, and I don't know if you have children or not, but as you're talking about this, I'm flashing on my 11-year-old son, who is right at the verge ... If I asked him what does it feel like to live in a predatory world, I think he would know enough about what I'm asking to form an opinion and connect with it. But I, also, feel like he's still living in this other world where he can slip back into this sense of comfort and not allow that to influence his day to day existence. Michael Rossato-Bennett: I mean this is at the core of everything I'm working on, and it's simply the recognition of the idea that we actually do mature, that there is actually an arc to our lives. When I was 21, I was competing my ass off to win the steak knives at my job for Cool Vent Aluminum telephone salesmen. I wanted to be the best Cool Vent Aluminum salesman because the sales manager told me that I was nothing if I couldn't book these appointments for his salesmen to sell this poor, older people aluminum siding and new windows. Dr. Bob: And you believed that? You believed that story. Michael Rossato-Bennett: I believed it. Dr. Bob: Yeah, you did. Michael Rossato-Bennett: I believed it, and really, honestly at that point, all I wanted to do was be good, be recognized, to succeed, to have some validation, and honestly, I didn't think that the people who were in authority, that the people who were older than I was, I didn't think that they didn't know what they were doing. I thought they knew what they were doing. But your 11-year-old son, he's awakening in a world where it's obvious that we don't know what's going on, that something is happening, and it's amazing what's happening. I mean basically what's happening is we're going through a major psychic, intellectual, spiritual, existential definition of what it means to be human, and what it means to be human together, and ideas that we've had for thousands of years are no longer functional in the face of these incredible tools that we've created in the last 20 or 30 years. The computer has just turned human culture on its head, and we are not ready for it. Dr. Bob: Right. Michael Rossato-Bennett: And we're innocents, and I think in a hundred years we'll look back and this and go ... Just like slavery. At one point, slavery seemed to be a pretty good business model. We try not to do that anymore, at least in a recognizable form. But in a non-recognizable form, we haven't given up that business model, and that's what we're dealing with. I mean you're a doctor, and I work in healthcare to some degree as well, and Marshall McLuhan is a great media thinker, a thinker about media, and he said years and ... Maybe 60 years ago or 50 years ago, he said, "The medium is the message," and I never understood what that meant, but I understand what that means now, that basically, the structures that we create determine the outcomes, no matter who is in them, or no matter what the outcomes are. When you have a lot of people making money on petroleum, you get plastic in the ocean. It doesn't matter what people do. In 50 years, we won't be relying on petroleum. We won't have the pressure to create as much plastic, and maybe we can solve that problem. Dr. Bob: Well, so fascinating. Great perspective. Love it. Not exactly where I was anticipating the conversation was going to go, but I love it, and I want to hear ... So you take that. I'm sure that your awareness is continuing to mature, to evolve, and it's influenced by and influencing what you are doing day to day to improve the lives of the human beings that you're concerned about, as we both are. What's happening in your life? I want to know what you're doing. What's the Foundation doing? How are you right now serving in a way that is trying to achieve the most benefit for humankind? Michael Rossato-Bennett: Well, I mean that's a big thing to say. Dr. Bob: I know. Because it's happening. What you're doing is serving humankind in a positive way. Michael Rossato-Bennett: Right, right. I'm not young. I'm not a child anymore, and you get to a certain point in your life, and you ask yourself, "Okay. What can I do to help other people," because helping yourself is kind of boring after a while. It just becomes boring. So you want to expand your relationships with other people, and it's interesting. Dr. Bob: I lost you for a second there. You said interesting, and then I lost you. Michael Rossato-Bennett: I was relating to these thoughts. Okay. Sorry. All of my thinking comes out of working with these elders with dementia and meeting them. You're right when you say my life has transformed. I mean I walked into my first nursing home, and I wanted to run because I'd had really some very traumatic experiences in hospitals when I was a child. They put that ether on my face. I don't think they do that anymore, and I struggled and screamed, and yelled, and fought. They finally just gave me shots in my butt. But that smell of health care, of the hospital, I swore I would never, ever step inside a hospital or a healthcare facility, place forever. I promised myself I would never, ever do that. Then here I am. I had been hired to make a website for a guy who was bringing iPods into nursing homes, and he thought that it would be a good, new thing to do, and so I did it. There I was sitting in front of a man, Henry. He was the first one that I really saw the power of music to wake the hidden vitality of a mind, a mind that had lost its capacity to connect with itself and with others. I didn't want to be there. It was very sad for me to see this human being, this shell, if you will, of a human being, who didn't seem to be able to come out of that shell. Then we gave him ... Millions of people have seen this clip. Actually, over 100 million people have seen this clip. Dr. Bob: Really. That's where it's at, at this point. Incredible. Michael Rossato-Bennett: Well, it was actually one of the earlier clips to go viral on Facebook. So it was still back when Facebook was becoming before they put all these clamps and started monetizing everyone's life. It was back when they were giving it away so that people would join, and so it's a completely different animal now, and that's what we're discovering right now, and a very dangerous animal as well. But anyway, so here's Henry, and we give him some Cab Calloway, and I get to experience a human being awakening. This guy, he starts moving, and his eyes light up, and he starts singing. He starts making poetry. When I took the music away, I thought he would turn off like a ragdoll. Dr. Bob: Like a light switch going off. Michael Rossato-Bennett: Yeah. Like the electricity was going off. But, no, there was this residual aliveness and connection, and he talked to me, and he was so beautiful. The whole world saw this. I mean I went to bed that night and my son ... That I posted it. No, I didn't post it. I put it on my friend, Dan Cohen's website, and some kid found it and started spreading it in the Reddit community. I don't know if you know what Reddit is. Dr. Bob: I'm a little bit familiar with it, yeah. Michael Rossato-Bennett: It's a community of young people on the internet, and my son is in that community, and he saw ... He came into my room. He said, "Dad, they're talking about your film on Reddit," and I was like, "Really," and he goes, "Yeah. It's gone from 300 views to 400 views," and I was like, "Oh, my God. That's amazing." Oh, my God, and then we went to bed. We woke up the next morning, and it was at 180,000 views. On the next day, like a million views. It just kept going. But the amazing thing was, for me, I mean I thought we'd discovered the cure for Alzheimer's Disease. I was like, oh, all you got to do is give them music, and it makes their Alzheimer's go away. Then there's, of course, a sad realization that, no, you're just waking up some very deep pathways that are actually spared. They're pathways that are very deep in this elemental brain. Not in the forebrain, which is really the core of I think what I'm working with right now, and that is that when you don't know where to go, sometimes the deepest parts of ourselves hold profound and unexplored wisdom, and I constantly go to those deepest places, like music. Music, by now, it's part of our DNA. It's literally been adapted to our DNA. I mean a child, an infant, a human infant will respond to a beat and other primates won't in the same way. Yes. Dr. Bob: I watched the film a couple times, Alive Inside. I've watched it a couple times. I just watched it again last night. I was, again, just blown away by the little toddler who was conducting. Michael Rossato-Bennett: Oh, my God. Dr. Bob: The natural instinct in him, and he's a little performer. But I agree, you can see it in almost every child from the time that they're able to interact with the world, that they respond to music, and they've been responding to it since they were in utero. Michael Rossato-Bennett: Yeah. Dr. Bob: And that never goes away, unless you lose your hearing. Michael Rossato-Bennett: Which is another enormous problem. About half of the people who staff thinks have dementia, they probably have a little bit, but more, they have hearing problems. It's an enormous problem in elder care. So what are we doing now? At first, I was like, "Oh, my God, let's get everybody who has dementia their music, and let's make that happen." In some ways, that's happening. Michael Rossato-Bennett: It's hard to realize what we don't know, right, or what we didn't know. When I was making Alive Inside, we had so much trouble getting people to try this, to give these elders their music, and it was really a struggle because it was a new idea. But then the hundredth monkey syndrome kicked in a couple of years ago, and now this idea has literally spread like wildfire across the world, and to such a degree that I think ... I was joking with a friend way back then. I said what's going to happen is some day I'm going to say I made this movie about how you can play music for people that's their music, that gives them an emotional reaction, and if they have Alzheimer's it will awaken parts of their brain that have been forgotten, and I said in five years, I have this feeling that people will go why did you make a movie about that? Everyone knows that. Dr. Bob: Yeah. Right, what's so different. Michael Rossato-Bennett: Everybody knows that. We know that, and that's where we are. Everyone in the world knows this now. I mean I had some part to play with it, but it's that hundredth monkey thing. When something is important, and you have a disease like Alzheimer's where there is no cure, and if you have something that can help, it's going to spread like wildfire, and I think that's what's happened. Dr. Bob: Well, of course, it's very helpful for people who have Alzheimer's to try to awaken that and to bring them a sense of joy and connection, but it's, also, incredibly beneficial for people without Alzheimer's, who are just lonely, right? They're just the people throughout the nation, the world, who are isolated or limited in their own homes, or in assisted living communities, or in nursing homes. The ability to give somebody, to connect them with the music that has been meaningful for them at various points of their life, brings joy, brings comfort, brings connection. There's no way to understate the impact. So understanding that I'm curious ... I'm in San Diego. I have a concierge practice, and I take care of people who are in their homes who are dealing with end-of-life issues. They have dementia. They have cancer. They have heart disease. It's a small practice. It's like a concierge practice for people with complex illnesses and who are approaching the end of their life. As part of that, we have integrated therapies, and I have a couple of music therapists who go out. They're angels. They connect with the patients, and we see them flower. We see them blossom. Some of our patients, with these therapies, music, massage, acupuncture, reiki, they go from being bedbound, and miserable, and wanting to die, to get re-engaged with life and getting- Michael Rossato-Bennett: And it makes sense. Dr. Bob: And it makes sense, total, and I go into nursing homes, and I'll see people there, and we just created a foundation. We just got the 501c3 determination from the IRS, so we're ready to make this thing happen. How do we take advantage of what you have created to implement and leverage that in San Diego? Let's talk about how this is actually happening on the ground. Michael Rossato-Bennett: Okay. Well, first of all, you've opened up some really big cans of worms here. Dr. Bob: I have a knack for doing that. Michael Rossato-Bennett: Most of the people who have dementia and Alzheimer's, they are not in institutions. They live at home, and we have a culture that defines people as valuable to the degree that they're productive, and it's deeply ingrained in us. It's ingrained in our religion, and our morality, and our laws, even to the point where we've created lots of meaningless work, just because people want to be working, and the dark side of that, not the meaningless work, but this idea that we have no value unless we're productive, is the elders that you're finding. What is their productivity when they're just sitting? They can see their death, and they probably feel they're not contributing. As a matter of fact, they might even feel that they're a burden, which is a horrible thing for a human being to feel. One of the things that I've been so intrigued about, about people with Alzheimer's, is they forget so much, but it's strange what they don't forget. They don't forget what they used to be. They don't forget that they're having trouble communicating, and they used to be able to communicate, or at least it seems like that to me. You opened up another can of worms, which is loneliness. The UK just appointed a minister of loneliness. 40% of Americans report problems with feeling lonely. We're discovering the dark side of social media, which is this capacity that it has to make people judge themselves, their real life against the sort of phony life that's presented one snapshot at a time and edited and Photoshopped. People feel this kind of not being good enough, and when you feel not good enough, you feel separate, and when you feel separate, you feel alone, and that is one of the greatest pains a human being can ever feel, and that's really ... I had a very hard time growing up and a lot of isolation, and I shut myself down in many ways, and that's why when I saw this older man, Henry, wake up, I was like, "Oh, my goodness. Oh, my God, we can wake up. We can be awakened," and that's what you've described with your music therapists go in, and these people are like, "Oh, wow, yes. There are rhythms of life that I can share with you, and we can sing, and we can do music, and it can even go back into my memory, and oh, I have these stories I could tell you." I decided that the place that I wanted to play with was trying to reduce pain. Like you, as a doctor, you want to reduce- You want to reduce the pain and the struggle, and one of the greatest struggles that I see is loneliness and disconnection. I feel like our culture ... There are things we all need to survive, and to live, and to thrive, and sometimes commercial society says, "All right. You want those things; you got to pay for them." So it puts walls between what we want and what there is, and that's not really the way life works. If you swim in the ocean and you grab a fish, it's not like you paid for it. Well, you swam for it. That's for sure. Or you pluck a pear from a tree. It's not like you grew that tree. I'm not sure that this sort of way we are creating safety for ourselves is working, and I think it's falling apart in many ways, and so, again, I go to the very deepest place. So I developed these headphones that you could give to somebody with dementia, and it has a little hole in it, and you can put their music in it, and you can plug your headphones into their headphones, and so you can listen together, and your eyes can meet, and you can be in the music together, and I thought that was beautiful. Then I made an app so that anyone could sit with another person and try and figure out what is that deep music that's inside the soul of another person. So you can do that. But the key thing I feel is that what I've learned. If you watch Alive Inside, you see all these people awakening. But what you don't see is me on the other side of the camera going, "Oh, tell me that story. Oh, my God, you're so beautiful. Oh, yes, I want to know more and tell me. Flower. Let me see you flower." We are creatures that are called into becoming. You take a child, and you just put them in a room, and you leave them there for 14 years, you're not going to have a great kid, but if you go in there every day and you teach them how to be human, and you teach them the rules of being human, you bond with other people, you connect to them, you be kind to them, you look in their eyes, you learn to feel what comes out of another person's eyes, and you learn to give to another person through your eyes. I mean the eyes is the only organ that goes both ways. There are both receptors and apparently ... I was reading the other day ... I wish I could quote it better. But apparently, there's something that comes out of the eyes. That's why we call the eyes the windows of the soul. You're a doctor. Dr. Bob: I'm not sure what emanates from the eyes, but it kind of feels like when you're in somebody's gaze, when you're looking deep into their eyes, that there's something either reflecting back or coming out of it for sure. Michael Rossato-Bennett: At the very least, there's expression. At the very least, there are tears. Something is coming out, even if it isn't a ray. But that's the amazing thing that we're understanding now, and this goes back to the illusion of loneliness. We've created the structure where you can be lonely, where you can be a separate entity that doesn't connect with other entities, and the terrible thing is that's engineered. The truth is that we are not separate. We're talking over Skype, and my ideas are affecting your brain, and your ideas are affecting me. But if we were sitting in the same room for the amount of time that we've been sitting, your cells would be in my body, and my cells would be in yours. Every cell in your body I think changes every seven years, and the building blocks of you have been white people, and black people, and brown people, and hippos, and dogs, and ducks, and dinosaurs, and fish. I was reading this amazing book about old growth forests, like dirt. There's no such thing as dirt. There are rocks, and there's whatever, but every single piece of nutrition that has ever passed through your lips only has nutrition because vegetable matter has gone through the butt of a bug. Dirt is bug pooh, and without bug pooh, there is no nutrition in anything that grows. So we're not special. We are part of everything, and we've just created this system that ends up taking our children and putting them in these institutions, and telling them to stay there for 20 years and to compete for a few little remaining spots at some big colleges. As children, we're forgetting how to be children. And we have our elders, and, oh, my God, have we abandoned them. Oh, you're worthless. You just go sit in the little room over there. I'm sorry. Now you got a little emotion running in me, and so I said let's bring these two groups together. Let's bring the very old and the very young together, and what you do when you do that, it's like a magnet. These groups are meant to be together, and they're engineered apart. So basically a lot of people have seen Alive Inside, and they call me, and they say, "Hey, let's do something." I'm like, "Okay. Let's do something." So we're down in Mexico, and there are these abandoned elders, who are literally taken off the streets by this foundation, and of the thousands and thousands that they could help, they can help 250 a year or something, or actually more at a time, because the population changes, but it's only 250 at a time, and they were bringing in these young psychology students who sit with them for 14 weeks for an hour or two, and they detective. They use the app, and they find the music of these elders of their youth, and they listen to it together, and they learn their life stories. We've created another thing called Memories, which is this ... It's a very simple computer program that basically lets you create a digital, communally create a digital scrapbook for somebody. My vision is it's going to happen I the next year, is I want every hospital room, every nursing home, that you're going to be able to go and some volunteer will have created the life story for these elders, so that anyone in the healthcare community can just scan the QR code on their picture ... We're making these necklaces for them, and you'll know their life story in two minutes. You'll know where they came from, who they loved, what they did. Dr. Bob: I love that. Michael Rossato-Bennett: What their music was because it's just crazy. I've seen so many healthcare situations, where I've seen people care for people for 10 years, and love them, and not know who they were. Dr. Bob: Exactly. Not know a thing about them. Michael Rossato-Bennett: Not know a thing about them. Dr. Bob: Right. And that's what drove me crazy for years and years. I was an emergency physician, and I see these incredible people coming through, and they're a shell. They're in this shell, and if someone takes the time to actually connect with them and ask them something beyond when's the last time you have a bowel movement? Where does it hurt? But to actually be interested in who they are. I was just memorized, fascinated by what would come out, and that's a lot of why I transitioned in my career into doing something where I got to honor these people for the person they are and always have been, even though at this stage, it's physically they're different. The spirit inside of them, the essence of that person is unchanged from where it was when they were flying bombers in World War II, or dancing in competitions at 18 in the 1930s. And so what we do, I think we are aligned in the work that we're doing. I will want to connect with you further because I really do want to talk about how to bring the programs that you're talking about, especially the program with the youth together with the elders, and sharing this. Michael Rossato-Bennett: Oh, I would love to talk. Dr. Bob: So we may end up trying to schedule a second call. I'm going to wrap it up soon, and I just really appreciate your honest, thoroughly passionate view that you were able to share. I do want to make sure that people know how to get more information, and there will be links on my website to the Alive Inside Foundation site, and I'm happy to connect people with you. If you want, you just let me know. Michael Rossato-Bennett: Yeah. Dr. Bob: What kind of connections you're looking for, how we can help to support your passion and your movement because it's life-changing and it's revolutionary. It shouldn't seem revolutionary, because it's pretty simple basic stuff, make connections, and you create joy, right? Michael Rossato-Bennett: Well, I think it's revolutionary. We call it an empathy revolution, because certain things in our human vocabulary have been devalued, and a lot of people, myself included, it's taken long life journeys to be able to just honor the treasure that I have inside my chest. The fact that I am alive is such a treasure, and it's so devalued in our culture. The children, we don't honor the life in children. We don't honor the life on the planet. We don't honor the life in our elders, and it's all there is, and we only get it for a very brief time, and it breaks my heart to think of how many years I spent beating myself up and not enjoying life, and I look around, and I see so many people who are not able to really ... They only get this brief time with this incredible treasure called life. And that's why I bring the elders and the kids together because I think the elders actually teach the kids, "Hey, you're alive, and you're not going to alive for much longer, and look at me. This is what the end of life looks like, and guess what? I'm engaged here. I've only got a short time left, and I'm engaged." It's been shown that older people live with incredible pain and smile, whereas middle-aged people if their back goes out and they lay in their bed for a week. Dr. Bob: That's right. And they bitch and moan about how miserable they are. Michael Rossato-Bennett: Yes. Dr. Bob: Well, don't beat yourself up too badly about time that you've lost. You have lots of time left to contribute, and you're obviously doing a great job of that. So Michael Rossato-Bennett-Bennett, thank you so much for taking time and sharing your passion and more about your project and your mission, and best of luck to you, and hopefully, you'll be willing to come back, and we'll do some followup on another episode. Michael Rossato-Bennett: Well, thank you for calling me, Bob. That was very sweet.…

A Life & Death Conversation with Dr. Bob Uslander

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What Would You Do If You Had a Limited Time to Live? A New Film Shares People's Ideas, Kimberly Ouwehand, Ep. 27 34:18

πριν 6 years34:18

34:18

The Teal Chair, a film that was nominated for the Future Filmmakers Award this year at Sun Valley Film Festival was the brainchild of Kimberly Ouwehand. Find out why the hospice community outreach coordinator wanted to create this film and how its impacted her life and others. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Treasure Valley Hospice website Transcript Dr. Bob: Kimberly Ouwehand is a passionate Community Outreach Coordinator for Treasure Valley Hospice in Nampa, Idaho. When Kimberly got the inspiration to videotape people answering the question, "If you knew you had a limited time to live, what would you do," amazing things started to happen. She collaborated with a local group of high school students, and what came out of it is an extraordinary documentary called The Teal Chair. The film was nominated for the Future Filmmakers Award at the 2018 Sun Valley Film Festival. In this podcast, Kimberly shares how the film came about and how its creation has impacted her life and the lives of many others in her community. I hope you enjoy it. Share with me, the listeners, a little bit about your journey, your working in hospice, and how long have you been part of hospice? How did you get into hospice, and kind of where are you in that, in the course of your career? Kimberly Ouwehand: Well, I started out in clinical. I worked in internal medicine for about 10 years, 10 to 12 years, and kind of fell into hospice, because, and it's kind of a different animal, because you're in people's homes, and you're dealing more with people than you are the clinical side of things, and so I've been doing hospice for about seven years now- Dr. Bob: Okay, and in what capacity? Kimberly Ouwehand: I love it. I do outreach, and communication, and education, so kind of I'm a marketer for it, but I do a lot of hands-on and outreach. Dr. Bob: Got it. Kimberly Ouwehand: A lot of education. Dr. Bob: I think probably a lot of people don't realize ... Well, a lot of people don't realize a lot of things about hospice, right, but- Kimberly Ouwehand: Yeah, that's for sure. Dr. Bob: When they hear "marketer," they probably don't understand how much that involves being with families, and patients, and kind of in the thick of things, because I know I've been associated with hospice for a while now, and sometimes the marketers develop such incredible relationships, because they're the first point of contact for a lot of these folks and people who are in pretty somewhat desperate situations or very vulnerable. It's a really important role to be playing, don't you think? Kimberly Ouwehand: I do. I wish sometimes we didn't ... I mean, I hate to use the word "marketer," because traditionally it's pushing sales and things like that. I find myself making connections and building, like you said, building relationships so that people know, like, and trust you, and they'll call you whenever there's question, and they don't understand something. I feel like my reputation should be built on trust, and I feel like I've done a pretty good job of that so far. Dr. Bob: Good. Well, you've expanded beyond just doing the hospice marketing to take on a whole 'nother realm and project, so The Teal Chair. Tell us how that came about. Kimberly Ouwehand: Well, actually, it started out with just a very simple question. I was getting frustrated that people were waiting way too long to use hospice services. I mean, hospices, it is medical, and palliative and comfort care all at home, but hospice traditionally, especially for the older generation, feels like you're signing off on a death wish. They were missing out on a lot of other services, and I loved that hospice was all about surrounding the family with the patient and making it ... Well, it is one of the most important things you do in your life is die well, but I was getting frustrated, because it's a hard subject to bring up, and people were afraid to talk about it, and doctors were putting it off way too long. I wondered if we'd made it more of just a simple question, "If you knew you had limited time, how does that change the way you live today?" That question seemed a little bit softer, so I thought to myself, I thought, "Well, I have this teal chair," and I was just going to plop it in the middle of some public area and pull people off the street and just ask them a question, record it. It was going to be kind of a short YouTube video, but what happened was, I realized I had no video skills whatsoever, and my son had taken a video class at the high school, and I just liked the rawness of it. I didn't want it to be a production. I wanted it to be real. I didn't want it to be ... I just wanted it to be honest, and so I went and asked the teacher over at Eagle High School if he had a couple students who would do a YouTube video. He said, yeah, he had a couple students, and so he kind of ... I found out later he kind of coerced them a little bit to do this death video. Dr. Bob: They were resistant. You think- Kimberly Ouwehand: That's kind of- Dr. Bob: ... that there was resistance- Kimberly Ouwehand: Yeah. Dr. Bob: ... initially? Kimberly Ouwehand: There was a little ... Yeah, but he got five incredible students to ... Sorry. Incredible students to take part in it. The outcome was phenomenal. It took legs very quickly. Dr. Bob: Yeah. I can imagine if you get the support and you get sort of the passion of youth, and it's a creative process that the school could support. It's one of those things that if someone takes that initiative and puts the pieces in place, people want to talk. Right? They want to talk about these issues, and they just need to, it just needs to be presented to them in a, I guess in a safe way, maybe an inspired way that you're going to do good for other people. That's what I've found. When was the, like how long did it take to produce, and what's the status of the film, and I have a lot of questions, but- Kimberly Ouwehand: I know. It is an amazing story. We started out at a venue called JUMP downtown. It was a great collaboration. They were doing a Day of the Dead event, and I thought it was colorful and fun, and festive. The more I learned about the Day of the Dead, the more I appreciate it, and so I thought it would be visually stimulating for the students, so we went down there, and it just grew into one team did events, did the filming of the event on the outside, people looking at the altars. There was, a Before I Die Wall was set up there. I don't know if you know about that, but it's an amazing exhibit. Then the other half went up into the studio, and they were so excited because it was a professional studio. They had the green, and all the lighting and everything, and we were able to take 22 people off out of the event and bring them into the studio and ask them this question. "If you knew you had limited time, how does that change the way you live?" We interviewed people from eight years old up to I think the oldest we've interviewed that day was about 89. It was just, it was interesting. It wasn't scary. It was thought-provoking, and one thing led to another, and I said, "Well, why don't you submit it into the Sun Valley Film Festival for Future Filmmakers?" We made it instead of just a YouTube, to a 10-minute one that would fit the criteria, and submitted it, and out of about 120 across the nation, we were nominated. There were, I think, 12 nominations. We went to the Sun Valley Film Festival, and then since then, we're, it's going, we've sent it to Washington, D.C., to the National Hospice and Palliative Association, and I'll be submitting it into the American Public Health Association- Dr. Bob: Awesome. Kimberly Ouwehand: ... for educational pieces, because what happened is, it just started this huge conversation, and it's not only about dying, but it's about the different seasons you are in your life and what that looks like and having those conversations, because you never know if you're going to die suddenly or if you're going to have a chronic illness that will take a long time. Dr. Bob: One of the things that came to you when you were just posing the question to people, "What would you do differently, or how would you live, if you knew you had a limited time," did people ask you like, "What do you mean by a limited time? Like are you talking about days or months?" Did that seem to be an issue, or did they all sort of feel like they could take that and speak to it without getting more clarity? Kimberly Ouwehand: That's a really ... I mean, nobody's asked me that question, but some people did, like about how much time, but most people didn't ask. They just thought, "Okay. Where am I right now, and what's important to me?" Like the eight-year-old said he wanted to have a pizza party, and you just realize that the shorter, the younger you are in your life, your life doesn't expand very much, and then the teenagers, the college, they wanted to experience life as much as they could. They wanted to get out and just learn as much about the world and everything around them, and then it seems like, and I'm kind of stereotyping it a little bit, but the career, your middle-aged people would be more focused on balance of life, realizing really what is important, not working so much. The family becomes important... Working so much, the family becomes important. And then older people got it was usually something to do with a memory, revisiting a place or a person, or for sure it was all about family. Dr. Bob: I imagine some of them would want to have a pizza party. Kimberly Ouwehand: Yeah, I mean, and the conversations that's come out of it. When I set it up, I set up interviews, and we interviewed doctors, and we interviewed a couple of professional people. And we interviewed a hospice patient and a family who had hospice. When we were doing the interviews, I would think to myself; these kids are going to think it's stupid, it was a waste of time, they're not going to pull anything off of this interview. But what they did, and pulled, and put together, I was amazed. I thought he knows it's boring; they're not going to think it's exciting, they're kids, you know. But they pulled stuff off that I would never have thought of. Some of the pieces that I thought were really long, I had people come up and say that really spoke to them. So you really can't make it into one topic, it's a super broad topic that hits people in all different areas. Dr. Bob: Yeah, it's so personal. That's part of the idea of how do we spend our time, what's important to us, what do we value most? That's what we're getting at, and everyone has such a unique experience. So, I don't want to put you on the spot Kimberly, but what would you want to do if you knew that you only had a limited time? Kimberly Ouwehand: You know what, that's- Dr. Bob: Did you answer it? Were you interviewed? Kimberly Ouwehand: No, I was not interviewed. And I don't know if I really know what I would do because I feel like my life is centered around that already, that everything I do today, it matters. So I hope that when I do die, if I die suddenly, that people will look at my life as I've lived it, and the things that I've done, that I was nice, and that I was kind, and that I was just a good person, I think. But I don't have any bucket list things. I wouldn't do anything differently, really. Dr. Bob: I agree with you. I'm in that same place, and it really feels good to feel like I don't really need anything else. I probably would want to just be with my family, and have friends. I think about it, you being in the hospice world and me being, caring for people at the late stage of life and many of them in their final days and weeks of life, I think about it often. Like, where am I? Am I complete? Am I good? It's a really gratifying feeling to feel like I'm good to go. I would hate not seeing my son grow up and all these things. But I don't feel like there's anything undone or unsaid at this moment. It feels powerful to me. It sounds like you're sort of in that same place. Kimberly Ouwehand: Yeah, and I agree with you too, in the film, I asked one of the interviewers, what would he do? It was interesting because really, and I can see this with a lot of parents that they would hope that they had left enough of them with their children, that their children wouldn't forget him, and his values and what he was like. I think for parents, and I'm a parent too, but my kids are getting older now and more independent, I feel I've done a pretty good job. But I just would want everybody to know that I did love them. The parent thing is a little hard because you're leaving something that you can't follow up with, I guess. Dr. Bob: Kind of unfinished. You feel like you're not, you feel like there are a little bit more unfinished business and a gap that be left more ... I agree with you more so than if the kids were already adults and launched. Was there anything you can think of that was really surprising, that people said, that you, "Wow, that was really interesting," or crazy... Kimberly Ouwehand: Yeah, there was a lot of things that people that I took away from there, just with a little bit of different perspective. One person said, and I thought this was really interesting, and I think I live my life a little bit differently because of it, was, "If you give up one thing if you focus on one thing, sometimes you have to unfocus on another thing." In other words, you can't have it all. You can't focus on everything because then it doesn't, you don't hit the bullseye, basically. I thought that was interesting because I think sometimes we try to do too much, and we forget that you can't. And it's okay not to do everything. And we can't do everything well. And that's why we have people in our lives. That's why we have people like you doing podcasts that are reaching out to a whole different demographic that I can't reach, and I'm doing my thing that you can't reach. I think that put a new perspective on a stressful job, to be honest with you. Dr. Bob: I'm sure that the gift of being involved in that, I'm sure there were many gifts, but one of them was this new perspective and the wisdom that came out of people speaking from their heart, from this place of a different awareness than they would otherwise have. I wonder if, how many of the people that were interviewed, who were able to share what they would do if they had limited time, started doing more of those things. If the impact is not just on the people who watch the film, but the impact on the individuals who got to reflect on that. Kimberly Ouwehand: I feel like the interviewers that I knew, all said that they had conversations later, because their families ask, "What are you doing?" I don't know about the other interviews, that we did at the jump event, the Day of the Dead event because I kept that anonymous, so I didn't want to put names or tag any links on that. So most of them, I never really heard back from. Dr. Bob: It'd be interesting if there was a way to come back and interview those people again. Kimberly Ouwehand: That would be, I know. Dr. Bob: I think we talked a little bit earlier. I think it's so important to get the conversation about life and death, and preparing, and living intentionally, to the younger demographic, into college age kids, and high school age kids, and even elementary school kids. I just feel like we have become such a death-phobic culture and we don't allow ourselves to promote these conversations. I think it just continues to, this fear continues to escalate as we get older, and no one's having the conversations. Do you feel like the film, I haven't seen it, I'm looking forward to seeing it, do you feel like it's something that could be used in schools to help open up the topic and stimulate conversation and sort of a structured format? Kimberly Ouwehand: I really do. At this point, because it really only got finished, there's a 30-minute documentary, and that really didn't get finished until May. So we'll be doing more screenings, but we're talking with BSU, Boise State University to implement that as part of their curriculum in their nursing program. And then also, with the Boise State Center of Aging and their social workers, we will probably be doing a couple of presentations with that. The biggest resistance that I found interestingly enough is with the medical professionals, the ones that are already doctors and physicians. And that one, I've been very surprised at how resistant they have been in having it be presented as a topic. Dr. Bob: And why do you think that is? Kimberly O.: I think number one, they are busy, and they don't necessarily have the time, or maybe even the energy. I think a lot of times, after you get through medical school, you feel like you're an expert in whatever you're doing so you don't think anything outside of that, except for your bubble, I think. I don't know; I'm not a doctor. Dr. Bob: Yeah, no, well I am, and I think those are accurate. But you said there's resistance to actually them coming out and viewing the film, or somehow allowing it to be shown in different venues? I'm curious, it would seem to me that this is the kind of thing that anybody would benefit from seeing, and watching, and taking the teachings. I apologize on behalf of the medical specialty. Kimberly Ouwehand: Oh no, and I don't mean... Dr. Bob: I do. I find myself doing that. I find myself doing that all the time. I hear people talking about all the challenges they have with the medical- Dr. Bob: On all the challenges they have with the medical system and with physicians in particular, and I mean, I'm diverging a little bit, but I do see all the challenges, and I see physicians being stretched and very narrowly focused, and people suffer because of it. Both from when the medical care, as well as the physicians aren't open in many cases to thinking outside the box and supporting something like this project. Anyway, I do find myself apologizing on behalf of physicians [inaudible 00:22:39] to patients. Kimberly O.: I sound like I'm bashing doctors and physicians, but I really am not. I mean, again, it goes back to the focus physicians who are specialties. They need to focus on that. They can't be looking at every other angle, because they'll lose their focus. They'll lose their specialty. I think too; they are asked to do a lot. They're busier now than ever; the paperwork is crazy. Covering your bases all the time. Healthcare, in general, is just getting more complicated. I don't necessarily feel that they're being resistant, but I do feel that they can only handle what they can handle, and one more thing, even if it is outside of the box a little bit, might be just a little bit ... Until they understand it, I just think it might be harder for them to grasp. Dr. Bob: Right. I think you're being gracious, and that's nice, because these are the kinds of things that, yes, it's important to focus on your area of expertise and your practice and to try to maintain balance in your life, but this is the kind of thing that helps to further our humanity, right? Kimberly Ouwehand: It does. Dr. Bob: I mean, this is the stuff, every physician needs to work on their humanity, on their compassion, and on their empathy. It doesn't matter what you do, what specialty you're in, this kind of project is something that everybody should be at least open to bringing in and supporting. That's my thought. Kimberly Ouwehand: Yeah, I appreciate that. I think too; I think sometimes physicians need to stop and think about their own mortality. I think they forget that they are ... They're going to die someday too, and it might help them center what's important to them a little bit too. I would hope, I hope it's one of those films that people take and just apply it to where they need to apply it, you know? Dr. Bob: Yeah. Kimberly Ouwehand: I think too, you mentioned earlier about the younger generation, the high school students, and the college students, and when we had started filming, we started filming the first week of November, and later that month, one of their classmates died in a tragic car accident. At the end of the school year this year, one of the students at the high school committed suicide. Death is around them. It's interesting how they handle it, though. I don't know how they handle it, quite frankly. I don't know if adults put what we know onto kids or if kids just know how to ... It was interesting, 'cause there was hardly any talk about it at school. Dr. Bob: It's hard to imagine that that's healthy. You would think at least you want to have an opening for the kids who feel like they do need to talk or to ask questions or to come together. You'd like to think that they would put that in place to give an opening for those who may be struggling with it more. Kimberly Ouwehand: Yeah, I agree. I think they made it ... I mean, I think the students know they have a counselor that they can go to. I think some of the friends, the girl that died in the car accident, they had a vigil, but it was done just through her girlfriends. It wasn't really ... They didn't talk about it at a school level, and I just thought that was interesting. Especially when it comes to the suicide. There have been several suicides in high schools here, and they don't talk about it. I don't know if that's for the family's sake, or how they handle that in the schools. They don't really tell us, so it's interesting. Dr. Bob: Yeah. It's scary. It's also I think more than people realize, there's also a lot of suicides in medical school, and physicians. It's increasing in numbers. Kimberly Ouwehand: I think that's true, and there is a lot of emphasis on physicians and mental health care, taking care of their mental health. I think you're absolutely correct. Dr. Bob: I want to take it back to the film, and how do I get my hands on not a copy probably, but the ability to get it and show it and potentially have an event around it, or do a showing? Kimberly Ouwehand: At this point, the 30-minute documentary, we're editing it just a tiny bit, and it will be available by link. The 10-minute one that went to the Sun Valley Film Festival will be on our website, at TreasureValleyHospice.com. It's not up yet, but we're working on that. I'm happy to send you a link so you can see it- Dr. Bob: Awesome that'd be wonderful. Kimberly Ouwehand: ... before then. Dr. Bob: Well good. I'm excited, and this is the kind of thing we need to do more of this, and it's cool, 'cause this is taking a softer approach, right? It's not a death café; it's not in your face. It's taking the backdoor approach to are you really living your life intentionally? And doing the things that truly matter, and not ... Go ahead. Kimberly Ouwehand: I'm sorry. I keep interrupting. Dr. Bob: No, that's okay. This is your interview; we're here to hear you. Kimberly Ouwehand: I think the film really almost mirrors a little bit what hospice is because hospice is taking what's really important to you in your life, and everything that surrounds your life at that moment in time. I feel like it's a very softer approach to really what hospice does and is. I hope that's what the message is, in the end. Dr. Bob: Yeah, that's nice. You're right. Many people don't get that. Society, until you've had a personal experience with a really good hospice team, the perception out there still for many people is hospice is basically just where you go to die, and we know that that is ... There are times when that's true when somebody's dying, and they're in their last stages, and hospice comes in and helps facilitate it and make it more comfortable. But there are so many people who spend months on hospice, and they live so much more richly, and so much more peacefully, because of that support. It really is about living well until you die, as opposed to just dying, and I- Kimberly Ouwehand: And the family, too. Dr. Bob: Yeah, that family support. I can see the film helping to further that concept and that philosophy. I'm looking forward to it, to seeing it and sharing it, and who knows what other projects you'll be getting to next. I did an interview not long ago with Michael Rossato-Bennett, who directed the film "Alive Inside." Have you seen that? Kimberly Ouwehand: No, but I'd love to- Dr. Bob: Wonderful film. It's about music and bringing music to people with dementia, and people who are isolated. It started out as just a little project that someone asked him to come and do some filming, and out of that, he has now created a foundation, and there are iPods and headphones being given out to people all throughout the country, and it's launched into something beyond what anyone could ever have imagined. Who knows? Something like that could be happening with you as well. You never know. Kimberly Ouwehand: I hope so. You never know. Thank you so much, Dr. Bob.…

A Life & Death Conversation with Dr. Bob Uslander

1
Peaceful Deaths for People & Pets, Liz Fernandez, DVM Ep. 26 33:46

πριν 7 years33:46

33:46

Hear beautiful stories about end of life. Dr. Bob and Veterinarian, Liz Fernandez, discuss how there are similarities in their end-of-life work that helps people, pets, and families who are dealing with end-of-life issues. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Liz Fernandez website Dr. Bob: Liz Fernandez is a doctor who makes house calls. She gets to know her patients and families intimately, and she frequently provides counsel and guidance as her patients head toward the natural end of their lives. In many circumstances, she lovingly administers medication through an IV that allows her patients to fall asleep and die peacefully usually in the arms of their loved ones. What Dr. Fernandez does is legal and acceptable because she's a doctor of veterinarian medicine and her patients are mostly dogs and cats. Although I don't perform euthanasia which is illegal in this country, I am with many patients as they die peacefully after self-ingesting medication that allows them to have a quick and peaceful death. In many respects, Dr. Fernandez's practice is very similar to mine. We both drive all over the place to make house calls, we both develop very intimate relationships with our patients and families, and we both help to guide and counsel as our patients approach the natural end of their lives. In this episode, we share some of the beautiful and some of the challenging experiences that we've had, and we discuss how it affects us to be in these emotionally complex circumstances so often. I hope you find it interesting, informative, and meaningful in some way. Liz, thanks for coming on the show, and I'm looking forward to having you share some of your insights from your really fascinating career. Can you just share with me a little bit what is it like? You have a unique model of practice for a vet, and what's a typical day or typical few days for you? Liz Fernandez: I practice in Ventura County. I work with small animals, and I do house calls, and most of what I do is Chinese medicine acupuncture, so most of my clients, my patients are older. I may see anywhere between three to six patients a day, and I drive all over the county. Sometimes I keep it localized in a smaller area, but my radius is about 60 miles from my house so it could be anywhere in that to give you an idea. Yes, I drive about 30,000 miles a year- Dr. Bob: Which is kind of similar to me. It sounds like your work is in many ways similar to mine; going out and meeting with older patients and addressing the concerns that they and their families have and supporting them. Liz Fernandez: Right, and so I have ... Since I see them ... I see them. I'll spend an hour or so. Each appointment is about an hour unless it's an initial appointment and it's usually about two hours. I may be seeing them once a week, or once every other week, or once a month, so I get to know the clients quite well and as their animals, either dogs or cats, for the most part, start to age and get near to that point when they're going to have to make some decision, we've already had probably at least a few discussions if not more; just some in general and some more specific. It's nice because I do have that connection already with most of the clients that I work with, and that makes it a lot easier to move into that idea of now we may not be trying to get them better, we're just trying to keep them comfortable. Dr. Bob: Got it. So you have the conversations ideally upstream about what will happen when things change, and you're looking now at a comfort-focused end of life scenario. It's interesting because you have an option to help create a very peaceful end of life for your patients that we don't necessarily have. Not necessarily have, we don't have. We don't have euthanasia. It's not legal; it's not available. Fortunately in California now we do have the medical aid in dying through the end of life option app, so there is another conversation that can happen when people are open to it, but everybody is aware that euthanasia is a viable and acceptable option at the end of an animal's life. Liz Fernandez: Yeah, and I find it fascinating because with the animals, we almost more often than not, people demand it for a multitude of reasons; the most common being, "I don't want my pet to suffer." That I totally understand and I agree with, and I support them in those decisions. It's just fascinating that ... And part of it I guess is with people we have more options in terms of supportive care to keep people comfortable and just have somebody there 24/7. That's pretty very challenging for most people. I have had clients that have the ability to have somebody with their pet 24/7 offer doing whatever it is that they need to have done in a home situation. It's not like they're putting him in the hospital or something and not being with them, it's just that they can manage all of those little things like if they can't get up from by themselves that somebody can take them and help them to get up and go outside and if they're not continent then they can take care of that in terms of changing the bedding and that sort of thing in helping them. But that's not the norm. For most people, it's just not an option. What do you do if you can't be there or if don't know someone who can be there or afford to pay someone to be there, what do you do? This other option is available especially when there's no hope of improvement. And so that's what happens. Dr. Bob: It's interesting to think about those scenarios because it's just natural to make the comparisons, right? This is between people and animals, and if you have a person who needs care to manage their ADLs because they can't get up by themselves, they can't clean themselves. That's not enough to justify having their life end. For some people, it may be that the complexities of creating care- Liz Fernandez: The other part of that is that a lot of times, it's emotional least distressful for the clients because they realize their own limitations whether that be physical, emotional, financial. All of those things factor in, and so they wind up making a decision because not that they think it's what is necessary that the animal is that near to death that that's what is appropriate, but because the entire situation is such that they can't handle it. If you have an 85-year-old woman who's got 100-pound dog and she doesn't have anybody else to help or take care of it, she may be healthy within herself, but to be able to meet all the needs of a big dog- Dr. Bob: That's dangerous. Liz Fernandez: Yeah, it's dangerous. Or even somebody who's 50, but they have a bad back. Dr. Bob: That part like knowing that the dog is not or the animal is not necessarily imminent, that close to death, or maybe it's not even suffering that much, right? It may not be in pain, it may just have these limitations, and if the family was able to meet those needs even though the dog is not living its ideal life like a human being who's 90- Liz Fernandez: Right. A lot of people feel like if they can't get up if they can't do those things, that they are suffering, that it is not a life that they would want, so there is that. I would say that with most of my clients they do a really good job of trying to make things work, but on the other hand, most of them have co-morbidities that are ... Like if their back legs aren't working anymore, there's a good chance that they probably have some other issues going on whether that be kidney disease or sometimes some underlying, whether it's cancer or heart disease or other things that make it even more challenging. I honestly can say that I don't find myself in situations where I feel that it's inappropriate. Dr. Bob: Well, imagine if you did then you would find other solution. Liz Fernandez: Exactly. I mean, we each have to do what we feel in our heart is right or for us, but I also try and tell people that there's not necessarily an objective right or wrong. There's a right or wrong for you in this moment, but not necessarily a right or wrong that is somewhere posted in a book somewhere that says that this is the way you have to proceed. Because we have to be honest and compassionate with ourselves as well as in the whole situation. Dr. Bob: Well, I read your book Sacred Gifts of a Short Life: Uncovering the Wisdom of Our Pets End of Life Journeys, and it's really touching, it's really well done and smart. Liz Fernandez: Thank you. Dr. Bob: It was great stories and as I'm reading it, I so often I'm finding corollaries to my life and my practice and my thought processes. One of the things that was really poignant for me is your ... One of the stories, I think it comes up a number of times when people ask how they'll know when it's the right time. For me being a physician who assists some patients through medical aid in dying, there are times when people get a prescription for a life-ending medication, and one of the big questions that they have and that their families have is when will I know it's time? When will I know that it's the time to take this? What their experience or if they're struggling to go through is what your families are dealing with. The difference, I guess the difference in my situation with human beings is that they're the ones making these decisions for themselves, no one can make it for them. And they recognize that when they do take this medication, they may be robbing themselves or ... They're clearly shortening their life, but they may be robbing themselves of some relatively reasonable time, and they don't know. There's no way to absolutely predict what the future is going to hold and sometimes they'll be inclined to take the medication sooner because they're afraid that things will change and they'll lose their ability. They'll lose their mental ability, the physical ability, so there's this back and forth dialogue they have with themselves and questioning. Almost every single time, I've told them, "You'll know when it's time. No one's going to tell you it's time. You're going to know, and when you know it, you know it. There's been a couple of people out of the many dozen who I have been with who have still been slightly, slightly, hesitant, reluctant questioning it and even to the last hours. What I recognize is those people are the ones who have younger children. No matter what they do, separating any moment sooner than they absolutely have to is a challenge. Those are the ones that tend to be a struggle. But like you said, they know when it's time, sounds like your families come to a place where they just know now is the time. Liz Fernandez: Yeah, and I have definitely tried to work with people and something that I do talk about in the book as far as just ... Because even in our profession we have a tendency to, and as a profession, this is so, and I have tried to steer away from this, but we're the ones that like to tell people when it's time, and people like us to tell them oftentimes. What I have found throughout my career is that if there is not complete 100% choice that's made by the person who's involved with the pet, then they sometimes feel guilty, feel pushed, feel resentful that someone else told them that they needed to do something when they weren't ready. I try to avoid that and make sure that they are comfortable and that they are listening to that place within themselves that we each have that I think it's so important not just to listen in this situation but throughout our lives, that we start listening to that, that we begin to trust it, and then we can act on it. This is a situation that really invites us to do this in a wholehearted way, and if we have practice doing that throughout our lives, it becomes much easier. What I ask people to do is to try and get very quiet and feel into their body and have someone else perhaps even present with them and feel into their body with the idea that, "I'm going to euthanize my pet today," and then just feel what happens to them. The person who's with them can watch whether there's a tenseness that happens, whether there's a clenching or a contraction, or if there's a relaxation and opening up because the body is reacting to the deepest truth. I think that can be very helpful. I had had a couple of situations where I've been with somebody as we move through that process and I've reflected to them what I have seen, and in one situation I said when you get your poll body relaxed when you thought about just going ahead and letting Sophie go today. Then we talked a little bit longer because it didn't seem like she was ready to go ahead with that. But what I told her and what we talked about was that it really was okay that she felt that way. That it was getting really challenging and very difficult to take care of her. When she actually accepted the idea, so her body was just asking, inviting her to become okay with that as a possibility, and recognizing it and forgiving herself for having that feeling, for feeling like I can't do this another day. And yet there were some things that we could try, and we wound up trying them. And then would about two weeks later, things have deteriorated further, and she was very clear, and she had no question. But what her body actually was doing when she relaxed was not saying that it needed to happen today as much as it was saying that she needed to accept that as a possibility and that it was okay that she felt the way she did. Once she became okay with this feeling that, "I can't do it anymore," she actually found the strength to be able to go on a little longer. But he had to accept that within himself first. Very interesting. And the opposite happened. Both of these situations happened within probably two or three months of each other, and the other situation was that the lady just did not want to euthanize her pet. And she knew. I mean, there were all sorts of signs from the universe, and from her husband, and her husband had a dream, and all of these different things and she just knew, and he was really not doing well, but she just couldn't let go. I said to her because again when we went through the process, not doing it is what gave her the most relaxation in her body. And I said, okay. Consciously and in her brain, I said, "Be okay with that. It's okay that you can't do it today. Because sooner or later if you don't do it for him, he's going to do it himself." And he's not really suffering; he was just in a point of not really eating anymore, but just not moving. You know what I mean? He wasn't in any kind of excruciating pain that we needed to address or anything. And once she could finally just say to herself that it was okay, she could forgive yourself for not being able to do what she really felt was the best interest of her pet. Because she just loved him so much and just, it's like ... When she completely surrendered to that, she sat with him for a few minutes and then she said, "Let's go ahead." Dr. Bob: It's beautiful. Liz Fernandez: Yeah, it's quite fascinating, but again if you start to listen deeply and can accept whatever happens or whatever wants to happen and trust it, then I think that we do have the answers within ourselves to make these difficult decisions. Dr. Bob: Actually I appreciate that you shared that. Because on a couple of levels, I think what you're sharing is so vitally important. On the one hand, I think that's what we need. Everybody needs ... Moving to the human realm, we all need to be able to go deep inside and become comfortable with the idea that one day we're going to die. Liz Fernandez: Yes, just have a good relationship with death. Dr. Bob: Yes. And not to say, "Okay, I'm ready to die." Not to say that I've got everything prepared or that emotionally, financially, legally, or whatever. But to just understand and feel this sense of acceptance and a sense of calm about it, and if you can't get there, then the work needs to revolve around figuring out why what is it that's keeping you from feeling that sense of acceptance or calm about it. But once you can get there, then everything is a bit easier, I think it's brighter, a little bit more ... It's almost like it's bonus time. Now I've accepted this; there's my ultimate endpoint, now let's get on with life. Liz Fernandez: Right. Part of why I wrote the book was not only just for clients, but for practitioners and then just the general public. Because the whole idea is what my book tries to talk about and what I'm passionate about is just that. It's the idea of having a relationship with death that makes it less scary. Be able to embrace it, to dance with it, to recognize it everywhere. Things are dying all the time. We push it away so much we deny even the idea. No one wants to say the word. It becomes this big scary boogeyman and the big monster under the bed. Dr. Bob: It does not have to be that way. Liz Fernandez: That's a cultural thing. It's like can we just start just have a keep the conversation going. Dr. Bob: And I think we are. I mean, that's part of what we're doing, right? That's why we have this ... That's why I have a life and death conversation. There are people like us who are not only comfortable talking about it but shine when we're talking about it. Because it's like being part of a club where you understand where this is coming from, where this conversation comes from. Not because we're morbid or want to talk about dying or don't love life, it's because we do love life. And we love life enough to say, "And one day this is going to end." And that's going to be okay too because that's We can maybe by doing this, by having these conversations and people listen to it and they think, "Wow, that's an interesting way of looking at it." Liz Fernandez: Broadening the perspectives because there is a sacredness to it. There is this deep sense of ... I mean, it pulls us into silence. I had the opportunity a couple of weeks ago to speak to a group of high school students who are interested in veterinarian medicine, and this is the topic we talked about. We talked about ... I just described the state that one gets into when one watches a sunset, and you're just completely present. That's kind of what meditation is, but it's also what happens when we are communing with death if you will. I mean, if we're present with someone who's dying, and that silence, it's just so full. There's so much life and love there. Dr. Bob: And sadness, right? There's loss, there's all of it, but it's the whole continuum. Liz Fernandez: It's all of it, exactly. And that's the other thing that I try and really focus on. It's the idea that it's not either or. You don't have to deny anything. You don't have to deny that you feel devastated or just horrible for whatever the experience is, and at the same time at some point, everyone who's ever gone through a grieving process knows that there is this ... All of a sudden flash will get in your head, and you'll start smiling and laughing when you're thinking of this person who you miss so dearly. You're feeling it all. That's what I mean I think it's important. That we allow ourselves to feel all of that. It's like clouds. They come, and they go, and your feelings and your emotions are going to be all over the map as part of the grieving process. One of the [inaudible 00:26:09], a friend of mine recently who passed away. She was very aware, and she lived so fully. I have another client whose dog is ... They called me a month ago thinking it was time and it's not yet, and they're just kind of writing with it. The idea to be able to live fully knowing very clearly because you have a terminal diagnosis, that your time is very limited, is ... I've seen only either in animals because they don't get all hung up, but in people, those that have really, really accepted the idea, they're older, and they can live like you said, very fully because of that. Dr. Bob: Yeah. For me that's a big part of my mission, and it sounds like of yours, is to create this comfort to allow the loved ones who are part of this experience to have it be as peaceful and potentially transformative as possible, so they can go on the rest of their lives feeling a sense of peace about it, feeling a sense that they did everything right, that they did the best possible in support of their loved one. Yes, it's important to make it comfortable for the person who's dying and to reduce the fear and to reduce the struggle, but so much the loved ones go on for years or decades having to carry that experience with them. It's a beautiful experience if it has been well explained and accepted, and the processing has been allowed to happen, it can be amazing what it opens up for them or allows them to experience. Which is why it's so it's so unfortunate and challenging one when people die suddenly. Or animals when death happens suddenly, and people haven't been able to prepare. You know what my solution for that is? Always be prepared. I think about that. I was in [inaudible 00:28:38] for 20 plus years. From early on in my career and in my adulthood, it became very clear to me how quickly things could change, how random things were, and so I guess I got comfortable with this idea that I could be just removed from life instantly or traumatized. I made a very conscious decision to tell people what I wanted them to know. To not leave things hanging. I'm almost to the point where my kids when I would leave the house they, "I know dad, I know you love me. I know. Okay." We have to hug again, and ... Liz Fernandez: They say when they're 13, right? Dr. Bob: Yeah, but I don't care. This is my thing. Liz Fernandez: They will appreciate it. Dr. Bob: Let's hope so. Liz Fernandez: No, I absolutely agree. That is hard when people leave us suddenly. It is wise to be really authentic in your feelings and leave things ... What makes your people know. I have always done the same. It's like, is there anything I need to say to anybody that I know? I try and do that. Dr. Bob: Well, who knows. Maybe this is just a reminder for somebody just to do it a little bit more. I feel like people who ... Well, anyone who has a pet certainly, or anybody who is interested in exploring the experiences in the mind and insights of someone like you who's around death on a daily bases would benefit from getting a hold of your book. We'll put a link to the book on our website, which is integratedmdcare.com. Once this episode airs, then it will be available. I thought it was wonderful. I gained a lot of insights out of it. I'm sure many other people have as well. Liz Fernandez: Well, great. I am so pleased to hear that and thank you for offering to put it on the website. Dr. Bob: Well, Liz, thank you again for taking the time out of your day. Liz Fernandez: And thank you. I really appreciate it. All right. Dr. Bob: All right. Thanks, everyone for tuning in. We'll talk to you soon.…

A Life & Death Conversation with Dr. Bob Uslander

1
What Death With Dignity Means to You and Your Loved Ones 35:44

πριν 7 years35:44

35:44

For decades Kathryn Tucker has been supporting people's rights to have a peaceful and dignified death. She's fought to protect the medical aid in dying laws. Listen to learn more about the End of Life Liberty Project. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact End of Life Liberty Project Dr. Bob: Katheryn Tucker is an attorney who's dedicated almost 30 years to supporting the right of individuals to have a peaceful and dignified death in a manner that's consistent with their values. In this work, and in this effort, she and I are very aligned. She helped initiate and protect the medical aid in dying laws in Oregon and Washington State as well as California, and has continued to be a fierce advocate for this right on a state and national level. Katheryn's a graduate of Georgetown University Law School, and she's currently serving as the executive director of the End Of Life Liberty Project, which is now based at the UCSF/UC Hastings Consortium on law, science and health policy. Katheryn is recognized as a national leader in spearheading creative and effective efforts to promote improved care for people who are seriously ill and dying. And on this episode, Katheryn is discussing her passion for supporting and protecting people's right to a peaceful and dignified death. As well as her views on the current laws in place in certain states that allow terminally ill people to access physician aid in dying or otherwise known as death with dignity. I personally found this conversation to be highly informative, a bit provocative and incredibly interesting. I hope you do too. Well. Katheryn, I am so happy to have this conversation with you. And I really appreciate you taking time. I know you're a busy lady, and involved in lots of important things. So, again, thanks for sharing your time and your expertise with my listeners. Kathryn Tucker: Well, thank you for having me. My pleasure. Dr. Bob: Yeah. I feel like we have so many different things that we could talk about that are important, but I'd like to start out, you're a passionate advocate for people having the most peaceful, dignified end of life as am I. We have we approach it from different angles, but with the same kind of general mission, which is to allow people to be self-determining and have more control. You've been doing this for a long time, how did you become such a passionate advocate for this? Kathryn Tucker: I started doing this work when I was a brand new lawyer back in 1990, and I was the outside counsel to the first initiative campaign in the country to put before voters the question of whether dying patients should be able to receive physician assistants in dying. So, my work started that year with that campaign. I did become passionate about empowering patients with information and choices as a civil liberty, and one of the most profoundly personal decisions a person can make in a lifetime. Dr. Bob: So, was this something that you ... Is this a direction that you chose at that time back in 1990, or did it just fall into your purview based on where you were working and what you were doing? Kathryn Tucker: I was a young lawyer in a big law firm in Seattle, Perkins Cooley that supported its lawyers taking on pro bono work. So, I actually was casting about for some public interest work and came upon the campaign, Washington Citizens For Death With Dignity, and just volunteered to provide some legal support. Right at that moment, the initiative was being drafted. So, I got involved with that drafting. Then we had a long campaign that involved the defense of the ballot title in court, that's the words that the voters will see when they go to make their vote and is very important to the outcome of the vote. So, we had litigation about that. We had litigation around false political advertising because some of the claims that were being made about what the law would allow were so outrageously wrong that we challenged those in court. So, it turned out to be a year and a half working to get this in front of the voters. And it very nearly passed even though it was quite a broad measure, much broader than what was passed in Oregon a few years later. So, my work on that then rolled forward into doing some work on the Oregon Effort in 1994. But also the orchestrating of two federal lawsuits that were seeking to have the federal courts and ultimately the United States Supreme Court recognize that the choice of a dying patient for a more peaceful death with physician assistants was an interest that should be protected by provisions of the United States Constitution. So, that work then got underway, and 25 years later I'm still doing this role. Dr. Bob: You're still doing that. Do you ever wonder what would have happened if you never were asked to participate in that back in 1990- Kathryn Tucker: It would probably have been a less interesting and satisfying career. I think that this question which is that the intersection of law, medicine, bioethics is very fascinating, and there are so many perspectives and so many complexities that 25 years later it says interesting as it was when I first got started. So, I'm very grateful and privileged to be able to do this work.Dr. Bob: I completely get that. This work has been part of my life only for the past couple of years since the end of Life Option Act passed in California, but it's so complex, and it makes me feel so, I guess, alive and invigorated to be able to provide such a high level of support at such an incredible and vulnerable and intense time in people's lives. Kathryn Tucker: Right, absolutely. Dr. Bob: So, I commend you, and you're partly responsible for what's transpired and what's now allowing people to have this kind of control and peace. And so I thank you for all the efforts that you've put in. I know that you've gone way above and beyond, you've created a nonprofit to additionally provide support. So, 25 years after you began, what are you currently focusing your energy and attention on right now? Kathryn Tucker: Well, one of the things that I constantly try to do is have some perspective on whether the efforts that we have been engaging to expand end of life liberty are actually achieving that. My current view is that while the work we did with the Oregon Death With Dignity [inaudible 00:07:50] which became the first statute to permitted and dying, enacted by voter initiative in 1994 by the Oregon voters. But then subsequently followed in many other states that have essentially what's referred to as the Oregon model. Which is a very heavy-handed government regulation of the practice of medicine with regard to aid and dying. That very heavy-handed government regulation may have been appropriate and necessary in 1994 when no state had an open practice of aid and dying. And there were many unanswered questions about how an open practice would impact patients and the practice of medicine. So, the Oregon enactment was designed first to actually be able to run the gauntlet of the political process. So, it needed to have a tremendous number of what are referred to as safeguards. You'll recall that the Oregon measure followed a failed attempt in Washington State in '91, and then a failed attempt in California in '92. So, by the time we were working in Oregon in '94, it was the kitchen sink approach to protection, regulation and safeguard so that the contentions of opponents that this would be dangerous could be effectively combated by showing how many safeguards, in fact, were in place. So, that's the backdrop of why the Oregon measure has the multitude of restrictions, requirements, and constraints that it does. Following Oregon's enactment. Other states adopted virtually the same but in some cases even more burdensome measures. Because at that point they could say well, the Oregon approach has worked well. So, everyone in this forum can feel comfortable voting for this. That's been effective. We saw Washington State and Vermont and Colorado and California and Hawaii adopt what are called Oregon style aid in dying measures. The problem is we're now more than 20 years later; we've got abundant data that shows who chooses aid in dying and why, and how it impacts patients in the practice of medicine. So, we now know a lot more than we knew in the early '90s. I think it's time to move away from the Oregon model because what we have also seen, and a multitude of studies are starting to report is that very heavy-handed government regulation comes at a tremendous cost. It creates barriers to patient access, which I know you've seen in your practice. And it creates tremendous burdens for physicians, which of course you're also aware of, which means few doctors are willing, and patients find difficulty finding doctors, and it's very problematic. So, the advocacy that I am embarking into now is really to move the practice of aid in dying into a standard of care approach, which is how all of medicine is practiced Dr. Bob: Awesome. You are really gifted at articulating all of that, and I think you did a great job of sharing how things got to be as they are today. Could you go a little deeper into what the heavy-handed government regulations you're referring to are? Kathryn Tucker: Sure, and I know you know them very well. Dr. Bob: Right? I want our audience to be aware of what we're talking about. Kathryn Tucker: Right. Well, so, on the eligibility side, and I don't really quibble with this because I think this is where our culture accepts the practice of aided dying. The patient must be diagnosed with six months or less life expectancy. They must be mentally competent. So, this is a decision that can only be made by a patient who has the ability to make their own informed medical decisions. Then the physician involvement is limited to providing the prescription for medication which the patient can self-administer. Those three bright lines, terminal illness, mental competency and patient self-administration, I think are what this culture accepts and are appropriate however the practice is conducted. Whether it's subject to statute, or standard of care. But then beyond that, what these regulatory statutes require is a tremendous amount of process and procedure. The patient must make multiple requests. It must be oral and written; they must be witnessed. They must have a minimum 15-day waiting period, although in the case of Hawaii that's now been extended to a minimum waiting period of 20 days. There's a tremendous amount of requirement for the collection and recording of data. And all of that is apparent to the practice of medicine. And most medical practices, even practices that result in the death of the patient and in fact, can be anticipated to precipitate the death of the patient are practice subject to standard of care. Which means the practice and procedures that govern are those that have been shown to be most efficacious and to deliver the best care to the patient. That is something that can evolve over time as clinicians discover what is most efficacious. So, it's an evolving standard, which best serves the patient. Here, just to bring it into a concrete example, I think we can all see that a 15-day mandatory state regulated waiting period causes a tremendous amount of suffering that standard of care would likely not impose. Clinicians free to determine whether there should be a waiting period would likely have it be much shorter. They might say to the patient, and Dr. Bob, you can say what you might say. You might turn to your patient and say, "Why don't you sleep on this, and we'll talk about it at our visit next Tuesday, or we'll talk about it tomorrow on the phone." It wouldn't be an additional 15 days. Because remember, patients come to this choice when the cumulative burden of suffering is so horrific that they feel that achieving death is their best option. So, they're in tremendous suffering when they're ready to make that choice, and then mandating waiting another 15 days, which many patients don't even live long enough is just cruel. Dr. Bob: Agreed. I completely agree. So, that does seem to be the most significant burdensome aspect. It's interesting, I hear about how often people have these multiple struggles trying to find a physician who will support them. Once they do find somebody, often it's because they're part of a hospital system, and they've been referred to so and so, or their own doctor has finally agreed to. But they also have these processes in place that mandatorily referral to an ethics counselor or a psychologist or psychiatrist even though they've never had any hint of mental illness throughout their entire life. But when people find me, and I know there are other physicians, Lonny Shavelson, and there are other physicians who are truly focused on providing support and honoring the patient and not primarily focused on protecting themselves and worrying about the liability or the hassle factor. The process really can be very streamlined. It doesn't feel in many cases for the patients that we care for, overly burdensome aside from the 15-day waiting period. So, I know we've had conversations about that- Kathryn Tucker: You are to be commended for your willingness to put up with so much procedure. Because doctors are busy people, and to create additional burdens on the clinician as these statutes do, well beyond what would be done for example, with the provision of palliative sedation, of course, is another medical choice that patients can make, and physicians can provide. Where death is the certain outcome after some considerable period of time, while the patient essentially dehydrates to death without any of that paperwork, without any of that reporting of data. It just happens within normal medical practice, which I think is where most physicians are comfortable practicing. That's a difficult enough job as it is without layering a tremendous additional level of process procedure and second-guessing on top. Dr. Bob: Yeah. I'm in agreement. What I've come to discover since becoming willing to participate and support patients and families is, I have concerns about this becoming a more ... About having a lot more physicians support participating. I want patients to have easier access, and not struggle to find the support that they need. But knowing how much time and energy goes into providing that support, the questions the patients have, the families have, the multiple, multiple phone calls and emails and communications as this is moving forward, I'm very concerned that most physicians in a traditional practice don't have the mechanism or don't have the wherewithal to provide that support. So, we would certainly have to be able to address that. Because otherwise, people are going to be struggling not having the information they need, not having the support they need. What are your thoughts about a process that can be put in place to ensure that that's happening? Kathryn Tucker: Well, I certainly think that clinicians who are willing to expand their practice to include aid in dying are going to be those that are highly motivated to respect their patients autonomy and to want to make sure that the patient is able to make the journey to death in the manner that is most consistent with their very personal preferences and values and beliefs. So, this is a fairly unusual subset of clinicians that will feel strongly about that. I think that they will take the responsibility of ensuring that the patient's request is voluntary and considered and enduring. I think they will take that all very seriously in a standard of care practice. Those clinicians will provide it. So, it will self-select. Certainly, not everyone is going to make this part of their practice. And we know that, for example, 20% of surveyed physicians in a New England Journal of Medicine survey were unwilling to discuss palliative sedation with their patients. That's an option that is clearly accepted by both law and medicine, and it should be available to patients in all 50 states. Yet, a fifth of doctors don't inform their patients about it. So, we know that physicians self-select what they're willing to provide in terms of care, and not all physicians would provide aid in dying. I'd like to see the model that we've been able to open the door to in Montana, considered by other states. And that's the one state that now has nearly a decade of aid in dying practice subject to standard of care, not subject to statute. I think that that model should be more closely looked at by other states and by advocates. Because it's much more normal in the practice of medicine than to have statutory governance. Dr. Bob: Yeah, it's an interesting model. Do you know how ... Of course, Montana is not a very populous state. Is there any data on the numbers of patients that are taking advantage of that right in Montana? Kathryn Tucker: Right. Well, you asked the question that we all ask, and the answer is no. Which is as it should be, because, absent a statute, clinicians are not required to collect and report data to a state agency, which then publishes the data for public review. So, we don't know the answer to that question. We do know anecdotally, from talking to clinicians who have embraced aid in dying in their medical practice, that some clinicians are practicing, and some have been very public about that, and have been willing to talk about their experience in other forums, including in lawsuits, trying to expand and have life, liberty and other states. So, we have the experience and the testimony of participating clinicians, but we don't have survey information. And in fact, I've been working with some researchers who do research into the practice of aid in dying in various states and published studies that you'd probably read about that practice. To encourage them to embark into the kind of surveying that would allow us to answer that question in Montana. It's really, they're excited to do it, it's a question of finding the funding to support their work, and we are also planning a symposium in the state of Montana to bring forward the experience there, and hopefully interested clinicians and patients and health policy researchers from around the country will come to that symposium to learn more about the Montana experience. Dr. Bob: Great. Do you know when that's going to be happening? Kathryn Tucker: We have just chosen the date. It will be September 6, 2019. Dr. Bob: Okay, so about a year plus in the planning. Sounds good. I'll put that on my calendar. Kathryn Tucker: Great. Dr. Bob: Another model that I find interesting, we were talking about the concern about physicians, if more physicians were participating in supporting aid in dying, do they have the wherewithal to truly support the patients? I did an interview with Robert John Keir in the Netherlands, and we talked about the model there, which of course allows euthanasia, in a much broader scope. But they allowed physicians to serve as an attending physician without any specialized training or background. But every patient is required to be seen by a specialist in this infield. There's a select number of physicians who are trained to be able to do the assessment and to provide the guidance and support. So, they provide support for not only the patient but for the physicians who have the relationship with the patient. So, what it does, is it assures that every patient has the adequate support that they would need, which would be an interesting model to be looking at here as well. Because one of the reasons that physicians, many physicians are reluctant is because they were concerned about the burden. They're concerned about the time involvement that they don't know enough to make sure that they're doing everything properly. So, what are your thoughts about that? Kathryn Tucker: Yeah, I don't favor having an extremely specialized small cadre of physicians who do this work. I much favor that the patient can turn to their own physician in the context of hopefully, a long-standing doctor, patient relationship, which can be very rich in terms of what the doctor knows about this individual, and their values, their beliefs, their preferences, and that that can inform the care the physician is able to provide the patient. Rather than having the patient come into contact at a difficult, vulnerable, burdened time of life to meet a new professional, and try to ramp that person up in explaining who they are, and why this is important to them. That's a complex dialogue that one would hope has gone over some period of time. And I think that's why it's so difficult Of course, to extrapolate cross-culturally. But I think it accounts for when you take a look at the data from the Netherlands where it is common that there are these long-standing doctor-patient relationships. And that that then allows the clinician to feel comfortable actually administering life-ending medication to the patient, which is not permitted in the States. But when you're in a situation with a very long-standing relationship, and there's a lot of clarity and understanding about the patient's wishes, the clinician then feels comfortable doing that, and the society feels comfortable supporting it. So, I tend to favor the physician assistants coming from a position with a long-standing relationship with the patient. Dr. Bob: I couldn't agree more. I absolutely believe that that is the ideal version and the ideal scenario. But realistically, I'm also aware of what life is like for physicians, and what that relationship has become. And unfortunately, it would be a long time, which I think many things would have to change for that to become reality. And I think we're both aware of that. That's the idealized version, which would be phenomenal, and it does happen at times. There are times when I have a physician who will contact me and say, my patient is requesting this, I want to support them, I don't really know what to do. It's my first time, and they request my support in guiding them to allow them to be the attending physician, and I may become the consulting physician, but providing additional guidance and support. Kathryn Tucker: That's exactly as it seems it should be, which is that's how standard of care and best practices are established, is clinicians who are new to a practice will look to peers for guidance. That's the beauty of standard of care governance is, hopefully, the more experienced clinician helps the beginner understand what best practices are. And those can, in a normal environment be allowed to evolve as the clinicians learn in providing care. So, I think that's the direction we should be moving, and much of my work now is oriented toward bringing that about. Dr. Bob: That's wonderful. I'm fully supportive of that aspect. I'd like to ... Again, we could speak for hours and just barely scratch the surface of all the things that we might want to talk about. And I am hopeful that you'll be willing to come back and do another podcast with me at some point in the future. But before we close, I just want to give you an opportunity to share whatever it is that's bubbling up for you, if there's something that you want to make sure that you articulate to the listeners, I'd like to give you that opportunity. Kathryn Tucker: Well, I will close by thanking you for offering me this opportunity to share some insight into the work of the End Of Life Liberty Project. And for any listeners who don't know the work with that project, you can find out more by visiting our website, which I hope you will do. We are based out of the UCSF/UC Hastings Consortium on law, science and health policy. But if you just Google End Of Life Liberty Project, you'll come to our website where there's information about our work. There's also a handy donate button. Because of course, this work is the work of a nonprofit and can only happen when donors support the work. So, if any of your listeners are in a position to support this work, we're always grateful and make tremendous mileage out of every dollar donated. You can also like us on Facebook, and get updates on the work of the project through following us on Facebook. Dr. Bob: Fantastic. And we'll make sure that the links for the sites and the Facebook page are on the website where we post all the podcasts. And that's at integratedmdcare.com/newsite1. Again, this was fascinating. I'm always fascinated and grateful to speak with you. I feel like we are in partnership in something incredibly meaningful. The patients and families that we get to care for are benefiting from your tireless efforts. And again, thank you for giving us some of your time and wisdom. Kathryn Tucker: Thanks for the opportunity Bob, and for all of your good work as well. So, congratulations to you.…

A Life & Death Conversation with Dr. Bob Uslander

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Where You Can Go To Deal With Death, Bill Palmer Ep. 23 34:02

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