EP. 43: ON ENDING WELL
WITH SHOSHANA UNGERLEIDER, MD
An advocate of better end-of-life care and award-winning documentary producer shares the importance of making ending well a part of living well.
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Episode Summary
Too often, modern medicine focuses on life-extending interventions for those nearing the end of life at the expense of quality of life. Our guest today, Dr. Shoshana Ungerleider, argues we urgently need to rethink the emphasis of end-of-life care. She's the founder of the End Well Foundation, a nonprofit that seeks to improve how doctors and patients approach issues of mortality, as well as an executive producer of the 2018 film End Game and a major funder of the 2016 film Extremis, two Academy Award-nominated short documentaries on end-of-life care. As a health communicator. Dr. Ungerleider is the host of the TED Health Podcast and has been featured as a medical expert on CNN, CBS, PBS, Fox News, and other news networks. In this episode, she discusses her journey in health care and shares her mission to transform the end of life experience of patients everywhere and make dying well a part of living well.
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Dr. Shoshana Ungerleider is a physician, founder, speaker, producer, writer and the host of the TED Health Podcast. She works as an internist practicing medicine at Crossover Health in San Francisco. She received her medical degree from Oregon Health & Science University in Portland, OR and completed residency at California Pacific Medical Center where she serves on the Executive Board of the Foundation Board of Trustees. She is the founder and President of the Board of End Well and is a limited partner in Trucks Venture Capital Fund.
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In this episode, you will hear about:
• How Dr. Ungerleider found her way to a career in health care and how she pushed through imposter syndrome while in medical school - 2:23
• Dr. Ungerleider’s formative experiences working with elderly patients in the ICU, leading her question the practices of modern medicine when dealing with seriously ill patients - 10:18
• How the Covid-19 pandemic has shifted public consciousness around death and dying - 15:30
• The origins of End Well, the conference and organization founded by Dr. Ungerleider and her colleagues in 2017 - 23:51
• What it would look like for there to be a shift in the cultural conversation around death and dying - 30:31
• A reflection on the risks of romanticizing the dying process - 36:54
• The recent cancer diagnosis in Dr. Ungerleider’s family and how this has propelled her to proactively manage her own risks - 43:49
• Advice for new clinicians on dealing with patient deaths - 48:49
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Henry Bair: 0:01
Hi, I'm Henry Bair.
Tyler Johnson: 0:03
And I'm Tyler Johnson.
Henry Bair: 0:04
And you're listening to the Doctors 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 its 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: 0:27
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 Court 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: 1:03
If you've listened to our past few episodes, then you will already be familiar with the idea that there's a problem with how we as a society think about death and dying and the role of medicine in all of this. In short, modern medicine too often focuses on life extending efforts for those nearing the end of life at the expense of the patient's holistic quality of life. Our guest today, Dr. Shoshana Ungerleider, is an advocate for better end-of-life care. She's the founder of the End Well Foundation, a nonprofit that seeks to improve how doctors and patients approach issues of mortality. As well as an executive producer of the 2018 film "End Game" and a major funder of the 2016 film "Extremis", two Academy Award-nominated short documentaries on end-of-life care. As a health communicator. Dr. Ungerleider is the host of the "TED Health Podcast" and has been featured as a medical expert on CNN, CBS, PBS, Fox News and others. In this episode, she discusses her journey in health care and shares her mission to transform the end-of-life experience of patients everywhere and make dying well, a part of living well. Shoshana, thank you so much for being here and welcome to the show.
Shoshana Underleider: 2:21
Oh, my goodness. Thank you so much for having me.
Henry Bair: 2:23
So you are one of the leading voices advocating for improving how we treat patients with serious illnesses and those at the end of life. Before we get to all of that, however, can you first tell us what initially drew you to a career in medicine?
Shoshana Underleider: 2:40
Well, first, I have to say, I don't know that I'm a leading voice. I think I am a voice. Maybe I'm loud so it looks like I'm leading. I don't know. But it's funny when I think about the early days of thinking about medicine, and actually, I wasn't pre-med in college. I had I was one of those people that kind of had every single major. I was interested in women's studies and environmental studies and outdoor education and art. For a while I thought I wanted to be a professional weaver. I got really into like, textiles and weaving, so much so that I actually had to drop my chemistry class because I couldn't do both.
Henry Bair: 3:22
By the way, this podcast is packed with doctors who did not major in biochemistry. So you are in good company.
Shoshana Underleider: 3:30
Here, right? Yeah, it's a lot more fun that way, I think. But I got really interested actually, in marine biology, marine conservation, biology. Toward the end of college and thought maybe I would do a PhD in that and quickly realize spending, I don't know, two or three months at the Marine lab on the Oregon coast where I had gone to undergrad, that I really wanted to work with people and that was super important to me. And I finished college really kind of looking at, Gosh, where do I go from here? And I spent a few years actually out in North Carolina at Duke University, where I was an intern at the medical center and then started doing some research at the VA there and and actually had to go back to school and do a bunch of post back classes because I decided through that experience that medical school was the path for me. And so, yeah, I took a really kind of long route like, like many of us these days did, did a bunch of other things in college and then found myself back at at age. How old was I? 26, I think. I want to go to medical school.
Tyler Johnson: 4:46
So you and Henry can have the debate after the show about whether you qualify as a leading voice or not. But whatever you're a, let's say, prominent voice. But walk us through. So you start medical school and then how do you get from there to, well, first of all, what do you do now? If you can talk a little bit about your advocacy and then how did you get from medical school to where you are now?
Shoshana Underleider: 5:07
I guess what I would say is, first and foremost, I just want to say I had a very hard time in medical school. I actually in the first months thought about quitting. I was like, this is not for me. It was just really, really hard. And it pushed me to my limits, you know, along every step of the way. Aside from getting to third and fourth year, be with patients, which I felt like I was good at, being in the classroom was really, really hard. So if people listening are in that boat and they feel like it's really hard, it is. But I would say, you know, keep keep going.
Tyler Johnson: 5:47
I have this very distinct memory. I came from a not Ivy League college, and I was very self conscious about not having been at an Ivy League college for medical school. And I still remember because it felt to me like everybody else had been to something, to a place like that. And I just remember that I had this one time when I was so convinced that I had failed all of my exams, and then I saw this person who I knew had gone to Harvard for undergrad. And I swear this is true. I saw her walking towards me across the quad and I thought, "Oh my gosh, she is a member of the Committee of Medical Students who went to Ivy League undergraduate universities, and she's coming to tell me she's been sent to tell me that I failed all of my exams and I'm not going to be in medical school anymore." Which of course is totally irrational and makes no sense. But I was just convinced that I was not cut out for this. And I just knew that at some point one of the people who was cut out for it was going to come tell me that, in fact, I shouldn't be there.
Shoshana Underleider: 6:46
Absolutely. We sort of play those games with ourselves. I think that's really normal to kind of have that. I guess that's imposter syndrome. I felt it. I still feel it sometimes. I even went so far as in medical school. I stopped checking my grades because I said I've made it. Here's this is where I wanted to be. And I'm here and I'm working as hard as I can. And if that's not good enough, well, okay. It doesn't even matter what my grades are. I just need to get through it. So I actually felt like that was really freeing. People thought I was insane because I wasn't in that game of like, "Oh, what did you get on that test? Oh, what did you get on that mean?" Whatever. I just was like, I don't I don't care. Like, I'm really working hard here. I'm doing everything I can. And so that's good enough. Let me know if I'm going to fail. You know, I told my I told my my professors. But if I'm just, you know, cruising through here, this this is good enough. The earlier part of your question was, what do I do now? I'm a I'm an internist. I practice general internal medicine these days. I'm a primary care doctor. But I did spend after residency. I spent a good gosh, six, seven years as a hospitalist. I was hospital based for quite a while. And then it just so happened at the beginning of COVID, right before COVID, I transitioned to primary care. That was focused on so many other non clinical aspects of work that it made a little more sense for me to have more set hours. And so my day job right now is anything from hosting/writing Ted's Health podcast to running a nonprofit organization called End Well, which is focused on making the end of life a part of life and looking at the cultural conversations that need to take place to make that so. Certainly also practicing medicine about two days a week, and then I do other kind of media work, found myself throughout the pandemic kind of by accident doing national cable news. The medical expert work around public health, specifically around COVID. And I still do that from time to time, although it's slowed down because it appears no one cares anymore about the about the pandemic, despite the fact that it is very much still with us. But I don't need to tell you two that.
Tyler Johnson: 9:15
That's because everyone's healthy now. Didn't you hear? You must have not gotten the memo.
Shoshana Underleider: 9:20
Yeah, it's everyone's fine. There's no RSV or flu or any of that. We're just. We're good. Yeah. So every day is really different for me. And it's been a really interesting journey when I think about the last ten years or so in gosh, I'm nearly ten years out from residency. From executive producing documentaries to television. I mean, it's wild because none of it really was by design, I sort of thought I would do hospital medicine for my career and maybe maybe go back and do palliative care fellowship, because that was something I really cared about. But I don't I don't think that's in the cards for me. But I certainly am very much focused on thinking about how collectively, as a as a society, we can turn our attention to thinking about how to make ending well possible for for all of us.
Henry Bair: 10:18
You've given us a lot there to unpack, and I hope we get the chance to discuss at least a little bit of everything you've mentioned. But I'm really interested in what drew you to palliative medicine. You mentioned that you are not fellowship trained as a palliative care physician, but so much of your current work is in palliative care. On this podcast, we've spoken with a few palliative care doctors, all of whom could point to a specific moment in their training or a specific patient they cared for. That opened their eyes to the importance of providing not only physical but also emotional, spiritual and social support for seriously ill patients. Is that true for you too? Was there a moment that made you realize why this work is so important?
Shoshana Underleider: 11:10
Yeah, I think I got interested in palliative care, certainly in my first couple of months of intern year of internal medicine residency when I was in the ICU. I was so clueless I had no idea about- I'd barely done an ICU rotation in med school. So once I sort of had that, got the medicine part a little more figured out. I kind of started asking the questions of like, why are we putting 80- and 90-year-olds in the ICU who are so ill at baseline? And nothing that we're going to do is going to make them younger or fix their incurable diseases? And why are we prolonging suffering for for so many of these people, especially when it's clearly not what they want? Or we haven't asked them, you know, do you understand what's going on here? And are the expectations aligned that you may not survive this hospitalization? Or that you're not going to return to your baseline level of function? You know, I just didn't see those conversations happening. And it was so obvious to me that that was a problem. And it was not just a problem for patients and families. It was actually a problem for the clinical staff too. But we kind of weren't talking about how distressed we were about seeing so many people die in pain and coding, you know, the 95 year old who's been in the ICU for for two weeks and breaking their ribs and then it just there were so many instances in that intern year experience of just being shocked at how we practice medicine in this country and the lack of of of conversation about it. And when I saw how important the field of palliative care was, you know, I just said this is something that we all need to be sort of trained in how to have these kinds of conversations about goals of care, about prognosis. The patients want to know that information. And just to be treating all of our patients and families like human beings, like how we would want to be treated or we would want our family treated in these situations of of being critically ill. So it started kinda there, and there are many instances of of being on overnight call in the ICU where I would hear the code blue alarm go and we'd run to the bedside and. .. you know, I definitely very vividly remember a patient, a Russian speaking patient that I had cared for on the wards and then in the ICU. And then he went home and then he came back and then he went home, you know, everybody's had that experience. And we had tried because he was so sick and had been for so long to speak to his family, to speak to him about remaining, you know, a full code and what that would mean for him and if that was really what he wanted. And we were never really able because family was traveling and, you know, he was in and out of being able to have those discussions to to really go there, but having to code this man than have him ultimately die in a room full of strangers covered in in our gowns and gloves was just so horrific for me. I think that was one defining moment where I just said, "this is not okay and we need to be talking about this more." And it kind of set me on this path of not only thinking about how can we improve medical education so that all all med students and residents are trained at a very baseline into how to have difficult conversations with patients. But also think about culturally, you know, why do we. See death as such a taboo subject? And why do we run away from hard conversations about about illness and mortality? From there, I think that's how I was sort of set on this path.
Tyler Johnson: 15:30
Let me ask you a question, sort of changing registers. So I have this hypothesis that I think you can see evidence for in multiple different places. So let me explain a little bit. It occurs to me that the pandemic, especially the first year of the pandemic, was a time when society sort of uncovered some vitally important narratives that had always been there. We had managed to hide them largely from larger societal consciousness, except for for the people to whom they could never hide from them. Right. So a really good example, I think, is the racial reckoning that happened after the murder of George Floyd. There are a lot of obviously complicated reasons why that sort of took hold and the Black Lives Matter movement took hold and everything then in a way that it ever hadn't before. But I think that part of it was the combination of the fact that normal life had stopped. Everybody was at home and everybody had access to both traditional and social media. Right. And so you sort of couldn't avoid having this these racial disparities thrust in front of your face. Right. And I think that once people had to recognize what was happening, then it was just normal to respond to that with this sort of visceral reaction to get out and march through the streets. Right. To try to talk about how important this was. And I feel like another place that we see that is with the the reality of dying. Right. As you I think rightly said, we have largely sort of hidden that from ourselves, unless you have a very close family member that has died, most of us have just managed to put ourselves in a world where it's just sort of out of sight, out of mind. Right. But then the pandemic happens and you're watching whether on Twitter or the nightly news or whatever, these pictures of the cooling trucks for corpses lined up outside of New York hospitals because they can't get the dead into them fast enough to get them cleared out of the hospital. Right. I mean, it was just unavoidable, like death was in the air in a way that it hadn't been arguably in a century. Right. And so I guess I'm wondering two questions for you with that as context. One is, do you as someone who's been trying to get people even before that to have these conversations and trying to sort of get it into the cultural consciousness, Do you feel like the pandemic moved the needle? That's the first question. And then the second question is whether that whether it did or didn't, what do you feel like the cultural conversation around death and dying needs to look like?
Shoshana Underleider: 18:05
I can't speak from an evidence based perspective on the first question, meaning I think people actually have studied and will publish data, I hope. On whether or not the pandemic shifted public perception around death and dying or how people personally process this this idea of mortality. And I'm super fascinated by that. I can only speak anecdotally that I think that my feeling is that one of the -if you can even say this- the silver linings of of the pandemic was that it showed people that death is never that far away, that no matter how old you are, no matter where you come from, we were all impacted by this virus that didn't didn't care what what race you were, what gender, how old you were. Right. Although certainly older, older adults were disproportionately impacted, of course, in terms of serious illness and death. But I think my hope- Well, I guess I'll say it. I think that more people certainly recognized how proximate, you know, death and dying is. I don't know so much that it will endure. I think that it was such an intense experience. I think people recognized it. They sort of had their own either personal grief experiences or own kind of terror around being impacted by COVID. And I don't even think most people consciously dealt with a lot of that stuff, which is maybe a conversation for another day, but I don't know that people will necessarily think differently going forward. I think that we will, well, I think I think many people will sort of forget about this experience and maybe not act differently in their lives in terms of whether it's advanced care planning or any other, depending on how old you are, issues around thinking about the end of life differently. I think that BJ Miller, who's a friend and and certainly somebody I look to for advice and wisdom about this subject, says that we're kind of wired to run away from death and we sort of see that happen all the time. So in terms of what I hope the conversation would be in this country around death and dying, is that recognizing that living and dying really aren't separate things, Right? We're doing both at the same time, all the time. And I think if we can live with some sort of recognition of that, it can allow us actually all to live better every day. I think if life didn't have an end point, what would it all be for? And so speaking for myself, the idea of my own mortality, my own death actually keeps me awake to my life. Right. It gets me asking these questions of like, Gosh, what matters to me? You know, is the work that I'm doing in my life is how I'm spending my time. Really, at the end of the day, like what I want to be doing. Since for all of us, time is short, right? We don't know how long, right? It could be tomorrow, could be ten years. Hopefully it's many, many more than that. But we just don't know. But I think it's actually so helpful to kind of reflect on those questions.
Tyler Johnson: 21:47
I don't know how many of our listeners or if you, Shoshana, have seen The Good Place, but the good place is this really interesting television show that's about the afterlife. And I mean, it's sort of a parody. Well, it's very difficult to pigeonhole because it's sort of a parody, but it's also deeply philosophical. But in any case, the point is that these people have arrived in the afterlife and they there's a much longer back story, which I won't give spoilers, but eventually they're given sort of carte blanche ability to make heaven into whatever they want to make it into, more or less. And so they spend all this time trying to kind of like fine tune it and figure out like, what do you need to do to make Heaven "heavenly" for the people who have done good things on earth. And the thing that's really interesting is that they kind of get everything fine tuned and they think they have it perfect, and then they kind of let everybody run wild and everybody is miserable. And then the sort of final tweak that they need to make, they figure out is that the only way that they can make it meaningful is to make it end. And so they in effect, they introduce a way for people who have already died and are now in Heaven to die.
Shoshana Underleider: 22:58
Thanks for the spoiler.
Tyler Johnson: 23:02
All right, guys,
Shoshana Underleider: 23:02
Now I'm not watching that show!
Tyler Johnson: 23:04
Then it's all about the journey. It's about how they get there. But the point is that that's the thing that finally sort of makes it meaningful is that it ends right. And there's a lot of poignancy around the way that the show deals with this topic. But but the point is just to say that what you are pointing out, I think, is a really deep and sort of fundamental irony to being human that we do everything we can to convince ourselves, whether consciously or subconsciously, that it will never end, especially when we're young. Right. And it's easy to feel invincible. And yet the dawning recognition of the fact that it will end is actually the thing that then ends up making it sweet, that ends up deepening and highlighting the meaning.
Henry Bair: 23:51
Shoshana, you talked about how when you contemplate your own mortality, everything that truly matters to you is brought into sharper focus. This reminds me of a recent conversation. Tyler and I had the most recent episode, in fact, with Frank Ostasesky, a wonderful Buddhist teacher who created the Zen Hospice Project, whom I'm sure you're familiar with. One of the most striking things he said during that episode is that it's an absurd gamble to expect that when you are at the end of life or afflicted with a serious illness, you'll have the mental and physical strength to go after what matters most to you, to try all the things you want to do and to engage meaningfully with the people you love. So don't wait until then. Don't push things away. That was one of his take-home messages. And what you said really called it to my mind.
Shoshana Underleider: 24:50
Oh, yeah. Frank is so wise. He's written books about the subject. He's actually spoken at our end. Well, conferences think a couple of times. Even after right after his stroke, he came and got on stage and it was such a beautiful conversation. One of my one of my absolute favorites. He truly is just an incredible human being. So I very much agree that don't wait. And it also because we don't know when that day might come also, right? We always live with uncertainty in life, whether we recognize it or not.
Henry Bair: 25:26
So that's a great segue to the next thing I wanted to ask, which is about End Well, the foundation you created, you've alluded to End Well several times in this conversation already, and we know that End Well's purpose is to change the cultural conversation around end-of-life care. But can you tell us more specifically what the organization does?
Shoshana Underleider: 25:47
Yeah, so End Well was founded in 2017. And really we we started as a conference, kind of like a TED-style convening where we invited designers and tech folks because we're in the Bay Area, of course, and, and health care people and policy makers and health care administrators, but also like clergy and the media. I mean, pretty much we said, if you're at all interested in a conversation about solutions to make the end of life a better experience for everyone, you know, come and we had a really diverse group of people speaking, including BJ Miller, including Franco Ostaseski and others I'm sure that you would know -Lucy Kalanithi- and we weren't sure if anyone would show up, because what I had spent time doing after residency was kind of like I didn't do palliative care fellowship, although I was very interested in the subject. So I would go to all these conferences around the country to kind of learn more, to see who the national figures were in this space. Ian, I saw a lot of kind of siloed thinking and of course we get into that when you're in a specific field and you you sort of stay within your lane. And I think that's that's good in a lot of ways. But in this context, you know, we all kept saying at these events like we need to change how people think about death and dying and serious illness care and grief. And but we were all just kind of preaching to the choir about it. And I from my perspective, in order to shift culture, you got to invite all humans to the table and start thinking about it differently instead of just speaking to each other. And so that's kind of what end well aimed to do. And as I said, you know, no one had put on a conference that I was aware of that was truly interdisciplinary in this way. And we were shocked when we sold out three months in advance and had people on the waiting list, hundreds of people on the waiting list to come. And from that experience, we realized that, wow, there's a there there. And not only were people wanting to convene in person in San Francisco, but they were also wanting to consume this content as video content online on social media. So we started taking our short talks and putting in them out as as clips on social. And we quickly organically were getting like tens of millions of views of the content. I was like, Oh my gosh, because it was pretty much just me and like two other people. And we had no I was like, What's Twitter? Which now is a funny, a different funny question. We will go into that. But, you know, it was kind of surprising to me the power of social media and the potential for virality of content around this subject. And so from there, we sort of continued to be an annual conference. During COVID, it was fully virtual and have had hundreds of thousands of people attend our events and continuing to create more content out there, really to invite a new and different and hopefully innovative discussion about caregiving, about what it means to be seriously ill and live in a space of uncertainty. The importance of ritual around death and dying. Grief inclusive of collective grief that I would say that we are all experiencing right now in the midst of of the pandemic. And I think part of what gets lost in in a health care centric conversation about end of life and what we aim to do with end well is to really encourage people to to see that there's actually can be joy and beauty and humor and opportunities for deep connection, even in the midst of of illness and the end of life. And encouraging again, a conversation about how can we allow people to live fully until they die. So that's end well. And we've just launched our own podcast called End Well. And so that's been a really fun endeavor and we're hoping to reconvene in person next November in Los Angeles for for our typical or more traditional end well conference. But in the meantime, we're working on a big media project with USC down in Los Angeles and trying to continue this conversation about how can we truly shift the cultural narrative.
Tyler Johnson: 30:31
I'm curious. If you were the United States czar of culture and you could just twist some dials and move some switches and whatever, what do you feel like culture gets the most deeply wrong about the conversation around death and dying? In other words, you've talked about how well you want to change or shift the conversation, but in precisely what way? I mean, you've talked about a lot of sort of these ideas, but I'm just trying to because I think that sometimes I've realized that for myself as a doctor, it's hard for me to remember anymore what it would be like to see the world not as a doctor, because I just am right, and especially as an oncologist, right? Death and dying. I mean, it's there in the clinic all the time and it's there on the wards all the time. I mean, it's the it's either the thing we're talking about or the thing we're not talking about, but that we all kind of know is still in the room. And so anyway, so all of that is just to say that sometimes when I think about these questions, it's almost hard for me to answer a question like that because I have to, like, reprogram my brain for a minute and be like, Oh, well, if I wasn't a doctor who saw dying all the time, then maybe I wouldn't know about this, or maybe I wouldn't be thinking about this thing or maybe whatever. And so I guess I'm just I'm just trying to think through for people who have no experience in medicine, who have maybe literally never seen someone die. Right. Or maybe never even been close to that experience or who, if they did, it was probably a very brief one time thing that then they considered sort of traumatic and moved past. Like what for you as somebody who has seen people die and has been around that, like what do you feel like is the message that you want to bring to people who have no experience in that domain?
Shoshana Underleider: 32:30
I mean, that's a great question. And I 100% agree with you that as physicians, we can't unsee what we've seen in our lives. And so we always come at every conversation, frankly, with that, with that bias, I can't even- it's funny- I can't even see someone walking down the street without trying to diagnose, like, why are they walking that way? You know, why is the hand tilted that you know, and it's like, oh, just stop. You know, that's one of the things I would have never guessed would would be true about being a doctor, that you just you always just live with that mindset, which is sometimes not good. But I think, you know, in terms of the of the cultural conversation and again, I'm going to come at this with my physician bias, which I don't love. It's hard. It's really hard. I would like for people to get what we call goal concordant care, right? It's it's you know, I want people to have an experience in and around the end of their lives, whether it's a health care focused experience or not, that's in line with their goals and their values and truly honors the life that they've lived. And I realize that's a very intentionally vague answer because it very much means different things for different people. I think when we get into this, like what's a good death conversation, that's not useful necessarily, because I could certainly tell you what a good death looks like for me, but there shouldn't be a value judgment placed on it for others. And so one thing I do know, I'm not a researcher, never will be. But trying to measure goal concordant care is really hard, especially when we're talking outside of a health care environment. And so one of the things we're always thinking about and well is like, how do we as an organization measure success given that we're tiny and far removed from health care and thinking about, you know, if our mission truly is to make ending well part of living, well, what are the surrogate markers that we can look at to see if we're moving the needle? And it's just a constant conversation for us because it's a very, very hard thing to measure. So I guess I would say that's my kind of answer/non-answer. And I would actually be curious, given your experience, like what what you would do right differently in terms of of shifting, if you think that's important to shift the cultural conversation around death and dying?
Tyler Johnson: 35:09
Yeah. I mean, I think my inclination is very similar to yours. I mean, there's a more complicated question that has to do with health care systems and the way that a hospice is administered. And I mean, that's a sort of a separate health care systems question. But on a personal level, I agree with you that I feel like having accompanied many patients right up to the cusp of their death and some patients, even as they're dying, I feel like that's the the biggest thing is just that it's transformative to me to recognize just what you said, that life ends and that and recognition of the end of life, I think, does bring a different. We use the phrase "in a new light" so much that the phrase has become shopworn and totally lost its meaning. But in this particular case, that's actually what I mean, meaning that I actually feel like when I recognize how short life is, it actually illuminates what life means. Like it's like turning on a light in a room that I didn't know was there before. And the light is different. It's like a honey colored light. It's softer and gentler than the normal sort of harsh light of thinking about life in terms of objectives and goals. It brings a- it sort of softens sharp edges and and just makes life sweeter. I don't know. It's it's a sometime I need to meet a poet so that I can employ the poets to explain what I'm fumbling around trying to trying to explain. Let me ask you one one question that might seem sort of purposely provocative. I don't really mean it that way, but it is something that I have thought about a lot. I feel like when I was in residency and then in fellowship, which is about ten or so years ago, there had been this famous like New York Times article that had been put out where they had surveyed doctors and then surveyed not-doctors to ask them what they wanted at the end of their lives. And the point of the article was that all the doctors wanted to die at home and all the people who weren't doctors, not all of them, but many of the people who were not doctors wanted to die in a hospital. Right. And so the point was and the point of the article, in effect, was if you really knew what was going on, like if you had been in hospitals, you wouldn't want to die there. You would want to die at home. Right. And so and so then the the easy sort of prescription to come out of that article was to say, oh, we just need to educate people about, in effect, how terrible it is to die in a hospital so that then all of them will know that they want to die at home. Right. And so for my fellowship in the early part of of my time of faculty, I feel like what sort of the that sort of gave us this kind of unarticulated justification to push really hard that when people were in the hospital and they were getting close to the time of their death that they really needed to get home because we knew that they would be happier there. Right. Like that article was the justification to show, well, if they only knew what we knew, then of course they would want to be at home. But over time I came to recognize that, no, actually some people did not want to die at home, even if they were fully educated. That's actually not what they wanted because it was scary because they didn't feel like they had the right support, because they didn't know what to do if things got bad, like, you know, a whole bunch of reasons. Part of me wonders if sometimes I am guilty of romanticizing death like this. Seems like one example of sort of like, oh, die at home and surrounded by the people that you love and sort of has this kind of gauzy feel to it that like that will make death into something that is beautiful, right? When in fact, for most people, death, both for the person dying and for the loved ones around them, is gritty and kind of gross in some ways. And it involves bodily fluids and difficult raspy breathing and, you know, like, it's hard. So I guess all of this is to say, as somebody who's really working to sort of awaken public consciousness to the reality of death and dying, do you think we run the risk sometimes of romanticizing it?
Shoshana Underleider: 39:26
I think we we absolutely do. And I just wanted to say, I'm pretty sure and I can't recall the exact paper, but I think that that initial that New York Times piece you're referring to is actually been debunked. We've actually found that there are a large proportion of physicians who actually wouldn't agree that they would want to die at home. And it's actually more I want to say it's regionally based like certain groups of physicians have varied opinions on that based on where they live. Anyway, I could be misremembering.
Tyler Johnson: 39:59
So we actually have a rule on the podcast that you're not allowed to debunk the co hosts. So just wondering.
Shoshana Underleider: 40:06
Okay, I'm going to find that paper though. No, but you know, it's really interesting because I think a lot of people I used to think that and often cite that, well, if physicians, because we know better. And that's actually the reason why I funded and was involved with Extremis, the first Netflix documentary about end of life decision making in the ICU because and I still feel this way that if people do have a sense of what it's like to be in the intensive care unit and be critically ill and the conversations that take place, like they'll have a more informed understanding of what they might be signing up for and really the call to action there is we unfortunately have to be advocates for ourselves and the people that we love in these critical moments. Right. Such that if if a conversation has taken place upstream from that acute crisis where you know, that Auntie Jean or mom or sister, you know, didn't want something or wanted something different, that that needs to be brought out to light to the clinical team. Right. And I think that's so, so important. That's not to say that we can achieve that, but I think it's incredibly important, again, that those conversations, number one, take place, but that people realize that unfortunately, by default in this country, you will get very aggressive, invasive treatment unless you opt out. Right. That's something that people don't know outside of medicine. But I think getting back to your point, yeah, I mean, I think that from my perspective, certainly there's plenty of people who feel as though I don't have a home, my loved ones can't take care of me. Home is actually, you know, not all that comfortable for whatever reason, being in a hospital or some other kind of facility makes perfect sense. And it turns out we can actually offer a nice- a nicer- a better experience for them, too. But I think that we have to realize that in our culture we don't actually value the end of life experience, right? There aren't products and services and systems in place that say, you know, dying is a part of living and we should think about it in that way and really honor every human being's final days, weeks, moments of life. And if you think about the flip-side of that, when we bring new life into the world, think about the multibillion-dollar industry of of birthing, of feeding babies, of having a healthier, safer pregnancy of of all the things in and around labor and delivery that happened that we truly value as a culture and we don't do the same around end of life. And so I think while that's a it's very complex and certainly any time we delve into the health care aspects of it, it gets even more complicated. And from a health care perspective, we're not getting people into hospice early enough. Right? We know that that the majority of people spend just a handful of days on hospice before they die, when if they're eligible to receive that kind of care, and it's care that they want focused on comfort and quality of life. I don't need to tell you guys this, but, you know, it's they could potentially have months and months of it, but we just don't, you know, do a great job of of getting people there. At the very least you know I think that's that's one huge conversation that that's that's being missed.
Henry Bair: 43:49
Thank you so much for sharing that perspective. I'd like to ask you about something that may be a little bit more personal. You recently wrote about your father's diagnosis with cancer, which then led you to your own genetic testing, which in turn revealed that you were at risk for several types of cancers as well. So you previously had the clinician's perspective, but this experience has given you both a caregiver's perspective as well as a patient's perspective. Taking all of this into account. What lessons can you share with our listeners, which may include students, young clinicians and patients?
Shoshana Underleider: 44:30
Well, you know, my dad was diagnosed in June with stage four pancreatic adenocarcinoma and I think that through this period of time for which he's been been receiving chemotherapy, I realized that like- and I knew this to be true because I've seen it over and over- but that, you know, we're incredibly well resourced. I obviously am a physician. I know lots of physicians. I'm on the board of the hospital where I trained. We have all the resources at our disposal. We are well educated. We are white people in this country that sit in a place of privilege. And it is insanely hard to experience illness and to get help when we need it and to figure out how to navigate this just incredibly fragmented system of ours. And, you know, I'm just saying all that because we're in the best of circumstances and it is frickin hard. And I think that we sometimes. Well, I think we realize that's the case within medicine, but just know that we're all those of us who are patients and caregivers, it's just it's it's just really, really hard. I think, for me. You know, I'm somebody that hates uncertainty, as many as many physicians do and and scientists. And because my father's cancer is BRCA-mutated, it's great news for him because he's eligible for PARP inhibitors and potentially, you know, a clinical trial involving immunotherapy coming up in the next month or so. And we're so grateful because if that can buy him some time, you know, that's that's fantastic. But because his cancer is mutated and that that's such great news, like we're also living in this kind of in-between Liminal space of We actually don't know how long he has, right? If it was just a straight obvious, you know, for pancreatic cancer, we would. And we know that he probably has a handful of months to live and would have probably opted for hospice by now. But because we have this opportunity to prolong his life with good quality of life, we're going for that. And I think most people would. But we also now are like, well, is he going to be around, you know, to vote in the next election? Like, we have no idea. So it's very hard to wrap your head around that. And it's certainly, from a logistical perspective, hard to plan around that. And I will just say for the clinicians listening, I had no idea that BRCA can be in families that don't have a history of ovarian and breast cancer. I wasn't taught that. I certainly haven't stayed up to date in the ten years since I finished residency on oncology. It's just not what I do every day. But I will say none of my doctors, my primary care doctor and my ob gyn knew that either. So the article I wrote in Newsweek that my dad's terminal disease is likely saving my life is 100% true. We would not have known to get tested. Pancreatic cancer, melanoma, aggressive prostate cancer are also associated with BRCA. And so I'm sort of on a mission to get the word out about that and to encourage more genetic testing, because it's not very expensive. It's really it's really accurate and it's actionable information for people. And so for me, what that looks like is I had a total hysterectomy and my tubes and ovaries removed about seven weeks ago. And I'm having a preventive mastectomy with reconstruction because that's what's right for me. Certainly there's other ways to go about screening and surveillance and stuff, but it's been really life-obviously-altering in many, many ways. And I'm actually. You know, pretty grateful that I learned this and can do something to lower my risk, my lifetime risk of cancer.
Tyler Johnson: 48:49
Thank you so much for sharing that. We know that involves a lot of personal disclosure and we appreciate the vulnerability. Usually we just ask a sort of a general question. What's your advice for up and coming trainees? But in this case, I want to ask a slightly more specific version of that question, which is this one thing that so when I attend on the cancer wards at Stanford, I -One thing that I have recognized is that I have to my sadness, become somewhat inured to patients dying because it happens a lot on the inpatient cancer service, as you might imagine, which is just to say that I have to sometimes stop myself to remind myself that for early trainees, this may well be the first time they have seen a patient, or at least their patient, die. Right. And so what I would like to ask you is not just your general advice for trainees, though I'd be interested in that too, but specifically, if I'm an intern, like you were talking about your first months in the MICU if I'm an intern and I'm in the ICU and there's this patient who I've been taking care of and I and I've been so invested, I've been there early in the morning getting the numbers and just so really rooting for them and pulling for them and hoping that they're going to get through it. And then to my surprise and horror and often accompanied with a lot of guilt and and very heavy feelings, the patient dies. Like, what advice would you give to that intern who is trying specifically to process the first death of one of their own patients?
Shoshana Underleider: 50:32
I think my my advice would be it's as as hard as this is that it's okay to, like, feel how you feel. I think in medicine, we we tend to like stuff our feelings because we're in the middle of rounds or because we're looking around and nobody else is freaked out or sad about what's going on. I think it's just experiencing, you know, being present in the moment and feeling how you feel is okay, because we do. I firmly believe we need to shift the culture of medicine, you know, to to allow for that. And I my friend Jonathan Bartels, who's a nurse in Virginia, started this really cool practice called The Pause. I think they have an app and it's there's a website about it. And really the idea is that when you witness someone dying, you know, in a clinical environment, it doesn't have to be clinical. But in this case, this is for health care workers creating a little bit of a of a ritual around just taking a pause, whoever's in the room, whoever wants to participate. And this is not a religious thing at all. If if you want it to be, it can be. But this is about just honoring, honoring life and just giving it a moment to say we're here. This happened. Thank you and goodbye. Just it's just really beautiful. And I think it keeps us connected to the humanity of medicine, which I think is why most of us go into this work. But the sort of the humanity is kind of beaten out of us as we go. But I would just encourage you to stay connected to it.
Henry Bair: 52:11
On that beautiful note. We want to thank you, Shoshana, for for being with us. This was wonderful. Thank you so much for sharing your stories and your insights. And thank you for all the work that you're doing.
Tyler Johnson: 52:22
Thanks so much, Shoshana.
Shoshana Underleider: 52:23
Thank you so much for having me. This was really an honor and my pleasure to be here and meet you both.
Henry Bair: 52:31
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. Com. 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: 52:49
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: 53:04
I'm Henry Bair.
Tyler Johnson: 53:04
And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.
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LINKS
Dr. Shoshana Ungerleider is the author of “My Dad’s Terminal Cancer Diagnosis May Have Saved My Life” for Newsweek.
In this episode, we discussed The Good Place, an award-winning sitcom series about philosophy and the afterlife.
We discussed several articles and studies about whether physicians are more likely to choose to die at home than the general public. These articles include “How Doctors Die” by Ken Murray, “Association of Occupation as a Physician With Likelihood of Dying in a Hospital” by Blecker, Johnson, Altekruse, et al. and “Patients, and Doctors, Aren’t Dying at Home” by Dr. Danielle Ofri (our guest on episode 35).
Follow Dr. Ungerleider on Twitter @ShoshUMD
