#135 - BJ Miller, M.D.: How understanding death leads to a better life
Episode Stats
Length
1 hour and 54 minutes
Words per Minute
181.65233
Summary
In this episode, Dr. BJ Miller, a hospice and palliative care specialist, joins Dr. Atiyah to talk about his journey to becoming a physician, why he decided to pursue a career in hospice, and what he thinks about the hastening of death.
Transcript
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Hey everyone, welcome to the drive podcast. I'm your host, Peter Atiyah. This podcast,
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my website and my weekly newsletter all focus on the goal of translating the science of longevity
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into something accessible for everyone. Our goal is to provide the best content in health
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and wellness full stop. And we've assembled a great team of analysts to make this happen.
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If you enjoy this podcast, we've created a membership program that brings you far more
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the end of this episode, I'll explain what those benefits are. Or if you want to learn more now,
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head over to peteratiyahmd.com forward slash subscribe. Now, without further delay, here's
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today's episode. I guess this week is Dr. BJ Miller. BJ is a hospice and palliative care specialist.
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We talk a lot about what that means, but the reason I wanted to speak with BJ is I've been
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really thinking a lot about better understanding what end of life means and how understanding the
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end of life could help us better understand, frankly, what we want out of life. And by an
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amazing coincidence, BJ and I met very, very briefly many years ago in medical school,
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although I don't think he remembers it. But when I saw him again, giving a TED talk several years ago,
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I immediately realized, Hey, that's the guy I met at a party, you know, 20 some odd years ago and
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became really interested in his work and then reached back out to him and said, Hey,
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would you be interested to sit down and talk about this? And so in this discussion,
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we talk a lot about his personal story because you can't really avoid it. And frankly, his personal
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story is a big part of why he ultimately chose the life path he did, which is doing something that
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many of us, including people who go into medicine would find just too difficult to do, which is
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basically help patients die as a means to reach this culmination of their life. We get into all
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sorts of things, the difference between death and dying, the difference between palliative care and
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hospice, the differences between loss and regret, what the medical system that we're a part of is good
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at and what it's not so great at. We talk about what really happens at the end of life, how enlightened
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or transcendent is it? And he tells a number of stories that are quite moving about patients and
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also from his own life. And finally, we conclude with a discussion on both the hastening of death
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and also what he's most optimistic about, including the use of psychedelics.
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This is another one of those episodes that I think people at the surface might think, gosh,
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I don't really have an interest in that. I would encourage you to push through that. I think it's
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natural to find this topic unpalatable. And I think that's exactly why people need to listen to
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this. So without further delay, please enjoy my conversation with BJ Miller.
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Hey BJ, it's a real honor to be sitting down with you, even though we're not in person together.
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Thank you, Peter. I appreciate you having me, but I'm looking forward to this.
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Now, I don't know if you remember this. In fact, you can't have remembered this because I'm not
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memorable in the way that you are, but we've met a few times at parties in medical school.
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You went to UCSF and I went to Stanford. And I don't know if we were the same class,
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but we were pretty close. What year did you matriculate at UCSF?
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Yep. So we were the same class. And I don't recall you guys ever coming down to Palo Alto,
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but we sure as hell went up to San Francisco a lot.
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We just had friends in common and stuff like that. And so it's almost 25 years ago. And I remember
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one of the things that stood out was you had a dog, right?
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Yeah. Wow. I'm so psyched you remember him, Peter. He was a huge part of my life. I can tell you.
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Cool. So I will admit something, BJ, which is that I never had the nerve to come up to you
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and say, hey, what happened? Because it wasn't subtle, right?
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Yeah. No, it's pretty, it's pretty bleedingly obvious. Yeah.
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Yeah. So as I would learn later, your life changed shortly after Thanksgiving in 1990, right?
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And that change, which I think on the surface would sound like a change for the worse,
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maybe wasn't for the worse after all. Can you tell folks what happened that night?
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Yeah. I mean, it was a big moment in my life as you're pointing to, Peter. Yeah. I mean,
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and there's a lot to talk about it. So I'll try to just kind of parlay the basic facts and then we
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can talk about any of it. So just back from Thanksgiving holiday, and I was very happy to
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see my friends. We were all kind of that early college. We were just basically in love. We
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couldn't wait to see each other. Being away for Thanksgiving break was a bummer, really. So anyway,
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we got running back and we immediately decided to go, a handful of us would go out and have a drink
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and just run around. I was actually on my way to the computer lab to print a paper when it kind
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of got intercepted and off we ran to go have some fun. Nothing crazy. It was, we didn't go nutso,
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but we were heading to the Wawa market, which in the East coast is sort of like a 7-Eleven,
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late open all night place to get a sandwich, kind of joint chips or whatever. Anyway, so we're walking
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to the Wawa market and this is at Princeton University where there's a commuter train that runs right up
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along campus because Princeton's sort of a bedroom community for New York and Philly. And so this
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commuter train was called the Dinky of all things. It was just sitting there, non-operating hours. So
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I was just sitting there and we stumbled across it and just decided to climb on top of it, just
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relatively innocently for things we had done, but felt much stupider. But anyway, we decided to jump
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on top of it, climb it, climb a ladder, just stand up on it like you would a jungle gym or a tree or
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something. And when I got up on top of the train, I had a metal watch on and the electricity arped to
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the watch when I stood up because I got close enough to the line. And that was that. The
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electricity entered the arm, my left arm, and then ground down. And eventually there's a big explosion
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and whatever else. And that was that. I survived that, but ended up losing both legs below the knee
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and that one arm below the elbow. Very touch and go in the burn unit in Livingston, New Jersey,
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St. Barnabas Hospital for, I don't know, maybe a month or so. Then I was in there another month in
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the burn unit and then eventually out of there and into rehab and then a long process of reentering
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the world. But anyway, that was my big, the thing I call the cosmic spanking, that big, big moment that
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just came along and completely reoriented me, changed things around. Do you remember the actual
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shock or is that sort of so traumatic? A lot of times trauma patients, for example, when they're hit by cars
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or sustain a significant gunshot wound, especially if it's followed by a prolonged period in the ICU, they
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suffer some anti-grade amnesia. So they forget things in front of them, not so much behind them. But a lot of
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times that includes the actual event. So what is the last thing you remember? Do you remember actually climbing
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up on the train? I don't. No. I remember the night is all very fuzzy. I remember sort of snippets from
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the hours preceding, but I don't have any recollection of approaching the train or getting on top of it.
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This is just pieced together through stories from my friends who are with me. But the first memory I
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have around the accident itself that night, I can picture a lot of it, again, because my friends have
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told me. But my own memory really began in the hospital that night. I was taken to the local ER
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where they just did basic things that are called fasciotomies, which is, you know, with electrical
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burns, you burn from the inside out. So you've got all this heat running around in your system and it'll
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keep burning you. So they've got to vent that heat. Basically the local ER, they cut these fasciotomies
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to vent me and then stuck me in a helicopter to go to the New Jersey's one burn unit at St.
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Barnabas. I can remember being loaded into the helicopter vaguely. I was very tall. I was almost
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6'5". And I just remember the pilots, there was this awkwardly trying to get me into the cockpit
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because I was too long. So all the amputations I had were surgical. So at that night, my legs were
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burned. I still have them. So then you get to a burn unit and you're with now a team of doctors
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and nurses who have seen the worst of things. For what it's worth, just as a bizarre coincidence,
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in general surgery, which is what I went to do after medical school, you rotate through all the
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different disciplines of surgery. It's quite random. You'll spend a month on this, a month on that,
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a month on all of these different things. And my very first month of internship was in the burn
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unit. I had never done any of that during medical school. So to show up on day one at sort of the
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premier burn unit of Maryland, which basically meant it was the referral center. So if you got burned in
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Pennsylvania, you were still coming down to Hopkins. I mean, it was another world.
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You got it. I mean, it was very difficult to get used to doing dressing changes on patients and
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just seeing the amount of pain people were in when they suffered these burns. And the other thing that
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was remarkable, at least to me, was how otherwise alive people could look when they came into a burn
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unit, but yet how poor their prognosis could be based on the amount of surface area that was burned.
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We basically had actuarial tables that would say, well, he has this much of third degree and this
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much of second degree. And even though he's sitting here actually able to even communicate with us,
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this person has a very high likelihood of not surviving this injury.
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Yep. It's interesting that you say that because one of the early memories would piece together for me
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by a nurse with whom I became very close was when I landed in the bay at the burn unit.
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This was not uncommon, but apparently the techs and the team were sitting around basically taking
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wages on whether I was going to make it. It was probably based on very much the same kind of
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what you were just describing. That sounds kind of harsh, but I'm sure it wasn't. I think that was
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just, as you know, these things get depersonalized in that setting almost by necessity. It's a brutal
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setting. But anyway, we can talk more about that. But I'm in a way glad, Peter, to know that you know
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what a burn unit is like. It is another world that I've always struggled to impart to people
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what it's actually like in there. It is a wholly unnatural place. I mean, nature is completely kept
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at bay. Yes. And there's a reason that it's very separate. I mean, in small hospitals, they do what
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they can, and I'm sure they don't have dedicated burn units. But at tertiary care centers, they have
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dedicated ICUs that are exclusively for burn patients that don't take other medical or surgical
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or neuro or pediatric cases. And it's also a very special type of nurse that works there and a
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special type of doctor because everything from the, frankly, just at times the grotesque nature of the
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disfiguration of the skin, these dressing changes that we talk about doing several times per day on
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a patient, they require incredible sterility at the bedside. Frankly, in the early days, early days of
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the patient's admission, even the smell of burned tissue is a very foreign odor to people. So
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everything about it, it places, by the way, everything I've said says nothing to what the
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patient and their family must be experiencing as they're coming to grips with this. So when did your
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parents arrive? I'm sure you don't remember it, but based on the stories.
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They came almost, my poor parents, man, they got the classic in the middle of the night. They were in
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Chicago where I grew up at the time. So they get a call from New Jersey at 4 a.m. or something
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ridiculous. And basically not a lot of information, just everything was emergent and scary. And
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basically your son's here with us. He's very badly injured. Might not make it through the night. Get
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here as soon as possible. Basically one of those calls. So my parents were there as quickly as could be
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the next morning. To your point about this place. So what they've learned, burn treatment science is
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infection is very often the thing that kills people. Hence all the sterility. So someone might
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look just fine, but they're so exposed, their body's so exposed that you're so susceptible. So
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that means whoever's in your room, they're in spacesuits and whatever else. And for a while,
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I was not allowed many visitors. There were friends who would come, but they couldn't come in the
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burning it. Eventually they allowed my parents at the bedside one at a time. That was it. But it was
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really powerful, very potent visits. I remember them very well as did my parents. As you describe
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your experience as a student, as a trainee, it's not much different because it's such a foreign,
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exotic environment that works against intuition in a lot of ways. The things that touch, for example,
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something you have to avoid at all costs, smells, everything is foreign. There is just no place
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to sort of rest into a familiar. You can imagine if it was that way for you as a student trainee.
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It was certainly that way for myself and my parents. But in a way too, that foreignness,
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and by virtue of me being so undeniably vulnerable, I was not moving. I was completely at their mercy.
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In a way, it allowed me to very quickly submit to the place and to the people working there because
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I clearly had nothing approaching an option. Very quickly, I was aware of my vulnerability and
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immediately trusted that people were working on me in a way because I had to, but also as a comment of
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how skillful they were if there were. Do you remember the actual discussion you had with the
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doctors about the need for amputation? Because obviously when the fasciotomies are performed initially,
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it's with the hope of salvaging the limbs. Presumably at some point, they came to the
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realization that trying to salvage the limbs was actually going to threaten your life due to
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infection. They had to go. I've been around those discussions. Do you remember that?
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I do. I do. I do. My first memory, real vivid memory besides that helicopter moment,
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was the night before my initial amputations. The part I remember about it, which was maybe five
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or six days in, Peter, that's when I was hemodynamically stable enough. More to the point,
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the demarcation of viable tissue versus unviable tissue was a little bit more obvious. Surgeons had
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a fighting chance to remove the right amount. Dr. Mansour was the main surgeon, an amazing,
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amazing person. I remember he came in the night before and said something. All I remember is a
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conversation. And then I remember falling asleep. I fell asleep in my little room. And somehow,
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you know that feeling, Peter, where you wake up from a dream and there's a moment of reorienting
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yourself and maybe it wasn't a very pleasant dream. And you take a little second and you get your
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bearings and you go, oh, oh, it was just a dream. Oh, thank God. You know, the classic thing is people
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show up like taking an exam naked or something. So they're late for their wedding or some moment
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and you wake up and, oh, thank God that was a dream. I remember I woke up in the burning and having
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that sensation. Strange. I remember I looked around and I had this weird feeling like, oh,
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this whole amputation thing that I was just hearing about was a dream. Oh, I'm fine.
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I got to go to the bathroom. So I, in my haze, managed to extubate myself. So not an easy thing
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to do. Extubate myself, pull my central lines out of my neck, unstrap my arm from the bed.
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And all the while, I can remember this so clearly. I'm looking around my room with all these cues
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that obviously I'm not in my bedroom. But for some reason, I'm just thinking, oh, yeah, this is my room.
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I'm just going to go to the bathroom now. And I got up and out of bed eventually and started
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walking to the door with all these alarms going off in the middle of the night. Somehow,
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I don't know where the nurses were, but there was a gap there. And I started walking to the door
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just to take a leak on my crispy little feet. And the Foley catheter line ran out. And as you know,
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they're usually attached to the bed. So when that line ran out, it yanked on that Foley. And that's a
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pain that I won't soon forget. And that catheter ball was not deflated. We can explain this for your
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listeners. But anyway, I was just about to say, we're going to hit pause and explain everything
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you just said. But let's start with the extubation. So you have a tube that is in your airway and a
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machine that is breathing for you. So the act of pulling that out means you now have to breathe on
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your own, something you have not been doing for the previous week. That alone could have killed you.
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Yeah. Right. You then pulled out a bunch of central lines, which if not compressed,
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so central lines are very, very long intravenous lines that go into the main veins inside your body,
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veins that most people don't even realize they have called the vena cava, subclavian vein, etc.
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To pull those out without the appropriate protocol of compression could also lead to internal hemorrhage
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and all sorts of crazy things. You're dodging death. You're three for three on this.
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Yeah. I mean, yes. In retrospect, I smile almost with pride because it feels, it sounds so daring.
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I mean, obviously at the time I had no freaking idea what I was doing, but now it's-
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But then the thing that finally gets you is a catheter about the size of an HB pencil
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that is in your urethra up to your bladder, which stays in place with a balloon that's dilated to
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the size of a very large gumball. And said gumball prevents the catheter from ever coming out. And before
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we take these catheters out of the urethra, which is by itself unbearable, I myself have had one,
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we have to deflate the ball because trying to pull a gumball sized device out of the urethra would
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be tantamount to torture. But of course you just went ahead and through the force of walking towards
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the door, basically removed your own Foley catheter minus the balloon removal or-
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You're still alive, but all of a sudden that dream-
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Yeah. It is amazing that you're right, that you must have done this all very quickly
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to make it happen. So now you're sort of having that moment of maybe that wasn't a dream.
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Mm-hmm. I will never forget this. It was the clarity, that world, all the haze cleared up
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instantly when I felt that Foley dislodge from the bladder. But incidentally, it didn't come all
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Yeah. It was just terrifying. So I immediately fall to the floor and I'm screaming and now a
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nurse comes in. I don't know what the delay was. Incidentally, that poor nurse, we never saw her
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again. She was never signed in my room again. Poor thing. Part of her explanation, she was avoiding
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my room. She admitted in some ways because she had a son my age who looked just like me and it was
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really hard for her. Anyway, so eventually, so I'm on the floor now screaming, trying to break the
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catheter line, which is impossible. But it's the only way I could, I thought I could break the
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tension. But anyways, they came in, got me back in bed and all that stuff. And away it went. But
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to your question, Peter, it was instantaneous that I realized this wasn't a dream. And all the relief
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that I had experienced moments ago in the other direction just immediately went away. And I was very,
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very clear on where I was and what was happening to me. Instantaneously. It was a wild,
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So what kind of a mourning process did you go through postoperatively when you come out with
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Short answer is my mourning process took me a while. And my conscious mourning process was delayed because
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I, at that time, embodied the sort of absorb the American notion that no, what you do is you pick
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yourself up, you get back on the horse immediately. The less you acknowledge what's gone on, the
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better. The tougher you are, the faster you'll be functional again, et cetera. So early on, I didn't
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do any mourning, not consciously. I was kind of going the other direction, joking around, making light of
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it. And both a moment of somewhat of denial and also probably something pretty poignant too. I remember
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when I came out of that first surgery. So I didn't know that there were people, I knew my parents
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were there. And oddly, Peter, I don't know how this was possible. My parents moved into the hospital.
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Somehow they got a room in the hospital from Chicago. They lived there. All the time I was
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there. I don't know how the hell that, never heard of that, but they did. Maybe they had huge wings of
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St. Barnum's that weren't being used. I'm not sure. But I knew my parents were there. So I come out of
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the OR, come out and I'm heading, they're wheeling me back. The leg amputations were what they did
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first. And I knew whatever the case is, I had absorbed what Dr. Mansour told me the night before
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eventually. I woke up from that surgery with no surprises, but I'm wheeling back to my room.
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And as a brief moment where you're going from the OR suites back into the burn units, and you go to
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this little hallway and I come out, it was packed with people. My friends and some friends had flown
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in from Chicago. I was so moved. I had no idea that they were there. And it was just a brief
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second. There was no time to talk, but there was just a lot of love. I just remember their facial
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expressions. I was very, very moved. And then I went back into the room and I remember my mom came
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in and we were sitting and she was crying. And my mom had polio. She'd been disabled my whole life,
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most of her life. And I just remember, this is going to sound, I don't know, it was part denial
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driving it. But I just remember my thought when my mom came in was, my response to her was,
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oh, mom, well, now we have so much more in common. Now we're both disabled, almost like a cheeriness.
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I love my mom very much. We're very close. And I honestly felt like I was joining this ranks of
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folks that I always knew existed and felt very much a kinship with the disabled community by virtue of
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being close with my mother. My first response was weird kind of immediate acceptance, but I had to go
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back and it wasn't a thorough acceptance. It was where I wanted to be, but it wasn't really where
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I was. But anyway, that was my first statement. It took really weeks. It took actually my nurse
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kind of trying to work on their member time, maybe a week or two later where one of the nurses with
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whom I was very, very close, Joy Varkata poem. And Joy came in one day and she was just really
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moody with me. She was just like throwing, she was just strangely moody. And I was just sort of
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joking around. And anyway, she's like throwing bedpans around it. I was like, Joy, what the
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heck? What is, what's wrong? What are, are you okay? And she's just basically lit in me. She's like,
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I am just sick and tired of you not taking this seriously. You're just joking around. You haven't
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even cried. This is a big, big deal. You're not being real. And she just led into me. She led into
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me until I finally cried. It was the first time I'd cried. I was weeks in. It was the most magical
00:24:37.660
thing, Peter. I will never forget that one either. In part because it was like a dam had broke and so
00:24:44.060
much came pouring out and it felt so good. It felt like such a relief. I hadn't realized,
00:24:49.700
I hadn't consciously fought back tears or tried to be tough. I just thought that's what I was
00:24:54.000
supposed to be doing. And I was on otherwise on autopilot too. But what was also weird about those
00:24:59.640
tears was for the moments the tears were falling, I had really no physical pain. I've never looked
00:25:06.260
into this, but I wonder what the connection is between the act of crying, not just feeling sad,
00:25:10.940
but actually crying and anesthesia. It was a fascinating moment, but it really moved me and
00:25:17.420
it began my relationship with, began letting in that this was a bigger deal than I had managed to
00:25:23.320
let it be. I offer that to say the mourning, the grieving was very gradual. Took me a while to wake
00:25:29.860
up to my own feelings about it all. That took months and years, really. Do you think that that was
00:25:35.400
mostly a sadness and a loss that came through expectation of these are things I wanted to do
00:25:44.380
that I will no longer do and I am sad as a result of that? Or do you think it was tears from a
00:25:51.440
different sadness, a sadness that's more born of anger? Like how could this have happened? It's such
00:25:56.720
a random event. I've done far stupider things in my life. Like why was I wearing that watch? You can sort
00:26:03.260
of go through all those things. Like, do you have a sense of where you were in terms of that dam,
00:26:08.980
the floodgates opening? Yeah. Yeah. My sense is, Peter, it's a sense driven by most of how grief
00:26:15.840
materialized for me over the months and years. But my sense is for a number of reasons. I did not have
00:26:23.380
a lot of why me moments. And there's a lot to say about that. But to answer your question,
00:26:29.860
no, I think it was more like, first of all, the physical pain. I hadn't really let myself,
00:26:37.900
I had just been literally gritting my teeth. And for as vulnerable as I felt, as so exposed as I felt,
00:26:45.920
I was looking for anywhere where I could look or feel or act or present as strong. And that's the
00:26:52.200
only way I could think of, I think, was to kind of keep this stuff in. And so I think part of it was
00:26:57.260
a release around just the physical pain. And I think the rest of it, it didn't have a lot of
00:27:02.960
clarity around the object of my sorrow. But the sorrow, I really think, had to do with
00:27:09.140
embarrassment for doing this, for ending up here, putting my parents through so much pain. I could
00:27:16.240
see it in their faces. I slowly began to see what it did to friends, too, and others around me.
00:27:21.880
And it's the feeling, I think a lot of the pain, or a lot of the tears had to do with,
00:27:26.240
here I was taking so much from so many people. I was embarrassed about that and ashamed about that.
00:27:33.200
I think that was a big part of it. And I think there was also an image, I had just kind of come
00:27:39.040
into my body as a 19-year-old. And I think there was a sadness. I didn't know if I would ever have
00:27:45.600
sex again, what women were going to think of me, what my friends would think of me. I'd been around
00:27:50.300
disability my whole life, and I'd watched how cruel people could be, and the projections they
00:27:55.440
make. And I think part of it was the more tears that I knew what I was going to be walking into
00:28:00.580
with that. I think, yeah, all of those things. But low, low, low on the list, Peter, were the
00:28:06.440
why me questions. I owe a lot of that to the prep work that my mother, my family wife had set in.
00:28:12.700
It was always much more the question of why not me? If anything, I felt guilty for having
00:28:16.680
too perfect a life before that. Separate from all of this, BJ, there's another
00:28:21.680
kind of really transformative event in your life that has to do with your sister.
00:28:26.220
When did that take place? So that was 10 years later. So that was...
00:28:34.680
And I want to come back to how you got to medical school. But can you tell me a little bit about
00:28:39.520
your sister and the relationship you had with her in the 10 years that followed this,
00:28:43.880
and then ultimately her demise? It's a good segue. It's a link of... The way I grew up was
00:28:49.360
I was no stranger to pain. I was around it. And there are all sorts of reasons to feel like
00:28:56.440
that life was inherently hard. And that was something about... I felt almost a perversion
00:29:01.640
that I could feel happy ever. That almost felt wrong. I don't know how to explain it. But
00:29:07.540
part of my growing up was growing up with a sister. I have one sibling, Lisa. Lisa was four
00:29:13.660
years older than I am. Wild, brilliant, fascinating, just intense person. And our whole family life
00:29:23.160
so much centered around her and her moods and her thoughts. So I was enamored with Lisa. She was
00:29:30.780
my older sister. She seemed so smart to me. She had emotions around things that I hadn't even thought
00:29:36.980
of. And she had these developed psychological, emotional responses. I just felt like she must have
00:29:42.220
insights in the world that I just couldn't see. And she had such conviction. And she was harsh,
00:29:48.340
harsh, harsh, harsh. That conviction, older sister I wanted, I aspired to her. So I chased her moods
00:29:54.700
around. Anything she told me, I took at face value. I mean, she owned me in so many ways as her younger
00:30:00.340
brother. And she was very troubled. And part of my adulthood was coming in to realize that Lisa
00:30:07.280
wasn't just full of conviction. Lisa was also full of some other things. And so in my 20s,
00:30:13.500
here I am going to med school, I'm finally learning to have some separation from chasing my sister's
00:30:19.680
moods around. And then in December, December 1st of 2000, roughly almost exactly 10 years after my
00:30:28.500
injuries, Lisa decided to kill herself. Lisa decided to leave the planet. So yes, that was another,
00:30:36.760
one of the major, major life events for me. And that was deep into medical school. And one of the
00:30:42.580
things that precipitated my deciding to leave medicine, I was going to get out of medicine at
00:30:47.660
that point. No, I didn't know that actually. Yeah. I want to come back to this. Can we talk for a
00:30:54.580
moment though, just to make the connection of how you ended up deciding to go into medicine? Because
00:31:01.140
when you were in your freshman year at Princeton, I get the impression that medicine wasn't even on your
00:31:06.640
radar, correct? Yeah, that's right. You got it. Yep. No interest. I hadn't even crossed my mind.
00:31:12.680
Yeah. So after returning to Chicago, going through a very lengthy process of rehabilitation,
00:31:20.980
you re-enrolled at Princeton a full year later, correct?
00:31:26.380
Almost. Yeah. The following fall. So I went back in September of 1991.
00:31:30.940
1991. And you changed your major to art history. Is that also correct?
00:31:39.100
I had been there too far. That's a word. I had been studying Chinese language and was
00:31:44.980
heading for a major in East Asian studies. But when I was away, when I was in that,
00:31:50.760
you know, the burning, it's such a, it's like a torture chamber interspersed with like incredible
00:31:55.540
boredom. Like you're just so, you're so, and this is so wild. When I look back on these, I'm sorry.
00:32:02.440
I'm just a quick digression. So this was the first Gulf war was happening. It was so strange. I was
00:32:08.460
watching a war. Remember it was like a televised war. Such a wild thing. Bored stiff in horrible pain
00:32:15.600
to and from that tank room for daily debridement. So horrible pain interspersed with slight relief
00:32:22.080
and boredom. No touch with it. There's not even a window. It's such a weird thing. And I would
00:32:27.000
toggle between on the television, between watching the war and some cooking show. It was just the
00:32:33.540
strangest. I don't know why I bring that up. It was just how I spent my days. But now I forgot your
00:32:39.420
question, brother. What were you asking me about?
00:32:44.140
Oh, golly. How did I get to that? But anyway, well, I know because I'm sitting in this bed,
00:32:50.980
bored stiff. And of course, even with my little structures that were still in place that kept me
00:32:56.940
from crying or acknowledging a lot of things, of course, there was no getting around some stuff.
00:33:02.140
And I was beginning to let into my consciousness and my daily thinking, like, you know, sort of
00:33:06.760
preparing, imagining my life down the road. When am I going back to school? Will anyone want to be
00:33:12.140
friends with me? But I'm basically bottom line is I'm sitting there very much pondering the value of
00:33:19.100
my life. What am I now? Am I less of a person? Do I have less to offer the world? What will people
00:33:26.640
see in me, want in me? So basically questions of meaning and questions of identity. Who am I?
00:33:34.100
What do I do with myself now? What can I do? I found myself in that mix, just sitting there
00:33:39.860
pondering questions like the meaning of life. Not in a recreational or intellectually kind of Ivy
00:33:46.100
leaguey, write a term paper way, but in a way that was very obviously relevant and therapeutic and
00:33:52.120
practical. These existential issues became very practical. And that's where they belong,
00:33:58.280
by the way, I think. So sitting there, one of my friends and closest friend, Justin, would come
00:34:03.900
visit me at the Bernier eventually. And we found ourselves talking about art. It's this thing that
00:34:08.820
humans do. So I was looking for meaning making, what humans, how humans work with pain, how do humans
00:34:14.720
work with things they can't control? And that led me to thinking about art. Why do human beings make
00:34:20.280
art? Why do we take the material of our life and create with it and fashion something from it that
00:34:26.400
wasn't there before, but now exists thanks to us? It's kind of a stunning impulse that human beings
00:34:33.000
have. Whether you're making art that's going to hang in a museum or you're just futzing around your
00:34:36.880
house, we are a very creative species. That was lighting up for me as a very important and telling,
00:34:43.220
and that maybe, maybe the art world had something to teach me. So when I went back to college that fall,
00:34:51.000
I rejoined my class. I just had to finish the exam somewhere in the summer. And I had a free
00:34:55.480
semester. I was supposed to be in China the second semester of sophomore year anyway. I didn't have to do
00:35:00.320
much to jump back in with my class. And that was very important to me. I wanted to be back with my
00:35:05.580
buddies. That was a real driver. So anyway, I head back to Princeton, joined my class and changed my
00:35:11.820
major to art history, to studying art. And that was a really consequential decision, one I'm actually
00:35:18.100
very proud of. I've talked about it before on this show. I think it's even come up during a discussion
00:35:24.820
where someone asked, what's the best major that I would recommend for someone who wants to go into
00:35:30.400
medicine? And I don't have great insight on this, but the one thing I generally suggest is anything
00:35:35.020
other than pre-med. Because I think whether you study art history or engineering or a foreign
00:35:41.400
language and a foreign culture, you're probably going to get something out of it that you would
00:35:46.160
never get if you studied pre-med. Yet most of everything you study in pre-med, you're going to
00:35:51.260
pick up in medical school. Which is not to say that studying pre-med is not a good idea, but that's my
00:35:56.460
two cents is that the people who came in with totally different backgrounds often were people who
00:36:03.140
didn't actually plan on going into medicine, as is the case in yours. The stories are usually pretty
00:36:09.280
interesting. So when in the journey of art history, do you then realize you want to make what I think
00:36:17.560
is even probably a greater stretch or leap, which is to actually go to medicine?
00:36:23.020
Yeah. So let me first see your two cents and raise a mind. Unless we want medicine to simply be
00:36:31.600
the stuff of technicians, a technical pursuit, which of course it is in many, many ways.
00:36:37.600
I teach in med school. I haven't as much lately, but I've spent a lot of time teaching in schools
00:36:42.140
of medicine and nursing and love it, love it, love it, love it. And if we view medicine as a technical
00:36:49.100
pursuit simply, then okay, pre-med, focus, great. But the trick is of course in medicine is our job
00:36:55.960
is not just to, it's one thing to know details about molecules, how they work, but it's a very
00:37:03.500
different thing to know why it's amazing to have molecules in the first place. And if you have not
00:37:08.440
thought one way or another, it doesn't have to be art, it doesn't even have to be through school per
00:37:12.400
se, but you better find a way to, if you're going to go into the healing professions and clinical
00:37:16.500
professions, you better find a way to delve into why life is amazing and horrifying. Why is it so
00:37:27.220
hard to let go of? Why is it so hard to love life when you know it's going away? What is this all
00:37:33.560
about? In other words, questions around meaning and identity. One way or another weak physicians,
00:37:39.700
and you can see what happens in a healthcare system that is somehow has crowded those thoughts out as
00:37:45.620
somehow being irrelevant. You're left with a lot of zombies. You're left with a lot of people with
00:37:50.140
pulses, but have no idea why it's amazing to have a pulse in the first place. So anyway, I could go on
00:37:56.280
and on and on, but boy, I really, really, really love the notion of people who study humanities then
00:38:02.960
going into the healing professions. I think it's, some people see that as like a left turn, like, oh,
00:38:09.140
but I couldn't make a bigger case for art history was some of the best preparation for medical
00:38:14.600
school I could imagine. I think you're bringing up really great points, BJ. And I think medicine
00:38:19.220
needs all of the above. You need people who have probably gone incredibly deep on a very narrow
00:38:26.400
subset of science. You need people who come in with engineering backgrounds. You need people who come in
00:38:30.900
with humanities backgrounds. And I haven't, to be honest with you, paid much attention to how medical
00:38:36.380
schools are doing these days in terms of recruiting talent, what the war for talent looks like
00:38:41.960
in medical school versus business school versus law school versus other graduate schools. But I would
00:38:47.640
hope that they've figured out what you're saying and they're making adjustments in that direction.
00:38:52.940
I think they are. I know UCSF, my alma mater, has. They've really invited folks like myself. I didn't
00:38:59.500
tell any of the pre-meds at Princeton. I did all the pre-med work after college. And UCSF has purposely
00:39:05.400
attracted a lot of folks who are starting med school a little later in life, have some other life
00:39:09.440
experience, et cetera. Something of a trend there. I'm with you, right? It takes all of the above.
00:39:14.980
Medicine is also a technical pursuit. I guess even if someone wants to be a pre-med major,
00:39:19.960
take that more conventional route, my advice to them was just make sure you actually love it. Just
00:39:24.380
make sure you love the nuts and bolts so you're not just doing chemistry just as a means to the end
00:39:29.080
of medical school. You find something to study that actually cultivates you loving something.
00:39:35.380
I think that's a major, major distinction. That could be engineering. That could be art. That
00:39:41.600
Yeah. I've always felt that the history of science is also equally beautiful. And so when you're
00:39:45.840
studying physics and you're studying chemistry, to be able to study it through the lens of how
00:39:51.440
the people who discovered it went along their journey probably creates or at least fosters some
00:39:58.160
of that intellectual curiosity and passion that I think can be found across multiple disciplines.
00:40:02.840
But still, I want to get a better sense of what made you decide to take a very bold step,
00:40:08.980
which is, I think, to leave a comfort zone of you've now spent four years doing very well.
00:40:15.780
And you've got this degree in art history from one of the best schools in the country.
00:40:20.140
And you now decide to presumably go back and do a post-bac year to do a bunch of pre-med courses to
00:40:25.880
go and do something that seems about as orthogonal from that as anything. I'm sure it had a lot to do with
00:40:32.480
your experience, but can you speak specifically to what it was and how it, for the lack of a better
00:40:40.040
word, marinated over the previous four or five years?
00:40:43.700
Yeah, no, absolutely. I can track this out. So one of the things the injuries did for me,
00:40:50.360
cut to a spoiler, one of the therapeutic endeavors here, one of the ways to get through something is
00:40:54.720
in some real ways to let yourself be changed by it. I knew enough that thanks to my mother and the
00:41:01.320
disability rights movement, that the goal for me was to not get back to where I was before the
00:41:07.600
injuries. First of all, practically speaking, it wasn't possible. I wasn't going to get my old body
00:41:12.620
back. Also, why cut myself off from all those lessons and all the experiences that happened during
00:41:19.000
that period? It's not something I could forget, but nor is it something I would want to forget. It's
00:41:24.040
too dang rich. So the idea was really always, I knew versus a certain normal language and thoughts
00:41:32.480
around disability. And it's like, it's something you would want to overcome, put behind you. And I
00:41:38.220
think a lot of lay people or able-bodied people think the highest compliment that can offer a disabled
00:41:43.500
person is, oh, I look at you and I don't see disability at all. I know what they're trying to
00:41:48.820
say, and we can talk, we can open that up too, if you want to go down the road here, but trying to
00:41:54.120
say, but in a way, it's not really a compliment. I don't want people to ignore major parts of me
00:42:00.560
just to look at me. I'm not getting over these injuries every day. I'm reminded this is not
00:42:05.100
something of the past, something I live every day. So when I hear comments like that, and you just feel
00:42:09.520
like you're still aware that you're not, someone isn't really seeing all of you. That's problematic in a
00:42:13.900
number of ways. So I knew, I knew that I wanted to work with these experiences. So that was a major,
00:42:20.100
major theme. And medicine lit up as just theoretically as a way to put these experiences
00:42:26.380
to use. And the linkage between studying art and studying human endeavor and the study of medicine
00:42:32.580
was not such a big leap. The interest, the through line, the baso continuo for me was
00:42:38.700
just being very interested in human beings, human pursuits, human endeavors, and human creativity.
00:42:47.380
Art was one application of those interests and medical science was another. As I pondered what
00:42:52.760
I wanted to do, I thought, well, gosh, medicine would be interesting. If a doctor walked in to see
00:42:58.240
me in the shoes that I'm wearing now, that would affect me in a positive. This was some way I was
00:43:04.400
actively looking for an outlet where my injuries weren't something that someone would look past or
00:43:10.040
forgive, but were actually in some way, something of an advantage. And in this way, for me in medicine,
00:43:16.960
I can tell you that having this silhouette, having this body has really been an advantage in a lot of
00:43:21.900
ways. If the goal is empathizing with your patients and their families, if your goal is seeing yourself
00:43:27.680
as a fellow human being next to them, if you know or believe that's where healing happens,
00:43:32.120
then this kind of stuff, it's the best prop I've got going. I really feel for my able-bodied
00:43:38.260
clinicians who don't have some obvious source of pain and suffering that imparts to your onlookers,
00:43:44.680
to parts to your patients, that you've been through some stuff, you've scraped a barrel.
00:43:49.320
So anyway, I'm going on and on about that. But to get back to your question, that through line,
00:43:54.200
I knew I had a hunch that that would serve me in medicine just as it did in art, and that I could
00:43:58.360
apply these lessons into sort of a therapeutic application of studying perspective and meaning
00:44:05.700
making. So medicine lit up as a potential thing that I could do that would be fascinating. I could
00:44:11.120
make a living and I could exercise these lessons in a novel way. So it makes unbelievable sense,
00:44:17.460
actually. And I suspect it changed many things for you. I mean, look, if you just described yourself as
00:44:25.040
a six foot four handsome guy who goes to Princeton, you probably are a pretty ambitious guy. You're
00:44:33.620
going to go off and study foreign relations and do all sorts of cool things. And then everything kind
00:44:40.860
of gets taken away in an instant. How does that change your relationship with your own ambition or
00:44:47.960
what it means to try and fail? Had you ever failed at anything, by the way,
00:44:52.160
athletically and sort of academically? Even in the 90s, I imagine getting into Princeton was
00:44:57.260
almost impossible. Yeah, I exceeded in ways, but also so true. And I just had some green lights right
00:45:04.280
in front of me. I had this amazing education. I had some basic abilities. I could make a case for us
00:45:10.060
that I had suffered and struggled in various ways up until that point. And some things hadn't always
00:45:15.380
gone right for me. But there are such a different scale. There's such a different scale. But even as
00:45:21.620
a kid, so in some ways, no, I really hadn't experienced loss in some big way. But what I
00:45:26.600
had experienced was loss through people and others that I cared about watching post-polio syndrome take
00:45:31.900
my mother's physical function down, watching my sister struggle. So in some ways, part of my charge
00:45:38.720
as a young person was, I hated that I didn't have more wrong with me. I felt there was a mismatch.
00:45:43.620
I felt at odds with the world. I felt this pain around me, but I didn't really feel like I had my
00:45:50.040
own access to it. My problem was I didn't really have anything to complain about. I knew that life
00:45:55.520
was really, really hard for many, many people. And internally, my life was hard just imagining that.
00:46:01.560
And in some ways, getting this new body. And in some ways, I have to say, I made it such,
00:46:06.880
I cultivated this idea. But in a way, I got the body that much more mirrored how I felt inside.
00:46:14.240
Fragmented, broken, confused, unintegrated, different. In some weird ways, this body really,
00:46:21.500
the physiognomy of my body actually suited me in some real ways. I chose that. I ran with that.
00:46:28.720
It was true. But it also is a way for me to get into this body eventually and quit wishing it were
00:46:33.320
something else. By building on what this body was showing me, I knew the clever thing was I knew
00:46:40.440
what I was doing was building a case that this was the right body, that this was a good body. This is
00:46:46.420
the one for me. And then you can imagine that really cuts down on the regret and the second
00:46:53.160
guessing. And if only I had four limbs, then blah, blah, blah, blah. That's the kind of mindset I was
00:46:59.800
heading for and trying to cultivate. Now here again, brother, what did you ask me that I went
00:47:04.660
down on that tangent? No, actually, I was talking about this idea of this could have actually liberated
00:47:14.880
And I think you've articulated that very neatly. I want to come back to your sister. We all do this
00:47:21.240
when we get to medical school is we start to learn things that explain things we've seen in our past.
00:47:29.140
For example, it's the first time you would have learned, I suspect on some detail, what the polio
00:47:34.680
virus looks like and what a virus does, how it is that your mom actually came to contract this virus
00:47:41.400
and how a vaccine ultimately would go on to make sure people wouldn't get that virus. And I would
00:47:47.520
learn about the cardiovascular disease that ran so deeply in my family and really understand the
00:47:52.240
pathology of this. At some point, did you start to suspect that your sister had whatever you want
00:47:58.920
to call it, formal mental illness, or did you not think that that was the case at all? Or how did you
00:48:04.440
think about your sister once you were in medical school and you began to learn about mental health in
00:48:10.180
a somewhat formal way? Quick answer here is no, I didn't. The only time I actually let myself
00:48:16.760
do that sort of the pathological overlay was after the fact after she had died. Leading up,
00:48:23.740
it's telling. I mean, leading up to that, even through medical school, studying manic depression,
00:48:29.860
something that she was posthumously diagnosed with. Oddly, it never registered as me reading about
00:48:35.880
someone like my sister. Somehow, and I referenced this a little bit earlier, was somehow the way she was
00:48:42.780
or the hour dynamic. And it wasn't just me, it was my parents too, and her psychiatrist too. She was
00:48:49.160
a master manipulator. She could have anyone thinking exactly what she wanted them to think.
00:48:55.980
And particularly me as her little doting brother who just looked up to her.
00:49:00.600
If I absorbed anything from Lisa, it was that Lisa was right. Lisa had it right, including her angst and
00:49:07.040
her pain, that the world is a painful place. And Lisa was reflecting that. If anything, I saw Lisa was
00:49:12.660
the standard. She was right. Everyone else was wrong. But she kind of rolled with what she was
00:49:18.440
selling. I did roll with what she was selling and deeply to the point where any idea of pathologizing
00:49:24.180
her just completely bounced off my head. It didn't register as relevant to her. She was the right one
00:49:30.020
until she ended her life. And then that prompted all sorts of revisiting that thinking. Also then
00:49:38.540
eventually, you know, my parents, what they did to try to make sense of all this, they went through
00:49:42.660
her diaries with the psychiatrist. And it was in that act, I didn't join them in that, but I received
00:49:49.260
the news, and I believe it, which is she was just textbook bipolar. I mean, just outrageously textbook.
00:49:56.800
And sometimes I'd get my quitting, wanting to quit medicine did have some, this was right after Lisa
00:50:01.920
died on the list of why I want to get out of medicine. It was like, Jesus, I can't, I didn't
00:50:06.020
even see right under my nose. I'm trying to become like a healer person. I can't even acknowledge that
00:50:11.020
my sister's sick. This was demoralizing on some level, but, but I also comforted myself. She had a
00:50:16.840
shrink for better than a dozen years who didn't notice this, who didn't was, who was somehow shocked
00:50:23.220
that Lisa killed herself. Weirdly, I, I remember on the one hand here, I didn't see any of these
00:50:30.640
signals coming. And at the same time, I remember where I was when I got the news of her death. I
00:50:35.700
was with my dad in a car and my buddy, Justin, my mom called and my dad picked up in his kind of
00:50:41.840
usual sing songy way. And there was a pause. And then he immediately starts bawling.
00:50:48.820
I knew instantaneously that Lisa was gone. And when I heard it was suicide, there was not a single
00:50:55.920
cell of surprise in my body. That's just an observation. So I'm telling you two things.
00:51:01.380
On the one hand, I didn't see it coming. On the other hand, I completely saw it coming. I don't know
00:51:05.360
how to reconcile those two, but that's just the case. So you're in your last year of medical school
00:51:12.500
when this happens, you've now alluded to this twice. Were you not planning to do a residency at
00:51:17.900
this point? Or was this the event that sort of tipped you to not pursue your residency that
00:51:23.500
following summer? Well, all through med school, I just assumed, because I wasn't so enamored with
00:51:29.360
medical science per se. That was just a bag of tricks. I was interested in gaining a career
00:51:34.740
work that allowed me to continue to thinking about these things and work with others and serve
00:51:40.620
others around these ideas of identity of loss and trauma. And I just figured the best place for me
00:51:47.940
to exercise that would be in the rehab setting. So I was sort of beelining for physical medicine and
00:51:52.640
rehabilitation. So deep into medical school, UCSF didn't have a program. So I went and did an externship
00:51:58.900
somewhere, rotation elsewhere, at least. And during that, I'd already begun to apply for
00:52:04.820
residencies in rehab medicine at that point. And so then I hear the rotation, having already committed
00:52:09.920
to this field, and I hated it. The rotation was, I just really did not enjoy it for all sorts of
00:52:16.200
reasons. One, it was all mechanical, this idea of like, rehabilitation. First of all, the phrase is
00:52:21.820
problematic. Rehab, like the goal would be to get back to where you were before the injury,
00:52:26.140
which I've been saying, I just don't believe is true. It's importantly untrue. And this idea that
00:52:31.360
it was so mechanical had nothing to do with the personal transformations that happened.
00:52:35.660
And that's where I realized I was so interested. And that plus I realized as I was walking out of
00:52:40.480
patient's room, I kept hearing nurses say, look, Timmy, you can be just like BJ. He's a doctor now.
00:52:47.060
I could hear myself being served up as a poster child. And I didn't like the mechanics of the job.
00:52:53.980
I didn't want to be a poster child. Ipso facto. I was like, I got to get out of this.
00:52:59.200
And one of my promises to myself going into medical school, having learned what I had learned was,
00:53:04.900
hey, life's short, life's important, life's hard, life's beautiful. I'm not going to just
00:53:10.200
get stuck somewhere and have a sacrificial life. I know a lot of our colleagues in medicine who went
00:53:16.100
into it because their parents were doctors, and they hated it. But what else am I going to do now?
00:53:20.720
I've gone this far. Or one way or another, they just sign up, willfully sign up for a life of
00:53:26.100
misery. I knew I wasn't going to do that. So I promised myself. And at this point, another thing
00:53:31.020
I learned from the injuries, which was so critical, was the ability to, I was much less afraid now. I
00:53:35.960
was much less afraid of failure. I was much less afraid of falling. So you asked me earlier if I had
00:53:40.980
anything really go wrong before in my life. In some ways, the answer is no. I was a very frightful,
00:53:46.260
melancholy child. Sensitive, but to end up manifesting as fearful at times. Now I was
00:53:52.160
going the other direction, man. Fear, I had a totally different relationship with fear.
00:53:56.120
I saw falling as a skill. So anyway, the bottom line there was I was willing to try medicine and
00:54:02.820
willing to dump it. And in fact, it felt empowering to do so. It was a reminder that my life was bigger
00:54:08.520
than just a job choice. Anyone's life is. So there I am, deep in med school, already applying for
00:54:14.480
residency. I said, screw this. And so as I promised myself, so I called, dropped out of the match,
00:54:19.780
talked to my dean, said, hey, I'm finished. I'll graduate. But you know, I'm going to do other
00:54:25.240
things. She talked me into, she said, okay, okay, right. I had begun to be disillusioned with medicine
00:54:33.100
before my sister's death. But that was sort of the straw that brought the camel's back. As you've
00:54:38.380
referenced, I think we bring in idealism one way or another into the healing professions.
00:54:44.220
And then you have to go through this process of disillusionment where the practice of medicine
00:54:49.640
isn't necessarily jiving with the ideals that you bring into it. And that can be very stressful.
00:54:54.980
But I do think it's important for any trainee at one point or another to go through some
00:54:59.280
disillusionment. My response to that disillusionment was to get the hell out of it,
00:55:04.720
especially as I realized I didn't like rehab medicine. And again, Lisa's death was just like
00:55:10.180
proof that I'm just not, I don't want to do this and I'm not cut out for it.
00:55:13.640
But then I got talked into doing my internship that first postdoc year. And my family was in
00:55:19.800
Milwaukee at the time. I had gone away. I had left home when I was 15. And given Lisa had just died,
00:55:26.660
given I didn't know what I was doing in some ways, I said, okay, well, I'll move in with mom and dad.
00:55:32.640
We'll recongeal as a family, spend that year together. And I'll bang out my internship and
00:55:38.320
just get that done and be done and move on. But it was during that internship that I stumbled into
00:55:42.960
palliative care. And that's where everything changed again.
00:55:47.220
So PJ, what is it that you saw during your internship that both made you change your
00:55:54.880
decision leaving medicine and also concentrated or focused you on an area of medicine called
00:56:02.380
So a couple of things happened. One of the things I just sort of stumbled into this elective during my
00:56:08.840
internship, we had basically one month of an elective time, if I remember correctly,
00:56:13.960
maybe more, but I'd spent a little time with a hospice doc at one point. Actually, my best friend's
00:56:20.080
mother was involved with the hospice and she turned me on to the idea. But again, I was so hell bent on
00:56:25.300
rehab medicine, figuring that was the place for me and wasn't sure that I had anything special to
00:56:30.700
offer beyond that sort of rehab setting. But I had absorbed that hospice was simply just where people
00:56:36.500
go for the final days of life. I thought I understood what that meant. But anyway, I stumbled
00:56:42.820
into this palliative care elective at the Medical College of Wisconsin, which just happens to have
00:56:47.220
been one of the early adopters of palliative care. David Weissman, an oncologist there, had built one of
00:56:52.840
the early great palliative care programs, which just happened to be there. And on that first day,
00:56:58.820
we went and saw a patient. I watched David talk to her about code status. This was in the hospital.
00:57:06.260
This woman with heart disease, advanced heart disease. And David was trying to talk to her about
00:57:10.960
her wishes, what kind of care she wanted for and trying to impart how serious her heart condition
00:57:16.680
had become. Tricky conversations, very emotionally, psychologically loaded content,
00:57:22.840
really tricky. The zone that medicine traditionally does not handle very well.
00:57:28.020
And so I'd seen all these counterpoints. But here I'm watching this guy sit with this woman,
00:57:31.920
sits on the edge of her bed with her, just immediately this very different rapport.
00:57:36.600
He's talking to her like a human being, not hovering over her like a superior, someone who's
00:57:42.880
there to fix her. He was there as a fellow human being. And he just showed it in his body language,
00:57:49.100
and his tone, and his word choice. It was beautiful. And he said to her, and I just watched
00:57:54.360
how she responded to him. And it was remarkable. And he said something to her, he tried to get to
00:57:59.800
the code status question, said something essentially like, when you die, do you want us to help that
00:58:05.300
process along and make sure you're comfortable through that process? Or do you want us to really
00:58:10.400
fight that? You want us to go to war with that notion and do our best to pull you back?
00:58:14.880
Something along those lines. But the magic moment was him looking her in the eye and saying,
00:58:21.000
when you die, of course, as human beings, it's a very reasonable thing to say, because we all die.
00:58:27.620
It's not if, it's when. In the medical setting, that is not the way these conversations generally
00:58:33.480
work. I was so moved by watching this. And he dared to acknowledge this woman's death. And what I saw
00:58:40.120
on her face was not shock or anger, but relief that this man was talking to her plainly about
00:58:48.920
her life. And it was so gorgeous, so poignant. That moment really, really stuck with me.
00:58:55.880
And as I went home that night, I remember thinking about it. It's like, well, this is what I've been
00:59:00.160
looking for. This is, in this world, we take, in palliative care world, illness, disability, death
00:59:08.080
are normal. They're not anomalous. This field treats these life events as normal life events,
00:59:15.120
which of course they are. The starting point for palliative care is something's happening that you
00:59:20.800
can't fix, that you can't change. And that was, for me, all along, in rehab, you could see would be
00:59:28.420
similar. Like rehab, the events already happened. Something's gone wrong. Now what you do? I knew I
00:59:33.200
was interested in the now what? But here, this field was digging into all the, it's not just the
00:59:38.740
angle of the joint it was concerned with, but the angle of the thoughts and the way that we see
00:59:44.700
ourselves and the words we choose to describe our place in the world and how we either suffer for those
00:59:49.560
words or how we really confine ourselves to something more therapeutic. And it was such a craft.
00:59:56.520
It was such a stuff of words, not of a instrument. So anyway, I really was really, really moved. But
01:00:03.660
the first access that opened up was, I'm not here to fix people. I'm here to be with people as they
01:00:10.340
find their way, as they deal with things that they can't control. And that was the hope for me in so many
01:00:16.080
ways. How would you explain to someone the difference between palliative care and hospice,
01:00:20.540
which I think many people use interchangeably, but I don't think they really are interchangeable,
01:00:25.680
are they? They are not. Thank you. Thank you. Thank you. Quick public service announcement,
01:00:31.280
because it's a really big problem for a number of reasons. But palliative care is simply the
01:00:36.940
interdisciplinary pursuit of the quality of life. Within the context of serious illness,
01:00:41.940
palliative care is that mode of care, which helps you feel as well as possible,
01:00:46.820
emotionally, physically, spiritually, you name it. My job is to help you deal with the facts of your
01:00:52.920
life and to feel as well as you can. There is nothing in the definition of palliative care that
01:00:58.040
makes it that you need to be dying anytime soon. Time is not mentioned. There is death is included
01:01:03.540
in this, but it's not the focus. It's simply the pursuit of quality of life. And if you need to pose
01:01:09.400
it, like we do in medicine, if you need to have objects of your efforts, an enemy, as it were,
01:01:14.460
the thing we're after, palliative care, the thing that we treat is suffering versus disease. And
01:01:21.120
there's a lot to that. We can unpack that. But so that's palliative care. Hospice is a subset of
01:01:27.060
palliative care, which is that mode, that type of care, but reserved for the end of life, the final
01:01:32.100
months of life. So hospice really is essentially end of life care. It's palliative care that's applied
01:01:37.380
at the end of life. But that's just hospice. But palliative care, there's no mention of time. You just
01:01:42.940
have to be struggling. You just have to be interested in quality of life, not have to be
01:01:46.840
dying anytime soon. This is a huge, huge distinction because of all of our deaf folks, because they
01:01:53.140
think palliative care and end of life care or hospice are the same. No one wants to talk about
01:01:57.880
it. No one wants to face that because of all the baggage around death. So consequently, people
01:02:03.620
suffer for years where they could get a lot more support from palliative care. But because of this
01:02:09.040
misunderstanding, they don't elect palliative care because they think that's only relevant
01:02:13.420
for them if they're dying soon. And nothing could be farther from the truth. So does that make sense?
01:02:18.580
It really does, yes. And I appreciate that distinction.
01:02:22.280
What do you think it is about us as a species? I can only speak to us because other species,
01:02:27.940
I don't think, share our metacognition. But why are we in such denial about death? It's been said by
01:02:34.440
so many people. We are all terminally ill. And yet most of us, myself certainly included, don't act
01:02:40.880
that way at times. We tend to fixate on things that absolutely don't matter. For many people,
01:02:48.260
there's frank denial of this thing. It's out there, it's some sort of abstract idea, but it's certainly
01:02:53.720
nothing that warrants any attention in terms of decisions one makes today. That's really the first
01:03:00.180
question I have. And then there's other things I want to explore here with you. But what is your
01:03:03.780
take on our just inability to look at death? I think for starters, I know in my field and
01:03:10.820
elsewhere, for folks who have kind of dared to turn their attention to mortality or have been forced
01:03:15.360
to, then you look back on the rest of the world and you see a world so invested in ignoring this part
01:03:22.080
of life that it can feel a little perverse. And I think a lot of us are quick to say the world,
01:03:26.960
or Americans in particular, are in denial. And there's some truth to that for sure. But I also
01:03:33.000
think we should cut each other some slack. Just physiologically, neurohormonally, we are wired to
01:03:39.340
run away from death. Any threat to our existence, we have deep wiring that makes us fight that thing
01:03:45.960
or flee it or go limp. So we have that impulse in us. And then I think on top of that, there's as old
01:03:53.560
as human beings has been this knowledge that we die, that any adult in this world, maybe not even
01:04:00.320
just adults. One way or another, human beings eventually come to the realization that death happens,
01:04:06.420
including their own death. And I'm not sure that any other species has to live, has to walk through
01:04:13.320
life feeling that. So it is quite a predicament we humans have. It's elemental. It is at the root of the
01:04:20.420
Judeo-Christian tradition. It's a root of many religious belief systems, a lot of philosophy
01:04:26.680
of thought. It's at the root of song and artwork. I mean, this is a huge, huge subject that humans
01:04:32.320
really, really struggle to wrap their heads around. So I just want to give us plenty of breadth. And I
01:04:38.500
don't want us to be ashamed that we haven't figured out this death thing. So on top of those old threads,
01:04:44.220
modern times, the last 150 years, medical science, we're sort of a victim of our own success. Medical
01:04:52.120
science has gotten much better. It's easy to be seduced. My life has been saved by medicine.
01:04:59.080
It's easy to believe that medicine can forestall death, perhaps indefinitely. So you throw all these
01:05:05.120
things together and social cues around anti-aging this and that, and you got to stay healthy and
01:05:10.620
beautiful forever and put all that stuff together. And we've conspired to set up a pretty tricky
01:05:16.180
relationship to this piece of our nature. No harm, no foul. But I think the reason to push back on this
01:05:23.680
is A, people die much more miserable than they need to because they haven't dared to look at this thing
01:05:30.760
called death before it's too late. And because also we have a healthcare system that it's not an intuitive
01:05:36.180
thing to navigate anymore. And thanks to our technology, it's not impossible to end up on a
01:05:41.260
series of machines and that by some definition of life, you have a pulse, but that's not a life that
01:05:47.760
a lot of us want to live is hooked up to machines. So we have this weird technological moment that you
01:05:52.500
can kind of live forever by some very reduced definition of life. Anyway, there's a little bit
01:05:57.700
of a rundown why it's so dang hard to turn our attention to this. But when people do, and I'm coming to
01:06:04.740
the climax here, brother, but one of the things you learn, whether through religious and philosophical
01:06:11.360
thinking, or frankly, in clinical thinking, whether by choice or by force, once you have to actually
01:06:19.260
try to stare at this thing called mortality, this thing called death in the eye, not only do you realize
01:06:25.520
that, hey, maybe it's not so terrifying after all, and that you can do it, but it has a secondary
01:06:31.820
effect of once you come to terms with your time as precious, and that time is relatively short,
01:06:38.980
or at least not endless, it has a secondary effect of helping you really, really appreciate what you
01:06:45.200
have. The fact that it ends is what makes it precious. So there are reasons why we don't look
01:06:51.840
at death, and there are some really good reasons to help each other find a way to do so.
01:06:57.200
I think that's just such an eloquent description of what I consider to be a huge dialectical challenge,
01:07:04.140
which is the problem that I focus on, BJ, in medicine is how to live longer, how to do so
01:07:10.940
without requiring the heroics of medicine at end of life. So just as you became disillusioned with
01:07:17.440
medicine, so too did I. But it was for a slightly different reason, which was, boy, we sure do put a
01:07:24.640
staggering amount of resources and effort into things that with probably one-tenth of this effort
01:07:30.600
could have been forestalled or prevented altogether. And I didn't think I could do anything about it,
01:07:35.880
so I left for a period of time before ultimately coming back to it. But I think that what you said
01:07:41.700
is I completely agree that we can do both, right? We can do everything in our power to maximize our
01:07:50.960
lives here, just as medicine allowed you to live that day. There's a very good chance at a different
01:07:57.940
hospital under different settings you would have died 30 years ago, but you didn't. Now, you're still
01:08:04.740
going to die, just as I am, of course, and everyone listening to this is going to die. So we can do both.
01:08:10.860
We can figure out a way to live the best life possible, the longest life possible, should we choose
01:08:16.440
that to be the case? But none of that diminishes what you've said. And I think that's the part
01:08:22.400
that a lot of people don't appreciate, is that it's one or the other, and it can't be both.
01:08:28.920
Amen. You just hit on a real kind of a root cause. One of the ways we struggle so much these days is
01:08:35.280
from our structures, our constructs, our ways of thinking. And as long as we think it's either life
01:08:40.820
or death, either you love life and try everything you can do to extend it, or you love death and just
01:08:47.820
completely accept that it's going to come today, these false dichotomies are the problem. And I'm
01:08:53.920
so with you, and it's one of the reasons I'm so excited to be invited on your podcast, but it's
01:08:58.080
because our relationship with death is maybe a problem, or it's just under-realized, but if there's
01:09:04.700
a problem here, it's the false dichotomy. It's the either-or thinking when the both-and thinking is
01:09:10.340
really where it's at. So I love that you and others are trying to think through how to live
01:09:15.020
longer and live better. I love life. My relationship to death, even my acceptance of
01:09:20.900
death, is only to do with my love of life. It would be a real shame of a shortcut that if in
01:09:27.500
order to prepare yourself for the inevitability of death, you somehow stopped loving life. You
01:09:33.720
somehow welcomed depression, so therefore you wouldn't love life so that much, so therefore you're
01:09:39.860
ready to die because life kind of sucks. It could be so, so much better than that. And if we can find
01:09:45.740
a way to include death into our view of reality, like I don't love death. I love reality, and reality
01:09:52.720
happens to include death. Therefore, I'll deal with death. I'm in no way concerted around it. I'm in no
01:09:59.780
way incentivized to make death happen. Again, I appreciate you having this conversation with me. I think
01:10:06.000
there's a lot to be learned by pushing past the either or of this.
01:10:10.400
You've spent more time with people who are closer to death than almost anybody listening to this,
01:10:17.420
certainly. You're in a profession that very few people go into. As you've pointed out,
01:10:22.880
there are many reasons for that. Do you get the sense that when someone is at the end of their life,
01:10:30.120
they are more afraid of death in the sense of being gone or the act of dying and presumably what
01:10:40.960
the actual mechanism of death and or suffering is? Yeah, it's a really great distinction,
01:10:47.240
a very helpful one clinically. Presentation may be someone's freaked out about dying or some of
01:10:52.680
existential anxiety. But of course, as is the case with these things, it pays to look a little bit more
01:10:58.540
closely and tease some things out here. One of the major things to tease out is, are you afraid
01:11:03.760
of the dying process, like you're mentioning here, the suffering you imply that must happen during the
01:11:10.220
dying process? Is that what you're picturing? Therefore, is that the source of your anxiety?
01:11:14.640
Or are you really afraid to be dead? Whether your belief system suggests there's a judgment day and a
01:11:20.460
reckoning, perhaps a hell, perhaps who knows what? Are you afraid of what may be coming next?
01:11:26.780
Are you afraid to be gone? Are you afraid to miss out? Does it freak you out that the world will go
01:11:33.020
on without you? A major pull here or a major divide, crossroads, let's say, is are you afraid of dying or
01:11:39.640
are you afraid of being dead? The former, one of the reasons to tease this out is the former afraid of
01:11:45.500
dying. Well, we know a fair amount about that. There's physiology to mark. There are medications to
01:11:51.680
help. There are ways to help a body come down for a gentle landing. As I say, there's no need to be
01:11:58.160
miserable and in pain at the end of life. For the most part, we can do a lot with medications. We can
01:12:02.340
do a lot to ease the suffering at the end of life and the dying process. So the answer, if that's your
01:12:08.040
fear, then the answer is reassurance. If your concern is being dead, well, I don't have answers for
01:12:14.220
you, but I can, as a fellow traveler, I can accompany you there. We can think about that together.
01:12:19.200
We can talk about it. And then we can make a life that responds to that big question.
01:12:24.580
So if you're afraid of, your belief system has you afraid of a judgment day, well, let that spur you
01:12:29.240
to behave a little differently in the time you have left. Or let that help you wade into non-duality.
01:12:36.100
Let that help you wade into the world beyond yourself. That's my favorite response. If anyone's
01:12:41.320
interested in living forever, my favorite means to living forever is to think about the world beyond
01:12:47.180
yourself, invest yourself in the world beyond yourself. So when your self dies, that thing you
01:12:52.500
love keeps going. Anyway, this is where it gets really, really fascinating, the relationship between
01:12:57.660
self and other and what to do about that. Religious thinking, spiritual pursuits, this is what can open
01:13:04.480
up when you admit that you're freaked out to be dead.
01:13:07.920
It's such an interesting way you explain the idea of, again, for me, it's very clearly the
01:13:15.300
latter, not the former. And I guess that's just because I have the luxury of medical training
01:13:19.200
and I understand where and when one can draw the line for themselves with respect to what
01:13:25.800
measures are taken, how heroically they are, and obviously the power of medicine to greatly
01:13:30.540
reduce the suffering. But it's this other piece of missing your family, missing out on future
01:13:38.700
generations, leaving behind people you love. To me, those are the hardest things. And of course,
01:13:44.820
your point is you can live through those things, but you have to do something about it. It doesn't
01:13:50.180
happen automatically. You have to make the investment. And the irony is the time to do that
01:13:55.460
is while we're alive. Amen. You just gave me chills. You just completed the circle. Yep.
01:14:01.660
Which almost suggests that palliative care needs to begin much earlier in life.
01:14:06.600
Amen. Which is why it's such a shame that we forestall and keep it at bay when it's this
01:14:11.180
thing that can help us so, so much, whether actually a palliative care referral or a palliative
01:14:16.680
care mindset. But one way or another, finding our way into the subject while we've got plenty
01:14:21.160
of road in front of us is absolutely the right, best way.
01:14:25.460
You know, it seems that there's a continuum where you have life, you have acute illnesses,
01:14:32.100
more life, acute illnesses, chronic illnesses, life, and death. The hospital and the entire
01:14:40.220
medical system is really only geared to treat with the acute problems. It has virtually no tool
01:14:49.140
dealing with life or even chronic conditions. And certainly not death. I don't want to get into
01:14:56.120
the why is that the case. We can sit here and debate about incentives all day long. I think
01:15:01.900
it's straightforward. I mean, I think we understand that the incentives are such that reimbursement
01:15:08.120
follows the treatment of acute conditions and to some extent chronic conditions. I guess the more
01:15:14.040
relevant question is, what would have to change to realign the focus of resources to make it such
01:15:22.860
that medicine could be more about helping people live and then helping them die when that time comes?
01:15:30.900
As a part and parcel of helping them live, then relate those two things. So I think a couple answers
01:15:36.560
to your question. I think one is in a big office somewhere at HHS when they're trying to redesign
01:15:43.720
a healthcare system and even redraft a mission statement. I would challenge HHS, I mean, to read
01:15:50.060
the definition of palliative care and tell me why the definition of palliative care isn't the mission of
01:15:54.080
all of healthcare. So one answer to your question is, you can see that both the strengths of the
01:16:00.040
healthcare system and the trouble that comes from it is a design flaw. Because you and I both know
01:16:04.880
healthcare is littered with people who really, really care and are trained to the hilt. And yet
01:16:10.820
the care we're able to meet out too often falls short. I don't think the problem is the people.
01:16:16.820
I think the problem is there's a design flaw. And for my money, the design flaw has to do with the
01:16:21.480
system is focused on disease, not on the people dealing with disease. And the second you make it
01:16:27.680
about the person living with the disease, not the disease itself, well, you've welcomed all sorts of
01:16:34.160
things into the mix beyond just their physiology and anatomy. You've welcomed their social, emotional
01:16:38.840
and spiritual lives into the mix. You've also welcomed your humanness into the mix as being
01:16:44.920
relevant, you as a clinician being relevant beyond just your technical skills, which will push back
01:16:50.800
on burnout for one thing. You've also made yourself in service of a human condition, which means for us
01:16:56.660
clinicians, the expectation management, we're not expected to work miracles. We know that it's
01:17:02.800
someday everyone's going to die and that that's not a failure for us. The person didn't succumb to
01:17:08.180
the disease and we doctors didn't fail to make them live forever. Once we align healthcare with
01:17:15.380
the human condition and we're serving human beings, so much of the trouble will work itself out because
01:17:21.740
we will be designed around the right thing. So that's one answer to your question. I think it's that
01:17:27.540
simple and that hard on some level. And then medical, of course, medical training would have to follow
01:17:31.660
suit and revisit how we think about these things. I mean, for example, think about your medical school
01:17:36.260
training, Peter. 100% of your patients die. Any rotation that you ever go through, no condition
01:17:42.280
befalls 100% of your patients. But 100% of our patients suffer. 100% of our patients die. And given that,
01:17:50.980
wouldn't you think that a responsible medical school curriculum, that we would start and end,
01:17:55.620
day one and the last day would be around conversations like we're having now. The
01:17:59.800
palliative care would not need to be a specialty. It would be baked in to how all of medicine works.
01:18:05.580
So for my money, that's a major thing that needs to happen. Policy will flow, et cetera.
01:18:10.500
I also think to make that happen and to not wait for that happen, that we human beings,
01:18:17.760
we people, irrespective of our professions, need to kind of come together as a society and to take
01:18:24.280
these issues on, especially right now when we're all so polarized and so divided and so aware about
01:18:29.780
the things that we don't have in common with each other. What a perfect time to revisit where we
01:18:35.000
actually do have so much in common. And where we do have so much in common revolves around everything
01:18:40.100
we're talking about right now. Black, white, rich, poor, young, old, I don't care. These issues affect
01:18:46.000
all of us. This is a genuine way for us to work on the points in common. So we can make political
01:18:52.580
comments about why now is right for that. The healthcare system itself can't keep doing what
01:18:57.620
it's doing and can't keep death the enemy because it's going to lose that war again and again and
01:19:03.640
again. And one way you can keep score on that is just cost. Yep. Cost alone is a metric by which
01:19:10.380
we're losing. Healthcare is obviously one of two things that will either bankrupt the United States
01:19:17.200
if they can't print their way out of it or create sort of seismic economic shifts. And I do think
01:19:23.040
that part of it is, as you said, we've taken the wrong strategy in a war that probably ought to be
01:19:29.480
deemed more of a truce than put our resources in the wrong place. Can I ask you a question on that
01:19:34.840
though? Yeah, yeah. Why would you say that we are so focused on acute care and not on chronic care?
01:19:42.380
If most everybody is going to die of most of chronic conditions, et cetera? I should say, I think we do
01:19:47.980
focus a lot on chronic care. I just don't think we're good at it. So what I meant to say was, I think
01:19:52.920
where medicine is very good is on acute care. And I think where medicine is really bad is on chronic
01:19:59.080
care. And I think those are the two things it works on. It has nothing to do with sort of
01:20:04.540
healthy life to prevent acute or chronic issues. And it has nothing to do with death. So that's
01:20:11.080
sort of, yeah, just thanks for asking me to clarify that. But yes, I think we disproportionately focus
01:20:15.260
on chronic despite our relative lack of success with it. Why do we keep doing that? Do you have a
01:20:21.240
sense? Well, I think in some cases, we don't know what to do to prevent the condition. So certain
01:20:27.480
conditions never show up as acute. Cancer does not show up acutely. I shouldn't say that. It kind of
01:20:34.160
does, but it doesn't really fall under the rubric of acute care medicine the way appendicitis does.
01:20:38.800
But we don't really have a great sense of cancer. You know, we know smoking and obesity are the two
01:20:45.160
greatest risk factors for it. But there's many other risk factors, including chance that we
01:20:50.640
probably don't understand. And even the ones that we do understand, like obesity, we don't really have
01:20:57.200
the infrastructure to help with prevention. So you talked about how in medical school, we didn't have
01:21:03.680
a single course on dying. We also didn't have a single course on nutrition or exercise or stress
01:21:11.980
management or the psychology of eating and our relationship to food and how you can help patients
01:21:17.800
make better choices with nutrition and things like that. So I don't buy the narrative that we have an
01:21:22.900
obesity crisis just because sort of people are fat, dumb, and lazy. I think we live in a toxic
01:21:27.860
food environment and we don't have a healthcare system that's really geared to help people out of
01:21:33.180
it because frankly, physicians aren't compensated to do that. You just don't have the billable structure
01:21:39.520
in which you can do these things. So instead, I think we focus on where our tools are and our tools
01:21:46.620
are drugs. Drugs become a good tool to use in a chronic condition setting.
01:21:53.520
Righto. I think I'd add to that, maybe encapsulate this list three ways. One is the design flaw that
01:21:59.420
we're the phobic and we see ourselves as victors when we cure something, when we fix something.
01:22:05.880
So chronic illness by definition is something that we can't fix. So I think it presents us with a sense
01:22:12.400
of failure, which I think is an emotional barrier to developing it further. That's one big piece of
01:22:18.840
the design flaw. I think a second big piece of the design flaw is the way the busyness of medicine
01:22:23.260
goes. We are left to see medicine as a series of transactions, which in acute care, it makes a lot
01:22:30.300
more sense. In chronic care, it becomes part of the experience. You're not kicking this thing out of the
01:22:36.180
body. You've got to learn to live with it. So illness and health becomes protracted over time and
01:22:41.320
therefore becomes an experience. But we're wired for transactions. We don't have the systems and
01:22:47.080
structures in place to be cultivating experiences together with our patients. That's the second
01:22:51.880
thing. And I think the third thing is this reimbursement and we are incentivized away from
01:22:57.260
thinking about care over time. So anyway, I just want to complete that question for both of us. I think
01:23:02.260
that's why we're where we're at. Yeah, I appreciate that structure that you've put to it. I want to ask you
01:23:08.720
about patients that you interact with during hospice. So these are now going to be the patients
01:23:14.560
who are probably in the final months of their life. And that could be cancer is obviously a very
01:23:21.360
common pathway that you'll interact with hospice patients. Is that the most common proximate cause
01:23:26.900
of death for hospice patients in the United States? Cancer? Yes. No, it is no longer the majority.
01:23:32.400
Until recently, it's less than 50% now. Progressive neurological illnesses are on the rise,
01:23:37.440
cardiovascular, organ failure. But yeah, fewer than 50% of deaths. The hospice deaths are cancer
01:23:44.000
at this point. What do patients say most to you? When I was in medical school, I did a stint at the
01:23:51.120
National Cancer Institute. And then I went back there for my formal training fellowship. And people that
01:23:57.820
came to the NCI to where I was, and I suspect to elsewhere in the NCI, were generally patients who had
01:24:03.980
progressed through all forms of treatment, all standard treatments. So they had metastatic disease
01:24:08.580
that had failed to respond to any form of treatment. So therefore, they were at the NCI
01:24:13.120
for experimental treatment. And at least for the type of cancer we worked on, the survival was between
01:24:18.700
10 and 20%, meaning 80 to 90% of the people we met were going to die very soon, within six months,
01:24:25.660
typically. I remember obviously feeling very attached to many of them and also spending time with them
01:24:31.540
and asking them questions like, what do they wish they could do? How do they want to spend this time
01:24:37.120
that they have left? And sometimes they would share regrets. And I always remember thinking,
01:24:41.960
I wish I could write a book about this, just interviewing people like this. But it felt,
01:24:47.060
it didn't feel right to me. It was one of those things that just felt like it should be shared,
01:24:50.840
but I wouldn't know how to share it. I suspect you've had more of those discussions than you can
01:24:55.860
remember. And I wonder what things you've learned from them.
01:24:59.820
These vicarious deathbed moments, I have a lot of them. I think a lot of us in this field,
01:25:04.300
and maybe in medicine general, like to say how privileged we are to be in this position,
01:25:08.500
how lucky we are to have our patients let us in to these very poignant moments. It's so intimate.
01:25:15.260
So yeah, there's a lot to be said for those moments, including your wanting to protect those
01:25:19.120
moments and not necessarily ram them into a book, although there I'm sure is a way to do that
01:25:23.540
skillfully. The world could benefit from it. But the regrets that pop in that I see at the end of
01:25:30.160
life, the conventional ones are, sure, you hear people say things like, I wish I had spent more
01:25:34.900
time with my family than at the office, things like that. Yeah, sure, that comes up. But in a way,
01:25:40.900
by the time someone's actually in their deathbed, and again, these days, most of us dying from chronic
01:25:46.440
illnesses, that means we have some protracted period of time to think about our death specifically.
01:25:51.700
We will be introduced to the thing that will end our life months or years in advance. And so by the
01:25:57.660
time those folks get around to their end of their life, they're beyond the sort of pat regrets.
01:26:02.360
They shouldn't have worked so much, for example. Oftentimes, if they're regretting anything,
01:26:07.200
they're hanging on to anything, including regrets, it's more likely, I wish I had loved,
01:26:12.660
dared to love more. I wish I hadn't been so afraid. I wish I had just let myself be myself.
01:26:19.200
I wish I hadn't been so hard on myself or criticized myself. Those regrets, they all have something to
01:26:24.940
do in common. And the commonality is, it's sort of like, oftentimes, a common pathway is they wish
01:26:30.960
they had let themselves come to terms with death earlier in their lives, because it would have
01:26:35.720
changed the decisions they made. I think one of the things that people come to realize on their
01:26:41.400
deathbed, and one of the things that I saw getting close to my own was really grasping it in our guts
01:26:48.420
that death is coming no matter what we do. Even in your work, promoting a longer life, as you said
01:26:55.100
earlier, doesn't mean that death isn't still coming. It's coming later. Given that, this is the freedom
01:27:00.800
that comes from reckoning with death, which is, if, okay, you're telling me that no matter what I do,
01:27:07.160
if I'm a good person, a bad person, I eat my veggies, I don't eat my veggies, I smoke, I don't
01:27:12.240
smoke, whatever it is, either way, if I'm going down, eventually, in other words, if failure is in
01:27:19.360
this way, quote unquote, failure is guaranteed, then in some ways, the pressure's off, like the pressure's
01:27:25.660
on for me to take my life seriously. But the pressure's off for me to get everything just perfect.
01:27:31.640
Like there's this biphasic effect that I see in myself and some of my patients, which is
01:27:37.200
they see the grip that fear has had on them, distraction is done to them, and they realize
01:27:45.780
that no, man, the only thing I have to lose is wasting my time. So I'm not going to waste my time.
01:27:52.580
I'm going to take this stuff seriously. I'm going to say what I want to say to people. I'm going to do
01:27:56.520
what I want to do. Because if failure is guaranteed, then I'm no longer doesn't make much sense to be
01:28:01.740
afraid of failure anymore, or not be limited by it, because I'm going to fall either way. So
01:28:06.700
might as well try. So I have the death gives me the reason to try, and gives me the reason or the
01:28:12.160
way of forgiving myself for quote unquote failing. So it really in this way can be a real liberating
01:28:18.760
force. And I see people grok that and the regrets have something to do with not coming to that place
01:28:24.580
sooner. You presumably encounter patients who have the sort of proverbial dying wish,
01:28:33.720
never saw the Grand Canyon and I really want to go and see it, never seen the Mona Lisa and I want
01:28:38.740
to see it, or I've never taken this vacation with my family. How much of your work is trying to help
01:28:46.180
patients navigate those wishes medically? For example, is someone strong enough to physically go
01:28:52.740
to the Grand Canyon? And can you put in a last ditch heroic effect to get them there? I mean,
01:29:01.000
Some. I'm involved with an organization called the Dream Foundation out of Santa Barbara. And what
01:29:05.280
they do for a living as an organization is help make those trips to the Grand Canyon or whatever
01:29:09.720
those final wishes actually happen for adults in this country. It's beautiful. And I have been
01:29:15.460
engaged in some of that with some patients, whether a handful of occasions where someone was here who
01:29:21.520
may have lived here for a long time, but grew up elsewhere and wanted to get home as it were back to
01:29:26.620
the Philippines or back to somewhere else and helping this sort of one last trip happen. I've been
01:29:32.840
involved with that a lot. I've been involved with some bedside weddings in a hospital just before
01:29:37.080
someone died. I've been involved with some trips done to the Grand Canyon. So some of that,
01:29:42.660
that is true. Some of my job, especially if I can be engaged with someone soon enough while there's
01:29:48.060
still energy and time to work with, then making those sort of last wishes happen is great. It's
01:29:54.740
fun. It's great work. It's powerful. It's delightful. And it's stunning. But I will say, and so I do some
01:30:01.440
of that. But for whatever reason, I'm more engaged with people around letting go of that wish
01:30:11.020
or that need to go see the Grand Canyon or whatever it may be of letting go of the things that they're
01:30:18.180
not going to be able to do, or at least grokking that fact. So yes, sometimes the response is to
01:30:24.980
mobilize energy to do that thing. I'd say more often and right alongside that wish is also helping them
01:30:31.940
see the world and see themselves in the world in such a way that they can let go of those things that
01:30:38.680
they never got to because they realize the things that they're not going to get to is a very long
01:30:44.780
list. And on a developmental level, you've got to find a way to come to terms with all the things
01:30:51.200
you're not going to get to do. So that's where I spend a lot of my time. Movies lead us to believe
01:30:57.620
that people become enlightened and hyper-transcendent at the end of life. But my experience with
01:31:05.900
patients at the end of their lives is that oftentimes they're so heavily medicated that
01:31:12.080
they're not really even able to communicate much with their loved ones. And that's the price we'll
01:31:17.200
pay to keep them comfortable. Especially patients with metastatic cancer, the pain would be so
01:31:21.900
debilitating. It would be inhumane to let them suffer without those medications. And frankly,
01:31:28.380
in the circumstances when we're lucky enough to do so, we can get expressed direction from the
01:31:36.080
patients before they get there that, hey, I don't want to suffer. And I don't want a breathing tube
01:31:41.040
put into my chest. I don't want to be intubated. And I don't want you to do chest compressions on me
01:31:45.620
when my heart stops. I just want enough medicine to be comfortable. And so you don't have these sort of
01:31:52.380
diving into a person's soul in the last day of their life kind of thing. Is that your experience
01:31:58.120
also? Absolutely, it is. There are exceptions, but not many. The last day or two of life is not
01:32:04.800
necessarily the greatest time to be digging into someone's soul. And I will say, you're right about
01:32:10.720
medications as a big piece of this. But I will also say, just for your listeners, a refinement here,
01:32:15.920
again, pushing on the either or kind of thinking. It's not either take meds and be comfortable
01:32:21.100
or don't take meds and be lucid. Intractable pain is a great route to delirium. And even if you're
01:32:28.400
not delirious, trying to have an exchange with someone when your body is in absolute agony is
01:32:33.500
a pretty quixotic experience. I will say that another plug for a pound of care is with a very
01:32:39.420
expert and judicial use of pain medications, where we can often thread a needle and get someone
01:32:44.040
comfortable enough, but not so overly medicated that they can't interact. But just want to name that
01:32:49.840
refinement a little bit. Either way, Peter, your point's still taken. The very, very final hours
01:32:55.880
of life, you're not generally reviewing much. You're not having big philosophical conversations
01:33:00.860
at that point. In so many ways, whether by medication or force of the disease, it's too late.
01:33:06.240
Which I think speaks to what you said earlier, that there really is no time like the present to say
01:33:11.460
what it is you want to say to people who matter. It's not the movie where your final breath
01:33:17.200
is asking for forgiveness or telling somebody you forgive them or that you love them.
01:33:24.580
That's very unlikely to happen, as is anything sort of cleanly, like closure. I love pointing
01:33:30.700
this out to folks. One of the things in my world and in part of care world, one of the things you
01:33:34.920
want to forestall with knowing so much pain's coming is you want to forestall the avoidable
01:33:39.260
regrets and avoidable pains. But you're not necessarily going to get there in your final breath.
01:33:45.180
Tell me the story about Randy Sloan. How did you meet him?
01:33:49.780
Randy was a beautiful young man. So I met Randy, he worked at a motorcycle shop.
01:33:55.340
So when I first met Randy, one of my wishes for myself, once I became an amputee, was to get
01:34:00.260
back on a motorcycle at some point. I've always loved biking. I'd always wanted to get on a
01:34:05.360
motorcycle. Every once in a while, I was swinging through a motorcycle shop and see if there was any
01:34:09.800
way to convert a bike. Every time I walked in there, I couldn't get anyone to take it on. I
01:34:15.260
think they all just freaked out like, no way, dude. We're not putting you on a death machine.
01:34:19.820
Never. I didn't try that hard, but I never could get anyone really interested in.
01:34:23.040
One day, I walked into a place called Scooteria West here in San Francisco and just met a wholly
01:34:29.220
different energy. These guys were actually interested in trying to make it happen.
01:34:35.240
saw it as a creative exercise. That's exactly the spirit you need. Randy was the mechanic who
01:34:43.120
put his hand up as wanting to help make this happen. Randy, he was a bike mechanic. He took my
01:34:49.320
bike and he managed to figure out a way for me to operate it with just one hand by a series of
01:34:55.480
modifications. He helped make this dream come true for me. It was beautiful for both of us. He loved
01:35:03.280
making it happen, and I sure loved that he did. Then we had this gorgeous, teary moment when I
01:35:10.140
picked up the bike and rode off in the sunset. It was just a beautiful but time-limited interaction
01:35:17.520
with Randy. Then not that much longer, I can't remember now, months or maybe a year later. Randy
01:35:24.800
was in his mid-20s, by the way. Randy ended up, somehow his mother reached me and let me know that
01:35:30.680
Randy was in the hospital and something really big time was going wrong. Randy and I had remembered
01:35:35.700
each other because we were both moved by this story. His mom reached out and he knew I was a
01:35:40.500
doctor. Blah, blah, blah. Eventually, I got to Randy's bedside. Randy had been walking up a hill in San
01:35:46.760
Francisco, found himself a little out of breath, went to urgent care. They took an x-ray and he had
01:35:51.600
turned out to have mesothelioma. Which is essentially unheard of in someone in their 20s. This is a cancer that
01:35:59.840
is almost exclusively associated with long-term asbestos exposure in elderly folks. I don't
01:36:06.860
know enough about motorcycles to know if there was asbestos in them, but even if there was, you'd
01:36:11.140
think this is something that would still be 40 years later. You're right. Total freakish. Even if
01:36:17.640
you had had exposure, it's rare to find exposed to asbestos these days, much rarer. At that age,
01:36:24.080
you just don't have even time to develop the cancer. It takes a while after exposure. Just a real
01:36:29.080
mystery how this young man came down with widely metastatic mesothelioma. Even at the time of
01:36:34.320
diagnosis, scans revealed it was in his brainstem. He's one of these guys who went from walking,
01:36:38.860
talking to that day was in the hospital on death's door and people scurrying around trying to make a
01:36:45.540
plan what to do. I met him. I walked in that situation. By the time I even got to the hospital,
01:36:50.720
he had had a dose of whole brain radiation because brainstem lesion was very precarious.
01:36:58.000
They needed immediate care. He had already been radiated within hours. I walked into a situation.
01:37:05.360
Here's a young man trying to deal with this diagnosis, come to terms with it, and all that
01:37:09.680
it meant. It meant that his life was measured in weeks at that point, right from the time of
01:37:13.900
diagnosis. I became his palliative care doctor. We were together for the rest of the time. I saw him
01:37:21.260
into, at that point, I was working at Zen Hospice Project in San Francisco. He moved in there with
01:37:26.380
us and he played his life out with us. It was an amazing experience. I think one of the most amazing
01:37:31.980
things about it, besides the medical mesothelioma and this young man, blah, blah, blah, the really
01:37:36.880
interesting stuff was how Randy responded to this diagnosis. He and his mother and I were all,
01:37:43.300
it just didn't make sense. It was too soon. We were all gearing up to think that somehow
01:37:47.380
treatment was going to help him. It was a sober conversation. There was nothing that was going
01:37:52.140
to help him at this point, except for love. That one dose of whole brain radiation really threw him
01:37:57.520
for a loop. I'm trying to talk to him about the fact, trying to bridge him to the point to the
01:38:02.860
realization that he has no good cancer fighting options. You're watching this guy's world shrink
01:38:09.060
miserably by the second. To find a way out of this tailspin and to find a way forward,
01:38:16.420
we had our dutiful kind of pad of care conversation, which included a question in there eventually about
01:38:22.040
what was really important to him? What about him that he want to protect as his body was falling
01:38:28.720
apart? What did he love most about himself? Somehow the question to Randy became, what are you most proud
01:38:35.580
of in yourself? As a young man in development, it seemed like an important question. His answer
01:38:40.960
was immediate. His answer was, I want everybody I ever come into contact know that I love them.
01:38:46.100
He answered the question immediately. It was remarkable coming out of a 27-year-old bike mechanic.
01:38:52.620
There it was. I said, okay, we need to keep you as comfortable and conscious as possible for what
01:38:58.100
time you have and be in a position that your friends and people can visit you. That meant,
01:39:03.640
let's get you in the hospice house out of your teeny apartment, walk-up apartment where you have three
01:39:08.480
roommates. Let's get you into this hospice house. Let's get you out of the charade of treatment.
01:39:13.580
Let's treat your symptoms and open up your door and get as many people in here as you want.
01:39:18.740
That's what we did. He just had a steady stream of visitors. He just basically became this radiant
01:39:24.460
beam of love for what time he had and just made sure to love as many people as he humanly could.
01:39:30.660
And with that, his mother and his stepfather came out and got married at the hospice house
01:39:37.340
around the time he died. He got in the bay one more time for a swim. He got to be with his dog
01:39:44.700
and he let everyone know what Randy meant was love. And that became his legacy. And he died smiling.
01:39:52.000
And quickly, this all transpired over what felt like hours.
01:39:57.380
What role does euthanasia play? I'm ashamed to admit I'm a little bit ignorant about the legality
01:40:02.260
of it state by state. Obviously, I know that Oregon is a state where it's legal. How many states in the
01:40:08.660
U.S. have legalized euthanasia or some form of physician-assisted suicide?
01:40:12.380
I believe the number is now nine. I have to double check, but it's unfurling as we speak.
01:40:18.920
There's efforts going on in every state house. But I'm pretty sure the number is nine. The first
01:40:23.680
was Oregon in 97, California in 2016, and others have followed suit. Montana, Oregon, Colorado,
01:40:31.980
California, D.C., others that I can't remember right now. It's coming slowly but surely state by state.
01:40:39.740
Has it demonstrably changed the practice of hospice or palliative care? Or is it almost moot because
01:40:49.280
so much of threading that needle as you described it, effectively, it doesn't happen maybe in as
01:40:57.940
dramatic a fashion. But in the end of life care that you're discussing, for example, in the case of
01:41:03.700
someone like Randy, if Randy had said, let's say a few weeks sooner, I want to go down the path of
01:41:11.860
euthanasia, what would have been different than what he ultimately ended up doing at Zen Hospice?
01:41:17.480
There was a moment there I could imagine he would have really elected it. The world was falling apart
01:41:21.800
too quickly. It was too painful for a little while there for Randy to see straight. The process,
01:41:28.580
we can talk, is a little bit wonky. There's a two-week wait. You need to have two physicians. You need to
01:41:32.660
write a letter. They're fail-safes. Because what the state wants to avoid is making it too easy for
01:41:38.740
people to do something that they otherwise might regret. Because I think many of us have moments
01:41:43.140
where we just as soon get off the planet, especially when we're dealing with something
01:41:46.820
like a terminal diagnosis. It's a funny thing where life's ending soon. Some folks have this
01:41:52.700
response, okay, I'm dying. So now that I realize I'm dying, well, now I can't die soon enough.
01:41:59.060
It's almost like once you pierce the veil of indefinite life, which people really long for,
01:42:04.560
on some level think they long for, then all of a sudden they're terminal and then they can't die
01:42:08.400
soon enough. It's sort of a final act of control and a bit of an F you to death. Well, you think
01:42:14.740
you're inevitable. I'll show you. It's the quit before getting fired impulse in some ways.
01:42:20.940
There are other ways. There are many things that drive the impulse, but that's just sort of a side note.
01:42:24.740
But to answer your question, if Randy had enacted this procedure and ended his life, hastened his
01:42:31.040
death before nature otherwise would have had it, well, Randy would have died sooner. Randy would
01:42:38.500
have been able to schedule the moment of his death. It would have been something. And on some level that
01:42:44.440
could have served him. But the realization that Randy had a mission to sort of prove love,
01:42:52.620
to show love, to be love, he had a reason to keep going. There's a moment where if it had been too
01:43:00.360
easy for him, he probably would have elected to hasten his death. But because he didn't, and because
01:43:05.780
he let it play out a little bit longer, he got to a lot more people. He had a lot more final moments
01:43:12.100
with friends. He got into the bay and he had the pride of playing his body all the way out. He played
01:43:19.320
every cell all the way out, which for Randy served him very, very well. And I think it makes the point,
01:43:28.100
one of the problems with the dying laws, and let me just pause there too, by the way, Peter, the
01:43:33.280
language of physician-assisted suicide has gone away in favor of aid in dying or assisted dying to get
01:43:38.980
rid of the word suicide, emotional baggage around that word. And importantly, these laws are for people
01:43:44.660
who already have a terminal diagnosis and for whom death is coming soon. So it's importantly
01:43:49.520
different. But if we had just exceeded his wishes and said, oh, sure, you want to die of Randy sooner
01:43:55.000
and later? Yeah, we'll make that happen. Just in the name of helping him not suffer, we've made that
01:43:59.660
happen, and it would have been a mistake in his case. Because as I think a lot of us know intuitively
01:44:05.200
or explicitly, a meaningful life, a good life is not the absence of suffering. Suffering teaches us too much.
01:44:13.520
It's too important a vehicle for us, actually. A full life requires it. And I don't mean to castigate
01:44:20.920
anyone who does choose to hasten their death. For some people, it is exactly the right decision. When it is
01:44:26.260
seen as a meaningful response, not a flight from suffering, but a moving toward something meaningful. And for some
01:44:32.920
people, a final act of will is very meaningful. But for more people, what ends up being more meaningful
01:44:40.240
is them being more than their pain, being more than their suffering, and letting their body play
01:44:46.220
themselves all the way out and dealing with and adapting every moment along the way, trimming their
01:44:51.380
sails along the way, letting themselves be changed, letting themselves grow right up into the moment of
01:44:57.360
their death. That's actually a more meaningful pursuit for the bulk of people.
01:45:01.580
It's really that pain matters more than being numb.
01:45:05.740
Yeah. Yeah. When it comes down to it, when it comes down to it, for most of us, and this is a
01:45:11.600
realization that came clear to me when I was in my hospital bed, pain is very obnoxious. And I don't
01:45:17.660
like this stuff. We can be more than our pain. Pain isn't ultimately avoidable in a full life, like I
01:45:23.880
said, and it can teach us some things. And really, I'd much rather feel some exceptions, and there's
01:45:30.620
ways to paint this otherwise. But in general, I'd rather feel something, even if it's pain, than feel
01:45:36.500
nothing. Anesthesia is a way, a numbness is a way to die before we have to die. That seems to be a
01:45:43.500
bigger tragedy to me than is death in the first place.
01:45:46.660
Have you had any experience with the use of psychedelics in end-of-life care? Are people
01:45:54.120
doing any research on this? Obviously, I'm aware of the research on psilocybin in patients with
01:46:01.820
cancer. I believe there was research done helping with end-of-life depression. Are you aware of any
01:46:08.840
other agents that are used besides psilocybin for that research? Anything with MDMA? I'm not
01:46:14.600
sure if, which obviously I know MDMA is being used to treat PTSD, but what does the scope and
01:46:20.200
breadth of that look like today? Substances being researched along these for end-of-life
01:46:25.180
anxieties, fears of death, studying a patient population dealing with terminal illness or serious
01:46:31.420
illness. I can't quote to you all the latest details of studies. There are studies ongoing for
01:46:37.140
yes for psilocybin, but also for MDMA. Then related, similar but different, is ketamine and
01:46:44.400
the way ketamine is proving its way to new therapeutic values. Yes, I'm most excited around
01:46:51.860
the research on MDMA and psilocybin. The research so far, we've got a little ways to go, but the data
01:46:58.240
are pretty darn stunning. The impact is huge and offers access. The psilocybin stuff is the most
01:47:04.360
remarkable, I think. One guided session where setting matters, dose matters, the integration
01:47:10.580
process matters. It's not just people going out in the woods and having fun. But with this process,
01:47:16.080
there are really no adverse events to speak of. People who are gripped by a fear of death,
01:47:22.460
gripped by a sense of meaninglessness and not belonging and not feeling connected,
01:47:27.580
come out of this one session losing their fear of death, feeling part of something larger than
01:47:33.180
themselves, having a totally different relationship to fear. This is one session.
01:47:39.840
The effect lasts for months. It's not just a chemical effect per se. We don't have anything
01:47:45.560
remotely like this to offer in medicine. The closest thing I have in my conventional work as a doctor,
01:47:51.460
if someone comes to me with death anxiety, two things I can do. I can talk them out of it and try to,
01:47:56.660
with enough time, we can find a new way of seeing themselves in the world, a framework that allows them
01:48:01.540
to feel like they belong in their own framework. It takes time if we can get there at all.
01:48:07.980
And the other thing I can do is if you're really anxious, well, I can numb you out. I can give you
01:48:12.740
Valium or whatever else. I can put a wet blanket on your system. That's the best we've had to date.
01:48:18.360
I don't have an intervention that helps me connect you to meaning, connect you to the cosmos.
01:48:24.240
But these medications are offering exactly that and it is beautiful. So we've got a little ways to go,
01:48:33.880
Are these tools the things you're probably most excited about in your field in terms of being
01:48:39.260
able to kind of revolutionize how you're able to help the patients who want or need that type of
01:48:46.480
intervention? Or is there anything else that even rivals this?
01:48:49.540
Yes. There are two things. So strictly speaking from a medical, medication-y, medical physiology-ish
01:48:57.560
kind of overlay, the medical lens, I would say the research going on around these substances,
01:49:04.240
psilocybin, MDMA, ketamine, et cetera, are my favorite thing going. Maybe even bigger,
01:49:11.520
maybe the other thing that gets me more excited is the work going on on the periphery of healthcare
01:49:17.360
and outside of healthcare. That conversations like the one you and I are having, Peter, and I thank
01:49:22.720
you for it up and down. One of the things we're doing is we're kicking the conversation beyond just
01:49:28.520
medicine. It's like we were saying earlier about the design flaw, that medicine focuses on the
01:49:33.120
disease, not the person. And one of the great things that happens when we focus on the person is
01:49:37.580
that we in medicine become part of something larger than ourselves. And we can partner with
01:49:42.300
architects and artists and designers and other disciplines and death doulas and quasi-medical
01:49:48.820
folks and alternative and integrative medicine folks. All of a sudden, we are part of a much
01:49:54.180
larger family working on behalf of something much larger than even medicine. And that's where I get
01:49:59.800
really excited that people, that society, that culture is waking up to these issues. Death has become
01:50:06.280
a medical issue. It doesn't belong there. Suffering and death are way bigger than medicine. Medicine may
01:50:12.580
have something to offer this. Getting back to your question, the thing that I'm more excited than
01:50:17.220
anything else is the rise of commerce, multidisciplinary work, other institutions and
01:50:24.480
vehicles tuning into this idea of life and death so that medicine doesn't have to carry all that
01:50:30.740
water by itself. That people are going to start taking care of people and not handing themselves
01:50:36.460
over to doctors to do the trick. PJ, I really want to thank you because your work and the work of
01:50:43.340
people like you has actually had quite a profound impact on the way I think about life. I'm in the
01:50:50.680
process of sort of barely putting the finishing touches on a book about longevity. And I've kind of come to
01:50:57.460
the realization lately, it's very difficult to do this without writing about death in some
01:51:03.540
way, but not as an enemy, but more in a manner that is sort of symbiotic with life. So maybe not quite a
01:51:13.340
friend, but certainly not a hostile combatant. I just think the way that you've been able to speak about this
01:51:18.880
so eloquently for many years now has been a great benefit to not just the people you've helped, which is
01:51:24.480
obvious. I think those of us who are presumably a little bit further from needing that help.
01:51:30.520
Peter, I can't wait to read that book, man. And that is right on. I think you will help so many
01:51:35.160
people. Just this frame shift of finding a way to include death in your view of reality
01:51:40.880
is one of the great services you can do the world, man. And I, oh, I can't wait to read it.
01:51:47.120
Well, thanks, PJ. And thanks more than anything else for all of your time this afternoon.
01:51:53.120
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