EP. 9: LESSONS ON MORTALITY AND DYING WELL

WITH IRA BYOCK

May 4

WITH IRA BYOCK, MD

A pioneer in palliative care and acclaimed writer discusses what dying well can teach us about living well.

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Episode Summary

Dr. Ira Byock is a leading figure in hospice and palliative medicine, having developed many practices and tools that now define the specialty. For him, this profession is a continual pursuit of balancing the scientific and human aspects of medical care, to address patient well-being in a way that transcends conventional concepts of disease and illness. In this episode, Dr. Byock joins us to discuss how palliative medicine developed into what it is today, how viewing death as a normal part of human living can allow patients to create meaning at the end of life, and what all clinicians can learn from palliative care about good doctoring.

Dr. Ira Byock is a leading advocate for improving care at the end of life and a pioneer in palliative medicine. He is a past president of the American Academy of Hospice and Palliative Medicine, which he helped create, is currently an emeritus professor of medicine at Geisel School of Medicine, and previously directed the Palliative Medicine Program at Dartmouth University's Medical Center. In addition, Dr. Byock is the author of Dying Well, The Four Things That Matter Most, and the Best Care Possible. These three books have become standards in the field of hospice and palliative care and have transformed how clinicians everywhere think about caring for the dying.
How a college music reviewer came to write for The New York Times - 1:41
• Dr. Byock’s early work in family and rural medicine and the moral crisis that awakened him to the need for palliative medicine - 1:51
• Dr. Byock’s experiences in pioneering the nascent field of palliative medicine - 7:53
• Combating the prevailing notion that medicine is only about treating injuries and curing illnesses - 11:16
• A story about a dying patient and the extra mile Dr. Byock went for her, which solidified his belief in the power of palliative care - 17:05
• Reimagining our relationship to death, both from the clinician’s and patient’s perspectives - 24:10
• The Four Things that Matter Most - 31:19
• Lessons learned from patients experiencing the end of their lives - 35:52
• Dr. Byock’s advice to young medical professionals and students - 39:31
Henry Bair: [00:00:01] Hi. I'm Henry Bair.

Tyler Johnson: [00:00:03] And I'm Tyler Johnson.

Henry Bair: [00:00:04] And you're listening to The Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build health care institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?

Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across health care, from doctors and nurses to patients and health care executives. Those who have collected a career's worth of hard earned wisdom, probing the moral heart that beats at the core of medicine. We will hear stories that are, by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.

Henry Bair: [00:01:03] It's our honor to be joined today by Dr. Ira Byock, a leading advocate for improving care at the end of life and a pioneer in palliative medicine since the 1970s. Dr. Byock is a past president of the American Academy of Hospice and Palliative Medicine, which he helped create. He's an emeritus professor of medicine at Geisel School of Medicine and previously directed the Palliative Medicine Program at Dartmouth University's Medical Center. In addition, Dr. Byock is the author of Dying Well The Four Things That Matter Most and the Best Care Possible. These three books have become standards in the field of hospice and palliative care and have transformed how clinicians everywhere think about caring for the dying. Dr. Byock, thank you for being here.

Ira Byock: [00:01:46] Thanks for having me, first of all. And you can call me Ira. I go by Ira.

Henry Bair: [00:01:51] So, Ira, even though you're one of the most well known palliative care physicians, you actually started your career in emergency and rural medicine. Can you tell us how you got started in those fields and why you eventually transitioned to palliative medicine?

Ira Byock: [00:02:05] I went to medical school pointing to rural family medicine. I wanted to do cradle to grave family medicine. I did a residency, very challenging residency in Fresno, California, that was focused on rural family medicine. During my residency while enjoying, frankly, the training that I was getting, kind of being a specialist in generalists in general medicine. I realized that this academic safety net hospital took really, really good care of people, and yet there was some kind of something within the culture and the systems where we tended to give far less attention to people who were acknowledged to be dying. I couldn't quite shake that. That seemed odd that they were the sickest patients in our hospitals, whereas where I usually saw them, they were at the time, and this is 1978, 79, that kind of period of time, my first year in residency, they were often literally down the hall, you know, they didn't get our attention on rounds. They didn't certainly didn't get the academic attention. And that seemed like a lapse in our commitment to excellence, but also sort of a social justice issue, like when did they stop mattering? And I remember just being with people that struck me as this is as a problem that didn't need to exist, that that these people could have been cared for much better.

Ira Byock: [00:03:41] And I could talk about some of the systemic challenges that I was facing that that they were facing, really. And I was starting to observe I got really involved in this when there was a gentleman that we cared for on the surgical service, I was rotating as a family practice resident. I rotated through several times during my residency through an inpatient surgical practice, and there was a gentleman I don't remember as his last name who had metastatic colon cancer, who had arrived with a bowel obstruction, who had had a resection, who now was kind of deicing his wound because of internal infection. And we were packing and unpacking his wound several times a day. And, and I was told after rounds by a discharge. Mr.. I'll call him. Mr.. Jones you can send them home. And I said, send them home. What the hell am I going to do with them? What are they going to do with them? You know, and he and the attending or my senior resident said, I don't know, just, you know, he doesn't need to be here, find a find someplace to discharge him. And I went and I and I met with him and his the patient and his wife and looked at their care needs and and went back to the nursing station where I was going to write my note and physically accomplish the discharge.

Ira Byock: [00:04:59] And I had kind of a moral crisis. I had no idea what to do with this gentleman, and I couldn't figure out a discharge plan that I could morally accept. I ultimately called up the only hospice program in town, which was definitely not at the safety net hospital. It was across town at St Agnes Medical Center, a Catholic hospital, but well financed, beautiful hospital. And they had a they had a fledgling hospice program. And to their credit, they they took the discharge and said, yes, we'll come by and see them tomorrow and we'll we'll make this happen. And they got him home to what I believe was a trailer with his wife. And they arranged nursing care and taught them how to manage this wound. Within a couple of days, though, the nurse coordinator for that hospice of Saint Agnes, her name was Sally Medrano, and she came by to meet me at Valley Medical Center, the the county hospital, and partly to find out what kind of animal was in discharging patients from the county hospital to to us to basically encourage me for doing it, but also to make sure that that I wasn't going to open the floodgates for a conduit of our patients to to their hospice program.

Ira Byock: [00:06:27] And she kind of gently suggested that, you know, you could you could organize something like this here. Understand, I was a first year resident, but it did get me thinking that, gee, we could at least maybe make sure that when we discharge patients to the county home health nurses, that they didn't get completely lost. That maybe there'd be somebody for the nurses to call to get their prescriptions refilled. I was already aggregating my experience because I was. On the other hand, when I rotated through the emergency department, I'd be meeting patients who sometimes had waited three or four or more hours simply to get their Tylenol with codeine refilled, which was what we were using those days. Or or I remember admitting one person who was being admitted for rule out bowel obstruction, but when you took a careful history, had simply been constipated for the last ten days and now appeared like they were having a bowel obstruction. And I thought, well, this is this was like totally avoidable. What the hell are we doing? Out of that grew a fledgling little hospice program. That's where I began. This was not a plan. This was a response to flagrant unmet need in my line of sight.

Henry Bair: [00:07:53] One of the most fascinating things when I consider palliative medicine is just how young of a specialty it is. It was only formally recognized by the American Board of Medical Specialties in 2006, I believe. That's right. And yet you were working in palliative medicine decades before the specialty was codified in any sense of the word. So I'm curious, can you speak to what that experience was like working in such uncharted territories when few other clinicians were thinking about patients the way you were thinking about them? What challenges did you encounter? Did you meet any skepticism about what you were trying to do?

Ira Byock: [00:08:31] Yeah. All of that. You know, this narrative looks organized when you look back. My experience was that I was always working to solve problems at a short focal length, individual patient problems or my hospital's problems, or later on my problems in my community where there was unmet need and discontinuities in care and over treatments without missing the forest for the trees and treating people's disease without treating them for myself as a young professional. You know, it was confusing and I can't say that I had a lot of confidence. I wasn't getting a lot of positive feedback from my academic colleagues, from other clinicians or other physicians in town. It was you know, it was confusing. And I got through it all, frankly, to tell you the truth, by acting as if I had confidence. I knew intellectually, I knew what was right. Ethically, I understood it. I think all of us who helped evolve the field of palliative care also studied clinical ethics a lot. I mean, I didn't do it formally, but I, I spent a lot of time at ethics conferences and reading ethics texts. And and the reason I came to be acknowledged in the field was I was always writing some article about some aspect of the ethics and practice of caring for people who are dying. I remember once, just after my residency, I was working half time in emergency medicine turned out because of my rural family medicine training.

Ira Byock: [00:10:03] I was very well qualified to practice emergency medicine and I later went on and got boards in emergency medicine. But I was doing emergency medicine at Fresno Community Hospital, a private hospital, and about half time and about half of the time I was trying to stand up a new nonprofit which grew a hospice program which grew out of the Esperanza Care Cooperative that we developed as a fledgling coalition model hospice within Valley Medical Center. I went to an emergency medicine conference, and during the first evening at the kind of the wine reception, I was standing with three other colleagues from around the country, and we're sort of just introducing ourselves to one another. And they asked me as the most junior person, what are you doing and where are you working? And I said, Oh, I'm working half time for an emergency medicine. And about half of the time I'm trying to get this board of directors of this nonprofit off the ground for a hospice program. I'm doing hospice work, and one of the docs quite literally took a step back and made a face like we'll just gotten a mouthful of spoiled milk and said, Why would a doctor do that? It seemed unseemly to this doc.

Henry Bair: [00:11:16] Why do you think that was? Was there some sort of. Difference in understanding of what hospice entailed, or was it just a pervasive cultural mindset that stood in the way of them appreciating what hospice had to offer?

Ira Byock: [00:11:31] I think it was a misunderstanding of what medicine entails, what real doctoring entails. There is this persistent misperception, and you can see it still today, though today it's kind of dissolving. Thankfully, it's at least getting less strong. But there was this dominant assumption that the that medicine was about diagnosing and treating disease, repairing injuries and curing disease. And there was far less attention or even kind of legitimacy to caring for people who happen to have those diagnoses. Nowadays, we talk about whole person care. In 1979, 1980, that that era that seemed woo woo, that was kind of maybe new agey with crystals and dream catchers. And yet I was coming from a place of like, no, this is like anthropology. This is part of people's lives. But the leadership in hospice came from nursing, and that was also part of it. It was it was considered women's work. I was really one of the only docs. I mean, there were probably as back that far there was, I wouldn't guess more than 100 docs across the country who were in some way involved with hospice and what we would now call palliative care. That term didn't exist yet, and most of the leadership was coming from nursing and a bit from social work.

Tyler Johnson: [00:12:59] So Ira, let me give a little bit of background briefly about the relationship between oncology and palliative care. And then I want to ask you what maybe a slightly provocative question. So for those who aren't aware, I think the relationship between oncology and palliative care is probably closer than between any other medical subspecialty and palliative care. We have a very close working relationship with palliative care doctors, and in many places, palliative care doctors are embedded with oncology teams. And they and they, at least in an ideal world, sort of work together seamlessly. And usually when I'm talking to my patients about why I want to involve a palliative care doctor in their care, I'll say, well, they have kind of two buckets of things that they do. They help with symptom management, and then they also help with this harder to articulate piece about having complicated discussions and understanding your goals and values and etc., etc.. So the thing that I want to ask you, Ira, is do you think that palliative care is truly a distinct subspecialty, or do you think palliative care is just doctors who care enough to do well, the things that all doctors should be doing well, but that the rest of us maybe don't take the time or have the skills to do as well as we should be.

Ira Byock: [00:14:13] It's both. There is a subspecialty veneer here that is worth preserving and continuing to grow and evolve. A large proportion of palliative care is just good general medicine. It is the same family practice that I was taught early on. It is understanding what the experience of illness is from the patient's perspective and their families perspective, the impacts on their current life, on, but also on their hopes and fears and future plans. It is very much at this point making sure that what we do is well aligned with what is achievable physically and functionally and consistent with people's personal values and priorities. That goal alignment is essential and it's part of the Etc's I live in the etc's that you were talking about those difficult conversations and the Etc's I would say, by the way, and this is part of my own brand of palliative care that I wish was more prevalent, but I'll make a pitch for here, and that is that that we care for people with advanced illness, many of whom, but by no means all of whom, go on to to die during our care. We see this as illness and certainly advanced illness as potential for enormous suffering, but also a normal part of human life.

Ira Byock: [00:15:41] We do a disservice if we see palliative care simply as symptom management and making sure we're having shared decision making and goal alignment. Those two are essential, but the full potential of palliative care comes in reintegrating illness and dying within within the life cycle of an individual and in the context of the family, meaning those who love that person. So I'm coming around to answer your question, much of it shared decision making, listening more than you talk when you're asking a patient how. The experiences of having this diagnosis is helping them through management of symptoms, through their course of an illness that still feels pretty much like good general health care to me. Whether you're an oncologist or a cardiologist or hospital medicine doc or whatever, there is a realm of difficult shared decision making where there's conflict within families or peoples because of their cultural background or are committed to things that we know medicine can't deliver for them. Where there is a more sophisticated realm of counseling and and decisional support and this notion of life completion and life closure as a developmental stage that I do think falls in the realm of a specialty.

Henry Bair: [00:17:05] So, Ira, in your books, you've shared many wonderful patient stories. In fact, your books are often structured such that each chapter uses a vividly told story to illustrate a specific point. For those of our listeners who haven't had the chance to read your books yet, would you mind sharing a story that particularly illustrates palliative care done well, or that perhaps demonstrates to you at a personal level why palliative medicine is the most meaningful work that you can do?

Ira Byock: [00:17:42] Boy, there are there are many. And I hate to hang the responsibility of carrying that weight on any one story. As a family doc who, you know, did adult emergency medicine and all and spent years in emergency departments. I've always had a special interest in caring for children and adolescents, even babies, frankly. A story that is very close to my heart that I tell in the best care possible. The third book is of a patient. I'm going to use her real name. I call her Sharon in the best care possible, but her real name is Karen. Her mom has asked me to start using her, her real name. So I do this with not only permission, but encouragement. Karen had terrible cystic fibrosis. She must have had multiple levels of the of the problematic gene because she got it really bad and it impacted not just her lungs and with goop in her bronchial tree, but also her gut. And she would often be in the children's hospital at Dartmouth. There she would cocoon, basically, she would isolate herself whenever she was in the hospital because usually because of respiratory problems with sometimes GI problems, she'd come with a little roller bag, would never actually unpack it. She just opened it on her floor and work out of that. She was often in the dark. She would answer nurses and the child life specialists questions with single words.

Ira Byock: [00:19:18] And. And the nurses were all worried about her, thought she was depressed and probably was. And, you know, but if this was her way of controlling, she just wouldn't talk to people and she would cocoon. It was about the only control she had. Her family was socio economically disadvantaged. A single mom after a divorce lived about an hour and a half away, so she was off. Karen was often in the hospital for, you know, a week to two or more weeks at a time alone. And our palliative care team was finally consulted on her because everybody hospital was kind of at their wits end. They didn't know what to do for this person. And I went up to see her and initially she didn't want to talk to me. You know, I knocked on the door. Hi, I'm Dr. Beigel. I know who you are. You're your doctor. Death. Thank you very much. You know, this isn't going well, and. And I was just incredibly persistent. I would go back every day. Hey, I just want to meet you. You know, eventually she would talk to me a little, but usually without making eye contact or sometimes challenging me, she knew that she wasn't going to live to reach adulthood. She wasn't a transplant candidate for a few reasons, but she would engage in magical thinking.

Ira Byock: [00:20:32] She was really smart and she knew she was going to die of this. But she also had this kind of cognitive dissonance where she would talk about what she wanted to be when she grew up and she wanted to be an animal groomer or work with a veterinarian or something like that. If you came to see Karen during the late afternoon, she'd often be watching this guy, Jeff Corwin, on the Discovery Channel. And if you walked in and she was watching Jeff Corwin's show, he had to leave and come back or watch with her. She would literally not acknowledge your presence or or talk with you. In trying to invest social capital. I spent a fair amount of time watching Jeff Corwin with her. And and one day we were visiting, I said, well, you know, you love this guy. You know everything about him. You know all the names of the animals at his farm in western Massachusetts. Have you ever thought of writing him? Why don't you write him a letter? She saw, he'd he'd never get it. I said, Karen, you write him a letter. I promise you I will get it to him. I had no idea how I will do that at the time I made that. I mean, I've done harder things than that. It took some encouragement and she wrote him about two and a half, three page letter, and I got it to him.

Ira Byock: [00:21:49] I wasn't it wasn't that hard. I went through his publisher and I was able to get it in those hands. Damn, if he didn't respond within like 48 hours. And he invited her to spend a day with him on his farm. When I next saw her in the hospital, she wasn't admitted. She came with her mom and I saw her. And for the first time in the many months that I knew Karen, she hugged me. And she said that was the best day of my life. And her mom actually said this was the best I ever. Now I couldn't find in a disease treatment algorithm for cystic fibrosis or the palliative care of people with advanced lung disease and pancreatic insufficiency to write somebody they like on television. But in sitting with Karen and beginning to imagine what the world must be like for her, trying to help her by kind of imagining what it looks and feels like to be her, it became obvious that this was one thing maybe would have meaning for her. This notion that she could have meaning and achieve something of value. They even have have some joy. In my realm, that is the ultimate. Fulfillment of this discipline, of this of this practice.

Tyler Johnson: [00:23:18] I just want to highlight for listeners, something is a transition to the next question. Cystic fibrosis can be a particularly punishing disease. It leaves people in the hospital a lot. It restricts what they can do and a lot of aspects of how they can live their lives. That's becoming less true over time, but especially many years ago in particular was true, which is just by way of saying that. I think that's a beautiful example of what we've sometimes on the podcast referred to as. Re Humanizing medicine, right? Taking a situation that would otherwise be really difficult where a person might be robbed of their humanity by means of the therapy that they need for their for their illness and finding a way to return it to them. And I think one of the things that I have been struck by, as we've spoken with a number of our guests, is that. I think that there are a lot of individual doctors who are quietly going about the work of humanizing their own little corners of medicine. And one of the places where I think you have done a lot of work in that area, both in your own personal doctoring as well as in your writing and advocacy and organizing.

Tyler Johnson: [00:24:28] And all the rest of it is dehumanizing the dying process and dehumanizing the the space around dying. And so I'm wondering if you can just talk a little bit about how do you think about that? You know, I think that this, in a way, is almost countercultural for doctors because especially as doctors, often we we think of death as the ultimate enemy or the ultimate failure or both. Right. And everything that we're doing is to keep it at bay. And then when we no longer are able to keep it at bay, we're sort of left defenseless. Like, then the last wall has been breached and then we just don't know what to do. Right. And so I'm wondering if you can talk to us a little bit about how you think about the space and time around dying and how you try to bring a sense of humanity and compassion and presence to your own patients as as they approach that phase of their lives.

Ira Byock: [00:25:28] Hmm. Nicely put. I see. Dying as a part of human living. No one gets out of this one alive or. Through no ill intention. We doctors do a disservice if we cannot integrate the fact that the patients we care for are mortal. And they will die. Into our conceptual framework of human life. Because at some point if we act as if illness and dying were solely medical problem to be solved. At some point, we inadvertently do a disservice to those who are trying to serve because we're pushing against the pathophysiology, their disease with ever more intensive treatments. And it's like pushing against an immovable object with the patient, the person of the patient between us and that immovable object. We're not going to move mortality. So the more we push, the more the person gets squished. At some point, we have to kind of do both care well for people using the power of our diagnostics and our therapeutics and our pharmacopeia, but acknowledge that ultimately this is part of their life, not just an illness. So I think about and what I've written about for years is what are the developmental landmarks around human decline and dying? Right. One way to think of that is what would be left undone if someone died just like that. Suddenly today they got hit by a car. They had a intracerebral bleed and a massive heart attack, whatever, because that happens to what would be left undone. Does your family know the passwords to your bank account? Do you have a will or are they going to have to go through probate and lose 35% of your estate to unnecessary fees? But beyond that, are there things left unsaid between you and someone you love or once loved? You know, I've so often I've said to patients after knowing them for a little bit, you've mentioned once when I first met you that you'd been married before.

Ira Byock: [00:28:10] Does your first wife, is she still alive? Does she know you're been so seriously ill? Would it matter for you to get back in touch with her in case you were to die? I have to tell you, Tyler, that sometimes I've said that to people and they look at me like I read their money. How'd you know? Well, there's some commonality to the human experience. As one or the other of us is facing mortality. Sometimes the infractions and the anger between us start to look small in proportion to the history we've shared. It happens with all married couples who had separated fathers and sons, parents and children, business partners, old friends, all of that. So there's that. Would there be something left undone? There's a chance to tell stories, to reminisce. This is not just woo woo again. This is the stuff of life completion, this notion of reminiscence and of we are making meaning by acknowledging our shared lives. From a family practice perspective, this is in the zone of the way I was taught family medicine, a chance to make a legacy. I I've been a big proponent of people recording stories from their youth. I used to give out this thing called a family heritage workbook, which just used to you fill it out.

Ira Byock: [00:29:32] And where did you grow up? Who did you share a room with? You know? Do you remember your first or second grade teacher? One of the things that I used to ask people once I knew them. Did you ever get in trouble when you were like ten or 12? Were you mischievous? You know, some of the greatest stories come out. Those stories are the individuals like who else on the planet could tell your stories? But they in a sense, they belong to a family, too. And I would encourage as a doctor, I would encourage people to tell your stories. You know, if you allow your family to record or we can send volunteers in with a M.P. three recorder, you will make an heirloom for your family. Who else on the planet could give them this gift? And lastly, I'll end with this notion of honoring and celebrating people. And I've been I'm pretty strong at counseling families to say, you know, one thing you might do before dad dies or before mom dies is honor and celebrate her in a pretty deliberate way. And I've done this with people in the ICU, by the way. Get people together. We'll look the other way. You can bring 15 or 20 people in here and and tell some stories. And and after she dies, you're going to have a celebration of life. It's so much more fun to have it while she can hear. Right. Don't come, then. Come now.

Tyler Johnson: [00:30:54] If you're starting a movement for pre-death funerals, I'll sign on.

Ira Byock: [00:30:58] Absolutely. You know, wake people out of life to honor and celebrate. People, from my perspective, is, is one of the pinnacles of human caring. You know, even death can't take from us the fact that we value and we love one another and we want to celebrate our lives and relationships. It's very healthy.

Tyler Johnson: [00:31:19] One of the things that you've written and spoken about that I think has proven to be one of the most widely practical pearls for my own personal practice as a practicing oncologist is what you've written about the four things that matter most. Can you tell us a little bit about the back story and then sort of what those things are and why they matter?

Ira Byock: [00:31:40] Sure. So the four things that matter most started out as saying the five things, right? I wrote about them in dying well as the five things. Please forgive me. I forgive you. Thank you. I love you. Goodbye. And I didn't make them up. I learned them from a social worker and nurse that I worked with back in Fresno in that first year of my residency. And I decided early on that I was going to be kind of a Johnny Appleseed of this practice, because I saw in my own clinical practice, again, as a young resident, that it was often really helpful for people to say at least four things before they were forced to say goodbye. Please forgive me. I forgive you because there's probably never been a perfect relationship in the history of our species, right? Even the most close and loving relationships are often have histories of misunderstandings and sometimes hurt feelings and not uncommonly real transgressions. Thank you and I love you is often stating the obvious within a relationship. Thank you for being part of my life. Thank you for being my friend or all of that. And I love you.

Ira Byock: [00:32:49] I realized in teaching this over the years and in early on it became part of every presentation I gave around end of life care or hospice care. I'd always put in a slide or two and tell a story about the five things, and not uncommonly, somebody would come up to me after the presentation or later write me a letter saying, You know, this was great, Dr. Byock, but, you know, you don't have to be dying to say those things. And I'd, I'd be polite and say, Yeah, absolutely, you're right. It only took about ten years for me to realize there was a reality, was trying to teach me something here. Every time somebody said that to me, I'd say, you know, I bet you have a story or two. And I started writing down their names and getting back to them and eliciting their stories. And then I started teaching those. And it doesn't matter. It's true that, you know, you don't need to be dying or being forced to say goodbye. To have those four things. Those four sentences. Those statements be of value. You just have to be mortal.

Tyler Johnson: [00:33:55] I will say, though, just from my own personal practice, that I think you're absolutely right that while, of course, it's universally helpful and meaningful people find it particularly poignant and especially meaningful when they're grappling with the death, either with their own death or the death of someone who loves them. Right. And that's often my penultimate conversation with the person when they're still lucid, is to say part of the reason that I'm being candid with you about your time being short is precisely because I want you to have a chance while you're lucid, to be able to say these things. And those conversations, paradoxically, have often formed some of the very most beautiful parts of my practice as a physician.

Ira Byock: [00:34:39] It's music to my ears. Thanks for doing it. I will say I said the four things to my mom when the galleys for the book came out. Because if I was going to go on radio and television and talk about this book, I had to say them to her. Right. And I was not I mean, we did not have a perfect relationship. And I drove the poor lady crazy when I was a young adult and she was an overbearing Jewish mother in a way that was not fun all the time and all of that. And so please forgive me for driving you crazy, and I forgive you for driving me crazy at times. And thank you for being my mom and my best friends through all so many difficult times. And I love you. Right? Good thing. Because about six or eight weeks after that, she died suddenly. Had I waited, had I not been forced by the fact of those galleys to have that conversation, I would not have grieved as easily. I would have felt there were things left unsaid that I'd missed an opportunity to say to my mom.

Henry Bair: [00:35:52] Thank you very much, Ira, for being open and candid about your experiences. We really appreciate it. I'm wondering whether next you can share some of the lessons you've learned from taking care of patients who are dying that you would like to impart on other clinicians, most of whom are not necessarily taking care of patients who are at the end of life. In other words, what are some things that all clinicians should be mindful of?

Ira Byock: [00:36:18] But it's really important to understand that health and illness, the experience of living with injuries or diseases are personal. They're only partly medical. That we're there first and foremost to do the medical stuff. Have the problem list, diagnose and create a plan, assessment and plan for every problem on the list. Have a plan of care that aggregates those, but always remember that for the patient, this is personal. It seems like a subtle distinction, but it's huge. And if we understand that, then our medical tools and expertize can be so much more valuable to the person of our patients. When we don't, patients feel dehumanized. They feel like we don't listen. They feel they don't feel heard and understood. The doctor only talked about my scans and my lab tests in the next. Whatever it is, it's different. I'll say something that I was told and taught many times before I finally heard it, and that is to listen. Patients will tell you what their priorities are. If you listen, you can learn so much. When I was taught communication, at least what I took away from it is that for me as a doctor, communication was giving information. Having people understand the information and usually getting some informed consent for whatever I was there to do. But communication requires listening. People do need to feel heard and understood for there to be a relationship.

Ira Byock: [00:38:11] I can't tell you. I was probably in practice, I don't know. Over a decade before it finally dawned on me what those wise old doctors were trying to teach me about listening. And when I did, my practice got really deeper. It really became different. So first and foremost, show up. Lean forward and listen. Even when I was practicing in the hospital or in the emergency department and was really busy, and unless there was really, really an urgency, I would start every interview by. Tell me a little bit about yourself. Somebody would say, well, I've had this damn stomach pain for the last six weeks now. We'll get to that in a second. Where did you grow up? The social history. In 3 minutes, I can create a bond with somebody where this relationship between us is centered in their life, not just in this hospitalization or this complication of their illness, but it starts in the context of who they are as a human being. And then we rapidly go back to their past medical history or their chief complaint and their past medical history and their the history of present illness. I just want to know a little about who they are as a person. Makes a huge difference.

Tyler Johnson: [00:39:31] It strikes me you have now, if I'm counting correctly, I think you are now in your fifth decade of medical practice. Part of the reason that we started this podcast is because, as I have spoken to people who are coming up through their medical training, I've found that it's become increasingly common for doctors to be, be they undergraduates or early medical students or whatever to work with doctors who they'll shadow them during the day in clinic. Maybe this is a somebody who's an undergrad and then at the end the doctor will take them aside and say, you know, I'm glad you came to shadow me. And you really probably should think about something else other than medicine for your chosen career because of fill in the blank. It's become bureaucratized. We're just widgets in a, you know, a factory line. It's all about business. It's whatever or whatever. And let's be clear, right? This is not some imaginary phenomenon. I mean, there is an epidemic of burnout. There are huge systemic problems in the practice of medicine. And we're not trying to deny or downplay those. Nonetheless, as someone who has written probably as extensively as just about anybody else, about the beating heart of medicine, I'm curious, what is your reaction to that sentiment, that real medicine is a thing of the past, that you can't really be in the business of medicine and practice it in the meaningful, beautiful way that it apparently, some people say, was practiced 50 years ago and in the way that it's meant to be. What would you say to those medical students who are thinking about this as a career?

Ira Byock: [00:41:11] Firstly, that the good old days weren't all that good, but there was a lot of burnout 50 years ago and at least 30 years before that it was hard and they were different difficulties and stresses. But it was hard. I still think it's the best profession in the world, the most rich and potentially meaningful in the world. But there's no way to diminish the fact that being a doctor is not easy these days and that the corporate practice of medicine and profit motive within medicine is eroding and always threatens to suck the soul out of practice. The way to not be too disappointed or frustrated is to keep one's expectations realistic. You're likely going to have to be in tension with corporate America or the profit motive to carve out enough time to enjoy the practice of medicine. And that's not going to be easy and not going to be easy in the foreseeable future. The reason I'm still working these days and I'm not seeing patients clinically, but I'm sure deep into trying to make health care better, to improve patient experience, improve quality of care, and improve access to services, quality of care, and create business cases for whole person caring so that you don't have to have a champion every time to make sure that somebody asks your name, asks who you are.

Ira Byock: [00:42:42] Tries to align what we do with what matters most to you personally. All that. But your expectations are going to need to be factor in that. There's going to be advocacy on a very personal level for you to have a practice setting a contract and expectations that are that allow you to practice meaningfully. Right now, I think it would be very hard to practice full time in like as a hospital medicine doc. Burnout is not just a risk. It is for sure you're going to burn out, I think. I think there needs to be some organized pushback. But for people, students who genuinely enjoy other human beings, who want to be of service to other human beings and who hopefully are utterly fascinated with the science and the technology of medicine, man, I can think of no better way to spend a professional career.

Henry Bair: [00:43:42] Thank you very much, Ira, for sharing your vision and for telling us all of your really wonderful, meaningful stories.

Tyler Johnson: [00:43:49] We really appreciate having had you on the podcast.

Ira Byock: [00:43:52] Thank you very much. To your listeners, thanks for listening in. You can learn more. I have a website ira bio dot org. Follow me on Twitter. Know the usual things I'm supposed to say. We will. We'll we'll.

Henry Bair: [00:44:03] Be sure to link Ira's books and his website and his Twitter in the description of.

Ira Byock: [00:44:07] The episode. I love being in conversation with with our culture and with my colleagues out there. So thanks for making this time available. I really appreciate it.

Henry Bair: [00:44:20] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the doctors art. If you enjoyed the episode, please subscribe rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.

Tyler Johnson: [00:44:38] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor patient or anyone working in health care who would love to explore meaning in medicine with us on the show. Feel free to leave a suggestion in the comments.

Henry Bair: [00:44:52] I'm Henry Bayer.

Tyler Johnson: [00:44:53] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.