I am thrilled and privileged to introduce today’s guest, Dr. Ira Byock. Ira is a leading palliative care physician, author, and public advocate for improving care through the end of life. He’s been involved in hospice and palliative care since 1978, and over the years has received too many awards and honors for me to name here. He has authored numerous peer-reviewed academic articles on the ethics and practice of care, and he’s the author of three award-winning books. In this interview, I draw on Ira’s first book, Dying Well, which has become a standard in the field of hospice and palliative care.
Here’s a peek at what you’ll hear from Ira, and I quote: “Most people believe that the fundamental nature of illness and dying is medical. And I would say that’s where we get things wrong to begin with. Obviously, people who are seriously ill and dying have medical issues that are incredibly important, but the fundamental nature of illness and dying is personal, emotional, social, interpersonal and spiritual.”
Dying Well
You can listen to the full conversation by clicking ‘play’ above, or on the following podcast platforms:
The following is a taste of my conversation with Ira.
Q: What are the goals of palliative care and hospice?
Ira: We treat pain when somebody is dying. But that’s hardly all we do. And it’s not actually the main reason why we’re needed. We have opportunities to attend to the personal, emotional, social, interpersonal spiritual needs of the patient.
Q: Why does confronting our brokenness or our losses allow us to become more whole?
Ira: By its very definition, being a whole person requires us to acknowledge that we’re imperfect, right? We are not called to be perfect. We are just human. And that’s enough. Part of being well within oneself for me and I think it’s true in general is the ability to accept that one is not perfect, to acknowledge our imperfections, to continue to hopefully work on our imperfections.
Q: Can we feel a sense of wellbeing as we’re dying?
Ira: People can’t imagine that there’s any potential for a sense of wellbeing while you’re dying. I mean, that seems almost disrespectful to even assert. It seems you know, impertinent, it seems outrageous, paradoxical at least. But the fact of the matter is human wellbeing and dying are not incompatible.
Q: You have said that it’s only a half truth that people die as they have lived?
Ira: Sometimes people change quite a lot during the months, weeks, and days that we would consider them to have been dying. They get over themselves in some regards. They let go of certain assumptions or expectations. Sometimes they come to accept some of the things that they have been unproud of or ashamed of. They accept their own imperfections. They forgive themselves.
Q: One of the issues that we’re exploring during this season about service is the dark underbelly we sometimes call a savior complex that contaminates even some of the best-intentioned service undertakings. How you have managed yourself in order to avoid this?
Ira: I’ve always approached this work, not as an expert. I think it’s almost absurd to consider oneself an expert in, you know, dying. My gosh, it’s laughable. I am a serious student of illness and dying and the human experience of illness and dying. And that has been my attitude all along, and still is, teach me more so that I can be a better doctor and a better teacher.
When asked if there’s one last thing she’d like our listeners to hear, Ira says, “It should be the next big thing in American culture, that this phenomenal realization that wellbeing is possible through the very end of life. That’s culture changing.”
About Ira:
Ira Byock, M.D., FAAHPM, is a leading palliative care physician, author, and public advocate for improving care through the end of life. He is Founder and Chief Medical Officer of the Institute for Human Caring of Providence St. Joseph Health. Dr. Byock is Active Professor Emeritus of Medicine and Community & Family Medicine at the Geisel School of Medicine at Dartmouth. He is Active Professor Emeritus of Medicine and Community & Family Medicine at the Geisel School of Medicine at Dartmouth. He served as Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire from 2003 through July 2013. Dr. Byock has been involved in hospice and palliative care since 1978. His research has contributed to conceptual frameworks for the lived experience of illness that encompasses a continuum from suffering to wellbeing; measures for subjective quality of life during illness; and effective life-completion counseling methods. From 1996 to 2006 he directed Promoting Excellence in End-of-Life Care, a national Robert Wood Johnson Foundation program that developed prototypes for concurrent palliative care of people with life-threatening conditions. He is a past president of the Academy of Hospice and Palliative Medicine. In addition to numerous academic publications, he has written op-eds for the New York Times, Washington Post and other national newspapers, and he has been featured on national broadcast programs including CBS 60 Minutes, Fox and Friends, PBS Newshour, NPR All Things Considered, and On Being.
Find Ira on Social Media:
https://irabyock.org/ (Website)
InstituteForHumanCaring.org (Website)
https://twitter.com/IraByock (Twitter)
https://twitter.com/providence (Twitter)
Ira’s Books:
The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life
The Four Things That Matter Most
Dying Well: The Prospect for Growth at the End of Life
Book Mentioned in the Interview:
Nothing Bad Between Us: A Missionary’s Daughter Finds Healing in Her Brokenness, by Marlena Fiol, which is now available for pre-order on Amazon.
About Marlena Fiol:
Marlena Fiol, PhD, is a globally recognized author, scholar and speaker. She is a spiritual seeker whose work explores the depths of who we are and what’s possible in our lives. Her significant body of publications on the topic, coupled with her own raw identity-changing experiences, makes her uniquely qualified to write about personal transformational change. She is also a certified tai chi instructor and freelance writer whose most recent work has appeared in numerous literary magazines and newsletters.
Find Marlena Fiol on Social Media:
Facebook
Twitter
Instagram
LinkedIn
Podcast Transcript:
Ira, welcome. Thank you so much for joining me today.
Ira: It’s a pleasure to be with you, Marlena
Marlena: So you write that you didn’t learn what you needed to know about the care of dying in medical school or in your residency training. What led to your calling to follow this path and where did you learn what you needed to know to do it well?
Ira: I think those are two separate questions. Thanks for asking them though. I’ll start with my ”calling.” I didn’t realize for a while. I was in residency and realized that the quality of care and the amount of attention given to people, patients who were felt to be dying was somehow significantly less than the time and attention we gave to everybody else. And that seemed not only peculiar and frankly, a lapse in kind of medical quality, but a social injustice. It was there that’s, you know, it was like, well, when did they stop mattering? Like, you know, what just happened? They’re just folks and they’re just dying. But, you know, they still have feelings and hopes and concerns and, you know, it seemed like something was seriously wrong that I had to respond to.
So I was called to action initially for a given patient and then it became a few patients. And then I realized, well, categorically, all that stuff that I had read, I had already read Kubler Ross and, you know, all that stuff is playing out in front of my eyes. How could this be happening? And so in taking action around specific patients, and I think in paying attention and being kind of brutally honest with myself, I realized that there was work that needed to be done here. But that wasn’t a career choice not initially, not for quite a while, frankly. It was simply being responsible in my own practice and then my own, you know, institution, which was my training institution at the time in Fresno, California.
When I realized that later on, at least 15 years later when I was writing ”Dying Well,” for instance, looking back on my experience as a physician in training, I realized that the real basics of what I needed to know came from what I learned from my parents, frankly, in their care of my grandmother, grandma Leah, who had a stroke, who needed full-time care. She went to a wonderful rehabilitation hospital Kessler’s Institute in Northern New Jersey, but after spending a couple of months at Kessler’s, she had, you know, gotten better enough to leave Kessler’s, but in most regards she was certainly not anywhere near independence of daily functions. And there was no question. She wasn’t going to a nursing home. She was coming home with us. And my mom and my father, her son-in-law cared for her in ways that frankly were amazing.
You know, I was like seven, or I don’t know, no more than nine at the time, but grandma Leah lived with us. We, you know, my mom shouldered the largest portion of the load as a woman, frankly, and her daughter, but my dad was also involved in even fairly intimate aspects of her care. And we all just embraced her as grandma and loved her. And so the care was intimate and had medical aspects and some technical aspects, but it was also unabashedly tender and loving.
Marlena: And it left a mark for you for life.
Ira: Yeah. It got embedded pretty deeply. You know, people, you know, people…I learned from their actions, not from their words, that my grandmother had inherent dignity, right? She could be made to feel undignified if she was treated in an undignified manner, but we weren’t as much giving her dignity. We were just acknowledging and honoring the dignity she already had. She was a whole person who had been diminished because of the stroke in her ability to communicate and to, you know, care for herself, but not in her personhood. She was, you know, she was magnificent, for heaven’s sake. She was grandma.
Marlena: Yeah. Yeah. My father was a medical missionary in Paraguay and he treated leprosy. And what you are saying almost brings tears to my eyes because he’s no longer with us, but those would have been his words about those patients. Don’t you dare call them lepers. They are dignified whole people with a disease called leprosy. Yeah. That’s correct.
Ira: Yeah. I mean that’s hardly a radical perspective or statement, but in today’s world kind of it is.
Marlena: Yeah, yeah, yeah. Unfortunately still in today’s world. Yeah. Just to be clear for our listeners, the objective of both hospice and palliative care is pain and symptom relief, but I think the prognosis and goals of care may be different. What differentiates the two?
Ira: So let me go back and say pain and symptom relief are only components of hospice and palliative care. They are, you know, they are the basics of medical responsibility in providing medical attention. I think the goals of palliative care and hospice are to improve comfort and quality of life of the people who are sick and those who love them. And that’s more accurate. But as your question kind of reflected, I think the general public and so many of my medical colleagues see hospice and palliative care as being, oh yeah. You’re the folks who treat pain when somebody is dying. Well, yeah, we kind of are, but that’s hardly all we do. And it’s not actually the main reason why we’re needed.
I mean, it is an enabling mechanism if we didn’t treat pain and this is what I saw way back in Fresno, if you don’t treat pain, people will suffer. If you treat it badly, people will suffer. If you don’t manage people’s biology, if you don’t manage both pain and their bowels, for instance at some point their lives will become all about the medical aspects of pain and their bowels and alleviating suffering. If you do just give them competent medical attention for their pain and their bowels and their skincare and their oral care and helping them eat and drink and eliminate and all that, then they have time and attention to devote to what’s most important in their lives, not just in their physiology. They can look at, we often say in palliative care it’s not just what’s a matter with you. It’s what matters most to you.
Marlena: Yeah. Yeah. So healing physical pain is clearly the responsibility of the physician, but I hear you saying that as a physician, it is also your responsibility to help patients heal their emotional pain?
Ira: Where I would start, Marlena, is to say that most physicians are taught and believe, and the general public goes along with it, that kind of the fundamental nature of illness and dying is medical. And I would say that’s where we get things wrong to begin with. That obviously people who are seriously ill and dying have medical issues that are incredibly important and are essential, but that the fundamental nature of illness and dying is personal. It is only partly medical. If one does not attend to the fundamental human needs of people, the biology, right, eating and drinking, shelter from the elements, elimination, skincare, all of that pain, then it becomes only medical. But as soon as you do that, then you have avail…people have available to them opportunities to attend to the personal. And within the realm of the personal, emotional, social, interpersonal, spiritual, people have the capacity to suffer absolutely.
But they also have the capacity for wellbeing. And that’s you said, what started this calling? That’s what drew me to the calling. I realized early on, I said I was really honest with myself throughout this. I kept thinking to myself, if somebody looks at me and if I say, Mr. Rodriguez, how are you doing today? And I’ve had the conversations with myself with Mr. Rodriguez. He knows that because of his widely metastatic cancer, he’s in a phase of life called dying, right? He knows it. I’ve been honest, gently, but honest with him. He has, you know, it’s his life for heaven sakes. If we discussed that and I come in one day to see him in the hospital, let’s say, and I say, ”Mr. Rodriguez, how are you doing today?” And he looks me in the face and says, ”Hi, Dr. Byock I’m. Well, thank you. How are you doing?” Right. So what the hell does that mean? You know, well.
When I first heard people say that, I thought, well, sure. You know, it’s the morphine, he’s feeling a little euphoric or, you know, it’s the prednisone we have him on, which will cause, you know, some euphoria. But after awhile, I realized, and it was just occasionally that I’d hear statements like that. I realized that no, maybe what these people are saying, they actually mean. Maybe they are feeling well within themselves despite the unwanted circumstances of knowing that they’re at the very end of their lives. And since we are more than our bodies, you know, and since Maslow and Erikson and Piaget all told us that human development was a lifelong process, maybe human potential persists even this period of life we call dying. That was what got me interested. That was my calling.
Marlena: Yeah. Yeah. And you write that paradoxically your patients, let me just bring up one example. So in the book, there are numerous case studies basically, and one of them is a guy named Douglas. And when he finally acknowledged his losses, this paradoxically allowed him to become more whole at the end. That it’s such a powerful statement and it does seem like it’s a paradox. My new book, ”Nothing Bad Between Us” describes exactly that, my journey to find healing in the most broken parts of myself. My question to you is this, would you describe for our listeners, why you believe confronting our brokenness or our losses, the way your patient Douglas did allows us to become more whole?
Ira: By its very definition, being a whole person requires us to acknowledge that we’re imperfect, right? We are not called to be perfect. We are just human. And that’s enough. Part of being well within oneself for me and I think it’s true in general is the ability to accept that one is not perfect, to acknowledge our imperfections, to continue to hopefully work on our imperfections. But, you know, you know, we’re gonna die imperfect, right? And one has to, I think be open and open-hearted and forgiving enough with one’s self to accept and love one’s self despite our imperfections.
If we can’t bring some sense of worthiness to ourselves, it’s very hard to feel the love of others. Other people can love you, but if you don’t feel worthy, then you kind of bat it away, you know. Oh, well sure. But if they knew that I, you know, that I’ve been a smoker, I brought this on myself, they wouldn’t say it. Well, no, I’ve sat with many, many people who never, ever smoked and still ended up dying. It’s okay. It’s okay. Have some mercy, right? We have to bring that mercy to ourselves. And part of what Douglas’s problem was that he was highly judgmental and you know, and he couldn’t love himself. And in ways his anger toward himself was directed at others as well.
Marlena: Yeah. Yeah. And you go back to Douglas in exploring this conceptual question. And that takes me to something that I found remarkable about your book and the stories in your book. And you writing that stories were really the only way you knew to fully explore this seeming paradox that we can become stronger and more whole as we are becoming weaker and as we are dying. Why is it so? Why are stories so powerful?
Ira: Stories are remarkable. So most people cannot imagine anything, well, first of all, they can’t imagine anything worse than someone they love dying or themselves dying. Those of us in health care and those of us, frankly, who’ve cared for seriously ill and dying people, both in and out of the hospital, realize actually there are things worse than dying. There’s dying badly in ways, dying in ways that you would not have wanted, in places that you would not have wanted to be had anybody asked you. But, you know, in the U.S. we usually, we just don’t ask. The other hand, people can’t imagine that there’s any potential for a sense of wellbeing while you’re dying. I mean, that seems almost disrespectful to even assert. It seems you know, impertinent, it seems outrageous, paradoxical at least.
But the fact of the matter is human wellbeing and dying are not incompatible. Not everybody certainly by no means achieves a sense of wellbeing or is, you know, is blessed with that as they’re dying, but darn it, it happens. And that was part of why I wrote ”Dying Well” was to say, look, this actually happens. ”Dying Well” was not a new agey woo-woo treatise about, oh, look, you can, you know, this is a romanticized view of dying. Hell no. It’s kinda…there’s stories in there, as you know, that are pretty gritty. But from an anthropological perspective, I learned as a young physician that people who were dying sometimes experienced a sense of wellbeing. And that story needed to be told, that knowledge needed to be reflected.
The reason I chose stories are, stories have this remarkable power of being able to expand the realm of what we consider to be possible. Expand our imagination and imagination is necessary. Having the idea that it’s possible that mom could still have some sense of wellbeing, could still experience a sense of being loved and maybe occasionally even experience a sense of joy even during her last weeks and days of life. If I have that as a possibility in my head, I’m far more likely to be able to work toward that happening than if I assume that because mom is dying, her life is already over, it’s all over. And the best we can hope for is she dies without suffering. That diminishes human potential artificially. We’ve done it to ourselves at that point.
Marlena: Yeah. And imagining that for our own lives as well. And so, yeah, I totally get why stories would be so important. You write that the adage that people die as they’ve lived is only half true. And that even at death, we can grow and change. But the two extreme cases in your book, and I’m not assuming that you have read your book recently, but that there are two extreme cases. One is Douglas and one is Mo. And so there’s Douglas. And I have a quote here from your book. ”Douglas, who’s angry blaze left no room for expressing the sadness and loss.” And then there’s Mo. I mean, I was so in love with Mo. She worked on herself and her relationships during her life and her dying seemed almost idyllic. So my question to you is, do you still believe the adage that we die as we’ve lived is only half true? It seems like how we live was pretty darn important for those two people.
Ira: Well, so yes, I do still believe it. Part of this is semantics perhaps because I think one lives through the end of life, right? Dying is a time of living. It is not synonymous with death. And I think that’s a problem in our language. Death is beyond life. It’s a lifeless state. I don’t know what a good death is. I don’t know if a rock is having a good day or not. It’s lifeless, right? I don’t know anything about corpse’s experience. And I’m not trying to denigrate that, but I just don’t know. And I’ve never met anybody who convinced me they knew anything about death. I know a bit about dying because it’s part of living, because I’ve hung out with people who are dying for a long time and have always encouraged them to share with me their experience, their perspective.
Marlena: Yeah. That’s why you make that important distinction between dying well rather than dying a good death, right?
Ira: Right. Right, because well is not…that word well is not just an adverb, though that’s what mostly people hear it as, and it’s legit. It is an adverb modifying or describing the verb to die. But it’s more provocative, and I think socially culturally constructive, to hear the word well in dying well as an adjective. Well describing the person who is dying. You know, Joe died well. If I mean, that as Joe had experienced a sense of wellbeing during the time he was dying, it’s remarkable. That’s kind of culture-changing, right?
So, you know what I mean by that is it’s only a half truth that people die as they have lived. Sometimes people change quite a lot during the months, weeks, and days that we would consider them to have been dying. They get over themselves in some regards. They let go of certain assumptions or expectations. Sometimes they come to accept some of the things that they have been unproud of or ashamed of. They accept their own imperfections. They forgive themselves. Sometimes people reconcile with, you know, their former spouse or the child that they’ve been at odds with for years or a sibling sister or brother that they’d been fighting with. And in so doing, their living experience changes in ways that are deeply meaningful to them and maybe to others as well.
And so, you know, they didn’t die as they lived, they actually grew. There was a period of living that we would say they were dying. That’s so important because as clinicians and as a health system, if we assume people will die as they have lived, it becomes the basis of therapeutic nihilism. Treat their pain, deal with their bowels, and then leave them alone, right? The hell else are you gonna do, right? Well, my answer to that is there’s a lot that we can help them do. We can help them to look at what is undone in their lives, to look at where there are places to heal broken relationships, hurt feelings. There’s a chance to reconcile, to, you know, review their lives, to perhaps deepen their sense of meaning about their own lives, a chance to celebrate and honor, you know, their relationships with others. All of that stuff that I just rattled off, and it’s hardly an exhaustive list, I would put in the realm of the tasks of human development that are part of the structure of human potential and growth during the phase of life of dying.
Marlena: Yeah. This reminds me so much of the challenging end of life for my mother. She was a devout Mennonite missionary, and she spent her entire life in service and maintaining good relationships with those around her. And according to what you referred to as those tasks that you were just talking about relevant to the end of life, I would’ve predicted a peaceful and easy death, but that was sadly not the case. Obviously, you can’t speak to my mother’s particular journey, but I was wondering in general, is it ever possible really to predict how well someone will die or even can I possibly predict how well I will die?
Ira: You can stack the cards in your favor, but no, there’s no assurances here. Certainly not. A lot…
Marlena: I can’t ask the five relationship completion question, or I can’t make the statements. I forgive you me, thank you, I love you, goodbye. And is that stacking the deck? Is that what you’re saying?
Ira: Absolutely. Yes. So all of that, those things that I would consider to be the tasks of life completion can be accomplished prior to one’s biological death, right? You don’t, you know, in this realm of completing relationships, which are, you know, in the most generic form saying, please forgive me, I forgive you, thank you, and I love you, right? You don’t have to be dying for those statements to have.
Marlena: Ideally not.
Ira: You just have to be mortal, right? You know, that’s enough and you don’t have to say goodbye right then. My second book frankly, is called ”The Four Things that Matter Most.” And I used those five statements, please forgive me, I forgive you, thank you, and I love you, the last one being and goodbye. Well, it turns out you don’t have to be dying or to even say goodbye. If you can say, if you can feel like you have offered, asked for forgiveness, offered forgiveness, expressed gratitude and love, even if you were to die suddenly, there would be less important things left unsaid.
And frankly, Marlena, you may not or may not know this, but that’s what happened to me, frankly. My, dear mom, Ruth Byock, who, you know, was a wonderful mom but we had our challenges during life, she never lived to read… to see “The Four Things that Matter Most” come out in print. But she read the galleys of the book. And this was the fall of 2003. And because I had completed the manuscript, I knew I had to have these conversations with my mom, because we had, you know, challenges over the years. And I started with please forgive me, because man, I made her life miserable when I was, you know, a late adolescent and young adult. And I knew it and I really was apologetic and I wanted her to know it. And, you know, I forgave her because, you know, we laugh about, you know, Jewish mothers, but you know, [inaudible 00:29:25] and a real pain in the neck and she could be hard to live with.
Marlena: I read this. So my father and I had a very broken relationship for a long time. And the title of my book, ”Nothing Bad between Us”, actually, those words in low German, which is our native tongue are Nichts Schlimmes zwischen uns. And those were the words that we said to each other at every goodbye for the last couple of decades of his life. And they really encapsulate. And I never thought about that until this moment, but they encapsulate all of that. I forgive you, forgive me, thank you and I love you, Nichts Schlimmes zwischen uns. And to be able to say those words to a loved one, especially when it’s been a broken relationship is so powerful before the goodbye.
Ira: My mom died suddenly. She had been well. She died in a car. Had a heart attack on Thanksgiving Eve, 2003. And I miss her to this day. Oh God, there’s so many things I’d like to catch her up on. And she Cavell was as they say, she would just Cavell to know me and my wife and her two granddaughters. And, oh my gosh, there’s so much, but I am genuinely comforted in knowing that there was nothing critically important left unsaid between my mom and me, because we did it intentionally. So yes, you can stack that in your favor.
Marlena: Yeah. This is a real crossing of paths. My father died November 8th of 2003. Very interesting. Okay. So one of the things, just to change topics a bit here, and I really appreciate your sharing the personal story as well, Ira. Thank you. One of the issues that we’re exploring during this season about service is the dark underbelly, it’s sometimes we sometimes… something we sometimes call a savior complex that contaminates even some of the best intentioned service undertakings. It seems to me, as I read your book and I read your stories, that being of service in the really scary and vulnerable space of dying would be especially ripe for this kind of contamination. So I’m wondering how you have managed yourself in order to avoid this thing we call a savior complex.
Ira: You’re gonna have to dialogue with me and make sure that I don’t inadvertently dodge that. In one sense, it’s a little bit easy for me because all my patients die anyway.
Marlena: Yeah. But before death, when it’s in the dying phase.
Ira: Yeah. So I don’t know. I think I know what you mean. And when…
Marlena: Okay. Ira, let me jump in here. I asked you this question because I was so impressed, numerous times in the book, when you write about wanting to learn, as you’re offering help at the end, wanting to learn. And the humility you talk about skilled, I think you’d call it skilled listening. And I read those as being very important in managing to not come in as the great savior swoop in to fix it all at the end. Or to…you were there to learn, explore, and listen. That’s why I asked the question.
Ira: Well, my attitude, I don’t know, from where, but I’ve always approached this, not as an expert. I think it’s almost absurd to consider oneself an expert in, you know, dying. My gosh, it’s laughable. I am a serious student of illness and dying and the human experience of illness and dying. And that has been my attitude all along, and still is, teach me more so that I can be a better doctor and a better teacher.
Marlena: Yes, yes. And that’s really reflective in your writing.
Ira: When I was a fellowship director for quite a while at Dartmouth, so I was directing, you know, I was teaching resident physician in training residents and fellows, so specialists seeking training in hospice and palliative medicine. And one of my well, a couple of my sort of mantras to them are number one, it’s not about us. This is, for this profession, it’s always about them. It’s not about us number one. And number two is we’re just here to serve. And that’s important because some people just don’t want what we have to offer. They don’t want to see us. And while that kind of hurts and sometimes it drives us crazy because there’s so much we can offer to alleviate, to ease people’s way and to alleviate their suffering and to help them and support their families. And we’ve been down this path for, with so many hundreds of patients, we know kind of what the future looks like a little bit, not in the granular specifics, but we know kind of where you’re going in this. And we would love to be able to kind of accompany you and just ease your way a little bit.
But at the end of the day, if they don’t wanna see us, it’s not about us. And we’re just here to serve. And so, okay. [inaudible 00:35:26] be okay. And so, and staff support stuff and in teaching and mentoring young clinicians, I say that a lot, like at end of the day, we’re here to serve and people may or may not want what we have to offer. That’s gonna have to be okay.
Marlena: Yeah. I’d like to talk a bit about hope. I thought a lot about hope when I was reading your book. So when your father was dying, he and his physician saw your attempts to raise end of life issues as kind of almost an assault on hope. And I think your doctor said, or your dad’s doctor said something to you about, well, if you practice enough Ira, you’re gonna understand that you can’t destroy a patient’s hope. And this whole issue of hope seems really complex and messy to me. So there’s the patient named Mike in one of your case, in one of your stories. And he held out hope for his son when really the medical community believed it was the end. And it was a good thing because his son, at least for a while improved. But then there was Terry. So she refused to accept her illness. And she tried every life-prolonging options that was possible. And you describe that she paid the price of terrible distress. So here’s my question.
Ira: It was about her. Terry is one of the toughest cases one can have, Terry was a young, for our listeners, Terry was a young mother who had a terrible cancer. And she never gave up fighting to live longer. She took every treatment possible. And in many ways she died suffering. It drove me crazy to see that. But in all honesty, Marlena, that was her choice. And in a sense and this, I don’t wanna sound too new agey here either, but it was her choice to fight to the end. And to a certain extent, her sense of wellbeing or personal integrity required that she was gonna keep trying for the sake of her children and being a mother, even if she suffered in the process. You know, that was something that was really hard for me, but I had to come to ultimately accept
Marlena: I just, I find that it’s kind of a fine line between reasonable hope and what I’m almost would think is wishful thinking and how, how at the, at the end do you distinguish between those?
Ira: You know, if we only hope for, to beat this illness, to not have it end our lives, to, you know, continue to live, at some point, we all become hopeless because, you know, modern medicine has yet to make even one person immortal. So, you can go to the Mayo Clinic, you can go to Sloan Kettering, you can go to the Karolinska Institute, you can go any darn place you want, and they have yet to make one person immortal. So at some point in time, more intensive treatments for your condition is not the best care for you or your wellbeing, right? I’m not saying this in any way as a nihilist. You know, I was boarded in emergency medicine. I love saving people’s lives. I love technology that I am not in any tension, but it is if you ignore the reality that we are mortal, then at some point, hope always becomes false hope.
Marlena: Yeah, absolutely.
Ira: We can hope, however, going back to dying well, we can hope for a sense of wellbeing even as we die. That is a legitimate thing to wish for and to build toward and to hope for. To be able to die and to die gently so that we are leaving this life in a way that we sort of dissolve from life with our affairs complete, being right within ourselves, right with the people we love, right with our God or if you prefer with nature, that is achievable. That’s what I hope for. And that’s what I hope for the people who are my patients.
Marlena: Yeah. Yeah. Good point. Ira, many of us are, I’m now going to the fears that we have about being a burden. I know that my husband and I have conversations a lot about not wanting to be a burden to loved ones at the end of our lives. I have a couple of questions about this. First of all, you write that really we’re allowing, we’re giving a final gift to loved ones by allowing ourselves to be cared for. Is this necessarily always true that it’s a gift to our loved ones?
Ira: Gosh. Well, it is not all gifts come wrapped in bows and not every gift is accepted. What I mean by that is, you know, people say, Oh, I don’t wanna be a burden, you know, to my family. And sometimes I’ll look them in the face and say, ”Well, too late, you already are.” You know, but you know, were your children, when they were infants and toddlers, where they a burden to you? And if you say no, I’ll say, ”Well, actually, yeah, they were.” I can, you know, if I interviewed them or I took you back, you know, young children are really tough.
And not only are there poopy diapers to change and all that, but you don’t sleep some nights. They, you know, when they’re older, they get in trouble. They are a burden, but they are a burden that we accept and embrace it because it’s part of parenthood, because we love them, and because we’re a family. And family, you know, are people who are intricately connected, inextricably connected, right? It turns out that at the far end of life, we are also burdens to our loved ones. And it’s because it’s part of family, that’s part of, you know, that shared sense of life that is part of healthy human living. But a burden, you damn right it’s a burden.
Marlena: So the word gift, my native language is German. The word gift in German means poison.
Ira: I saw that. That’s amazing.
Marlena: So my second question around that is a lot more challenging for me, personally. In your experience, would you say that our fear of becoming a burden, or let me just say my fear of becoming a burden, may be masking a deeper fear that I’m terrified of showing that much naked vulnerability to my loved ones.
Ira: Yes. Yes. And, you know, we are not infants who innately feel at home in mother’s arms. We are people who have lived independent lives and are fiercely proud of our independence. And so being forced to confront our inherent human dependence and interdependence sucks. It just sucks. But it is part of the human condition that we are interdependent with one another. And the good part of that gift is for many families, not all, and again, I’m not seeing this through rose-colored glasses. But for many families, the ability to express their love and honoring reverence to a, you know, mother or father and family through the physical act of caring, even the intimate, smelly, messy parts of caring is in fact, an important part of their own human development and wellbeing that we are well, the human developed, human wellbeing requires human connectedness. And so that physical dependence, frankly, is part of what evokes that loving expressions through physical care.
Marlena: Yeah. Well said. Ira, you’ve been asked for your opinion about physician assisted suicide, and you also write about starvation and sedation as legitimate strategies under some circumstances to manage pain. Would you comment on the line between these legitimate strategies that inevitably lead to death and euthanasia and how do you manage that line?
Ira: Respectfully. Supporting people to be as comfortable as possible and to leave life gently is well within the realm of the physicians practice, hospice and palliative care. And that may require strong doses of pain medications that ultimately sedate a patient so that they drift out of life gently. That is still importantly different than acting with the intention of ending a patient’s life. And that seems, excuse me. That seems to many people like I’m splitting hairs. Like it’s a very fine line. Well, maybe, but if so, it is a very bright fine line.
Having cared for many, many, many people in their dying, providing, you know, morphine and ativan and those sorts of drugs to the dosed to alleviate their suffering is very different than injecting potassium chloride to stop their heart. One is the ladder for me, feels like an arrogant act that goes beyond the proper boundaries of the practice of medicine of what being a doctor is, right? It is something else. I don’t think it’s part of medical practice. Whether or not you think it should be legal or is legitimate, it feels beyond the bounds of practice. Out of scope as some of my colleagues like to say. And so that’s where I draw the line, but one can accompany someone through the very end of life, committed to bringing every skill and technology possible to alleviate their distress so that they can live as fully as possible and then die as gently as possible. That’s what we do in hospice and palliative care.
Marlena: Yeah. I like the bright fine line. That’s lovely. You’ve repeatedly been asked, how can you do what you do? And you’ve said, ”How could I do anything else?” But I know that the burnout rate for hospice workers is unusually high. I had a sister and brother-in-law who worked in hospice for years and it’s taxing. Would you talk a bit about how caregivers of end of life patients can care for themselves in order to not crumble under the weight?
Ira: This is hard work emotionally, no question. We do it out of love for other people. We do it out of the commitment to serve other people. Ultimately, again, it’s not about us. We are just here to serve. The people we meet will eventually die because they’re mortal human beings. And from my perspective, burnout in my field is not directly related to the repeated experience of caring for people as they are dying, as strange as that may seem. What it mostly is relates to is our frustrations about not being able to care as well for people who are dying as we want to and hope to are the gaps.
Marlena: Yeah. That’s an important distinction. Yeah.
Ira: It’s very important because I, around the country, I’m seeing palliative care and hospice programs that are insufficiently staffed, that have workloads that are untenable, that because of the financial barriers are unable to get the equipment they need into a patient’s home, or to make the transition to a place where people can live fully that who have to, you know, ultimately, they watch again and again, patients being sent to nursing homes that they know by direct experience are insufficiently staffed and resourced to care well for people. And that frustration and that sense of, you know, that’s not okay, that’s what causes burnout far more than the recurrent sadness of getting close to people and then seeing them die.
In hospice care, having people repeatedly referred to us within hours of death, that causes burnout. But the sadness, no. That causes fatigue and people. That’s why we create weekends off and vacations. That’s not directly as much a source of burnout as the institutional endemic barriers to providing the best care we possibly can.
Marlena: Yeah. Yeah. Ira, if there were one last thing that you’d like our listeners to hear, something we have not covered yet, what would it be?
Ira: I wanna just go back and emphasize from a perspective of advocacy for oneself and others that human potential persists through the very end of life. That there are many more people than one would expect do retain the potential for, to experience a sense of wellbeing during the last months, weeks, and days of life, and so do their families who, the people who love them. And so that really from my perspective is, it should be the next big thing in American culture, that this phenomenal realization that wellbeing is possible through the very end of life. That’s culture-changing. It’s a paradigm shift, but it’s based in anthropology, not in some, you know, pop psychology.
So as clinicians, as social advocates, but also as patients, you know, people who are mortal ourselves and family members of people who ultimately become ill and die, we should stay focused on this notion that people do have the capacity to grow and to experience human wellbeing through the very end of life.
Marlena: I hate it that our time is up. This has been a rich and meaningful conversation. Ira, thank you so much for taking the time to speak with me.
Ira: It’s such a pleasure to speak to you. Thank you for asking.
As an older man who had bypass surgery and a diagnosis of cancer, I continue to rely on the medical community to aid my process of living. However, I recognize that dying is, in the words of Dr. Ira Byock, “personal, emotional, social, interpersonal and spiritual.”