The Peter Attia Drive - #135 - BJ Miller, M.D.: How understanding death leads to a better life
Episode Date: November 2, 2020BJ Miller is a hospice and palliative care specialist on a quest to reframe our relationship with death. In this episode, BJ begins with how his own brush with death radically shifted his perspective ...and ultimately forged his path towards palliative care and helping patients integrate and understand their life in a meaningful way. BJ recounts several moving stories from his patients, which reveal important lessons about overcoming the fear of death, letting go of regret, and what’s most important in life. He discusses the major design flaws of a “death phobic” healthcare system. Furthermore, he makes the case that seeing death as a part of life allows us to live well, as opposed to living to evade death itself. He concludes with a discussion around physician-assisted death as well as his hopes around the use of psychedelics to reduce suffering in end-of-life care. We discuss: BJ’s accident leading to the loss of his limbs and his experience inside a burn unit [3:00]; Coping with his amputations—being tough, the grieving process, and the healing properties of tears [14:30]; Going from art history to medical school: the value of a diverse background in medicine [28:15]; How BJ’s new body liberated him [40:00]; How losing his sister to suicide and his disillusionment with medicine altered his path [47:15]; Discovering his path of palliative care—distinct from hospice—in medicine [55:30]; Our complicated relationship with death, and how acknowledging it can release its grip and improve living [1:02:15]; The different distinctions around the fear of death, and how BJ helps his patients negotiate fears [1:10:00]; The major design flaws of a “death phobic” healthcare system [1:14:15]; Common regrets, the value of time, and other insights from interactions with patients in their final moments of life [1:23:00]; The story of Randy Sloan—a case study of playing life out [1:33:45]; Physician-assisted dying: Legality and considerations [1:39:45]; The use of psychedelics in end-of-life care, and what BJ is most excited about going forward [1:45:45]; and More. Learn more: https://peterattiamd.com/ Show notes page for this episode: https://peterattiamd.com/bjmiller Subscribe to receive exclusive subscriber-only content: https://peterattiamd.com/subscribe/ Sign up to receive Peter's email newsletter: https://peterattiamd.com/newsletter/ Connect with Peter on Facebook | Twitter | Instagram.
Transcript
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Hey everyone, welcome to the Drive Podcast.
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Now without further delay, here's today's episode.
I guess this week is Dr. B. J. Miller. B. J. is a hospice and palliative care specialist.
We talk a lot about what that means, but the reason I wanted to speak with B. J. is I've been
really thinking a lot about better understanding what end of life means and how
understanding the end of life could help us better understand, frankly, what we want out
of life. And by an amazing coincidence, Vijayan, I met very, very briefly many years ago
in medical school, although I don't think he remembers it. But when I saw him again, giving
a TED Talk several years ago, I immediately realized,
hey, that's the guy I met at a party, you know, 20-some odd years ago, and became really interested
in his work, and then reached back out to him and said, hey, would you be interested to sit
down and talk about this? And so in this discussion, we talk a lot about his personal story because
you can't really avoid it. And frankly, his personal story is a big part of why he ultimately chose the life path
he did, which is doing something that many of us, including people who go into medicine,
would find just too difficult to do, which is basically help patients die.
As it means to reach this culmination of their life, we get into all sorts of things, the
difference between death and dying,
the difference between palliative care and hospice,
the differences between loss and regret,
what the medical system they were a part of is good at
and what it's not so great at.
We talk about what really happens at the end of life.
I went lightened or transcendent, is it?
And he tells a number of stories that are quite moving about patients
and also from his own life. And finally, we conclude with a discussion on both the hastening of death
and also what he's most optimistic about, including the use of psychedelics. This is another one
of those episodes that I think people at the surface might think, gosh, I don't really have an
interest in that. I would encourage you to push through that.
I think it's natural to find this topic unpalatable.
And I think that's exactly why people need to listen to this.
So without further delay, please enjoy my conversation with BJ Miller.
Hey, BJ, it's a real honor to be sitting down with you even though we're not in person
together.
Thank you, Peter.
I appreciate you having me, but I'm looking forward to this.
No, I don't.
No, if you remember this, in fact, you can't have remembered this because I'm not memorable
in the way that you are, but we've met a few times at parties in medical school.
No, she's...
You went to UCSF and I went to Stanford.
And I don't know if we were the same class, but we were pretty close.
What year did you matriculate at UCSF?
97.
Yep, so we were the same class.
And I don't recall you guys ever coming down to Palo Alto,
but we sure as hell went up to San Francisco a lot.
For social reasons or for school?
No, just for social reasons.
Oh, yeah, yeah, yeah.
We just had friends and common and stuff like that.
And so it's almost 25 years ago.
And I remember one of the things that stood out was you had a dog, right?
Uh-huh.
Yep.
What was your dog's name?
I don't remember.
His name was Vermont, like the state.
I got it.
Yeah.
Wow, I'm so psyched.
You remember him, Peter.
He was a huge part of my life and tell you that's beautiful.
So I will admit something, BJ, which is that I never had the nerve to come up to you
and say, hey, what happened?
Because it wasn't subtle, right?
Yeah, no, it's pretty, it's pretty pleadingly obvious, yeah.
So as I would learn later, your life changed shortly after Thanksgiving in 1990, right?
That's right, you got it, bud. Yep.
And that change, which I think on the surface,
would sound like a change for the worse,
maybe wasn't for the worse after all.
Can you tell folks what happened that night?
Yeah, I mean, it was a big moment in my life
as you're pointing to Peter. Yeah, I mean,
and there's a lot to talk about it.
So I'm trying to just kind of parlay the basic facts and then we can talk about any of it. So I just back from Thanksgiving
holiday and I was very happy to see my friends. We were all kind of that early college. We
were basically in love. We couldn't wait to see each other. We being away from Thanksgiving
break was a bummer really. So anyway, got running back and we immediately decided to go
Hand full of us will go out and have a drink and just
Run around I was actually on my way to the computer lab to print a paper when it kind of got intercepted and off
We ran to go have some fun. I think crazy. It was we didn't go nuts though, but we were heading to
The Huawei market which in the east coast is sort of like a 7-11.
Late open all night, place to get a sandwich, kind of, joint chip, whatever.
Anyway, so we're walking to the Wawa market.
This is at Princeton University, where there's a commuter train that runs right up along
campus, because Princeton's sort of a bedroom community for New York and Philly.
And so this commuter train was called the Dinky of all things. It was just sitting there, not operating hours. So I was just sitting there
and we stumbled across it and just decided to climb on top of it, just relatively innocently
for things we had done with felt much stupider. But anyway, we decided to jump on top of
a climate climber ladder to stand up on like you would a jungle gym or a tree or something.
And when I got up on top of the train,
I had a metal watch on,
and the electricity,
art to the watch when I stood up,
because I got close enough to the line.
And that was that.
The electricity entered the arm, my left arm,
and then ground down,
and eventually there's a big explosion and whatever else.
And that was that. I survived that, but ended up losing both legs below the knee and that one arm below the elbow
Bear touch you go in the burn unit and living through Jersey St. Barnifest Hospital for a little maybe a month or so
Then I was in there another month in the burn unit and then eventually out of the air and into rehab and then a long process of
eventually out of the air and into rehab and then a long process of re-entering the world. But anyway, that was my big, the thing I call the cosmic spanking, that big, big moment that
just came along and completely reoriented me, changed things around.
Do you remember the actual shock or is that sort of so traumatic? A lot of times trauma patients,
for example, when they're hit by cars or
sustain a significant gunshot wound, especially if it's followed by a prolonged period in the ICU,
they suffer some antigrade amnesia, so they forget things in front of them, not so much behind them.
But a lot of times that includes the actual event. So what is the last thing you remember? Do you
remember actually climbing up on the train?
I don't. No, I remember the night is all very fuzzy. I remember sort of snippets from the hours
preceding, but I don't have any recollection of approaching the train or getting on top of it.
This is just piece together through stories from my friends who are with me. But the first memory I have
with me, but the first memory I have around the accident itself that night, I can picture a lot of it again because my friends have told me, but my own memory really began in the
hospital that night. I was taken to the local ER where they just did basic things, they
were called fasciotomies, which is, you know, with electrical burns, you burn from the inside
out. So you've got all this heat running around in your system and it'll keep burning called fasciotomies, which is, you know, with electrical burns, you burn from the inside
out.
So you've got all this heat running around in your system, and it'll keep burning you.
So they've got to vent that heat.
Basically, the local ER, they cut these fasciotomies to vent me, and then stuck me in a helicopter
to go to the New Jersey's one burn unit at St. Barnabas.
I can remember being loaded into the helicopter vaguely.
I was very tall. I was almost 65 and I just remember the pilots.
There was this awkwardly trying to get me into the cockpit because I was too long.
So all the amputations I had were surgical.
So at that night my legs were burned. I still had them.
So then you get to a burn unit and you're with now a team of doctors and nurses who have
seen the worst of things.
For what it's worth just as a bizarre coincidence in general surgery, which is what I went to
do after medical school, you rotate through all the different disciplines of surgery.
It's quite random.
You'll spend a month on this, a month on that, a month on all of these different things. And my very first month of internship was in the burn unit.
I had never done any of that during medical school.
So to show up on day one at sort of the premier burn unit
of Maryland, which basically meant it was the referral center.
So if you got burned in Pennsylvania, you were still coming down to Hopkins. I mean, it was another world. You got it. I mean, it was very difficult to
get used to doing dressing changes on patients and just seeing the amount of pain people were in
when they suffered these burns. And the other thing that was remarkable, at least to me, was how otherwise alive people could look
when they came into a burn unit,
but yet how poor their prognosis could be
based on the amount of surface area that was burned.
We basically had actuarial tables that would say,
well, he has this much of third degree
and this much of second degree.
And even though he's sitting here, actually able to even communicate with us, this person
has a very high likelihood of not surviving this injury.
Yep.
It's interesting that you say that because one of the early memories with peace together
for me by a nurse with whom I became very, was when I landed in the bay at the burn
unit, this was not uncommon, but apparently the text and the team were sitting around
basically taking wagers on whether I was going to make it.
There's probably a very much the same kind of what you were just describing.
That sounds kind of harsh, but I don't sure it wasn't.
I think that was just, as you know, these things get depersonalized and that setting almost
by necessity.
It's a brutal setting.
But anyway, you can talk more about that.
But I'm in a way glad here to know that you know it in a way that is like it is another
world that I've always struggled to impart to people what it's actually like in there.
It is a wholly unnatural place.
I mean, nature is completely kept at bay.
Yes.
And there's a reason that it's very separate. I mean, in small hospitals they do what
they can, and I'm sure they don't have dedicated burn units. But at tertiary care centers, they
have dedicated ICUs that are exclusively for burn patients that don't take other medical
or surgical or neuro or pediatric cases. And it's also a very special type of nurse
that works there in a special type of doctor
because everything from the, frankly,
just at times the grotesque nature
of the disfiguration of the skin,
these dressing changes that we talk about
doing several times per day on a patient
they require incredible sterility at the bedside.
Frankly, in the early days,
early days of the patient's admission,
even the smell
of burnt tissue is a very foreign odor to people. So everything about it, it places, by the way,
everything I've said says nothing to what the patient and their family must be experiencing
as they're coming to grips with this. So when did your parents arrive? I'm sure you don't
remember it, but based on the stories. They came almost my poor parents, man. They got the classic in the middle of the night.
They were in Chicago where I grew up at the time. So they get a call from New Jersey at 4am
or something ridiculous. And basically not a lot of information, just everything was
emergent and scary. And basically your here with us is very badly injured,
might not make it through the night, get here as soon as possible, basically one of those calls.
So my parents were there as quickly as it could be the next morning to your point about this place.
So what they've learned, a burn treatment science is that infection is very often the thing that
kills people.
Hence all the sterility.
So someone might look just fine, but they're so exposed, their body's so exposed, that
you're so susceptible.
So that means whoever's in your room, they're in spacesuits and whatever else.
And for a while, I was not allowed many visitors.
There were friends who would come, but they couldn't come in the burning it.
Eventually, they allowed my parents at the bedside. One at a time.
That was it. But it was really powerful and very potent visits. I remember them
very well as did my parents. As you describe your experience as a student, as a
trainee, it's not much different because it's such a foreign exotic environment
that works against intuition a lot of ways.
The things that touch, for example,
something you have to avoid at all costs, smells,
everything is foreign.
There is just no place to sort of rest into it,
a familiar, you know, imagine if that was that way
for you as a student, train eat.
It was certainly that way for myself and my parents.
But in a way too, that foreignness and by virtue of me being so
undeniably vulnerable, I was not moving. I was completely at their mercy. In a way, it allowed
me to very quickly submit to the place and to the people working there because I clearly
had nothing approaching an option. Very quickly, I was aware of my vulnerability
and immediately trusted the people who are working on me
in a way, because I had to, but also as a comment
of how skillful they were if there were.
Do you remember the actual discussion you had with the doctors
about the need for amputation?
Because obviously, when the fasciotomies are performed
initially, it's with the hope of salvaging the limbs.
Presumably at some point, they came with the realization that trying to salvage the limbs was actually going to threaten your life due to infection, they had to go.
I've been around those discussions. Do you remember that?
I do. I do. I do. My first memory, real vivid memory before, besides that helicopter
moment, was the night before my initial amputations. And the part I remember about it, which is maybe
five or six days in Peter, that's when I was hemodynamically stable enough. And more to the point,
the demarcation of viable tissue versus unviable tissue was a little bit more obvious.
So surgeons had a fighting chance to remove the right amount.
So Dr. Mansur was the main surgeon, an amazing, amazing person.
I remember he came in the night before and said something, all I remember is an A conversation
and then I remember falling asleep.
I fell asleep in my little room and somehow you know that feeling Peter where you wake
up from a dream, and there's a moment of reorienting yourself, and maybe it wasn't a very pleasant
dream, and you take a little second and you get your bearings and you go, oh, it's just
a dream, I think.
You know, it's the thing is people show up like taking an exam naked or something.
So they're late for their wedding or some moment
that you wake up and oh thank God, that was a dream.
I remember I woke up in the burning it
and having that sensation strange, I remember,
I looked around and I had this weird feeling,
oh, this whole amputation thing that I was just hearing
about was a dream. Oh, I'm fine.
I got into the bathroom.
So I, in my haze, managed to extubate myself.
So not an easy thing to do.
Extubate myself, pull my central lines out of my neck, unstrap my arm from the bed.
And, all the while, I can remember this so clearly.
I'm looking around my room with all these cues that obviously I'm not in my bedroom,
but for some reason I'm just thinking, oh yeah, this is my room.
I'm just going to go to the bathroom now.
And I got up and out of bed eventually and started walking to the door with all these
alarms going off in the middle of the night.
Somehow I don't know where the nurses were, but there was a gap there.
And I started walking to the door just to take a leak on my crispy little
feet and the Foley catheter line ran out. And as you know they're usually attached
to the bed so when that line ran out it yanked on that Foley and that's a
pain that I won't soon forget and that catheter ball was not deflated. We can
explain this for your listeners but anyway. I was just about to say, we're gonna hit pause
and explain everything you just said,
but let's start with the extubation.
So you have a tube that is in your airway
and a machine that is breathing for you.
So the act of pulling that out
means you now have to breathe on your own
something you have not been doing for the previous week.
That alone could have killed you.
Yeah, right.
You then pulled out a bunch of central lines,
which if not compressed, so central lines
are very, very long intravenous lines
that go into the main veins inside your body,
veins that most people don't even realize they have,
called the venena Kava,
subclavian vein, et cetera.
To pull those out without the appropriate protocol of compression could also lead to internal
hemorrhage and all sorts of crazy things.
You're dodging death.
You're three for three on this.
Yeah.
I mean, yes, the retrospect I smile almost with pride because it feels like sounds of tearing.
I'm obviously trying to have no freaking idea what I was doing.
But now it's not.
You're unkillable.
But then the thing that finally gets you is a catheter about the size of an HB pencil
that is in your urethra up to your bladder, which stays in place with a balloon that's
dilated to the size of a very large gumball. And said gumball prevents the
catheter from ever coming out. And before we take these catheters out of the
Eurythra, which is by itself unbearable, I myself have had one. We have to deflate the ball because trying to pull a
gumball-sized device out of the urethra would be tantamount to torture. But of course, you just
went ahead and through the force of walking towards the door basically removed your own folic catheter minus the balloon removal or yeah
You're still alive, but all of a sudden that dream
Yeah, it is amazing that you're right that you must have done this all very quickly
To make it happen. So now you're sort of having that moment of maybe that wasn't a dream
Mm-hmm. I will never forget this it was a clarity
That world all the hay is cleared up instantly when I felt that fully dislodged from the bladder
But incidentally didn't come all the way out so it's somewhere halfway, which is even worse
Yeah, it was just terrifying so I immediately thought of the floor and I'm screaming and now a nurse comes in
I don't know what the delay was
Incidentally that poor nurse.
We never saw her, I guess.
She was never signed in my room again.
Poor thing, part of her explanation.
She was avoiding my room.
She admitted in some ways because she had a son my age
and looked just like me and it was really hard for her.
Anyway, so eventually, so I'm on the floor now
screaming trying to break the catheter line,
which is impossible. But the only way I can, I thought I'm on the floor now screaming trying to break the catheter line which is impossible
But it's the only way I can I thought I could break the tension
But anyways, they came in got me back in bed and all that stuff
And away away but to your question Peter
It was instantaneous that I realized this wasn't a dream and all the relief that had just I had experienced moments ago in the other direction
Just immediately went away and I was very very
clear on where I was and what was happening to me. Instantaneously, it was a wild, wild moment. I won't
forget.
So what kind of a morning process did you go through post-operatively when you come out with
both of your legs amputated and your left arm.
Short answer is my morning process took me a while and my conscious morning process was delayed
because I at that time embodied the sort of absorb the American notion that no,
what you do is you pick yourself up, you get a back on the horse immediately,
unless you acknowledge what's gone on the better. The tougher you are, the, you get a back on the horse immediately, unless you acknowledge what's
gone on the better, the tougher you are, the faster you'll be functional again, etc. So,
early on, I didn't do any morning, not consciously. I was kind of going the other direction, joking
around, making a light of it. And both the moment of somewhat of denial and also probably
something pretty pointy too. I remember when I came out of that first surgery
So I didn't know that there were people. I knew my parents were there and oddly I don't know how this was possible
My parents moved into the hospital somehow they got a room in the hospital from Chicago
They lived there all the time. I was there. I don't know how to hell that never heard of that
But they did maybe they had huge wings of St. Barnum's centworm being used. I'm not sure. But I knew my parents were there. So I come out of
the OR, come out and I'm heading, they're wheeling me back, the leg amputations, what they
did first. And I knew, whatever the case is, I had absorbed what Dr. Mentsur told me
the night before eventually. I'd woke up from that surgery with no surprises but I'm wheeling back to my room and
as a brief moment where you're going from the OR suites back into the burn units and that you go
to this little hallway and I come out it was packed with people. My friends and some friends have
flown in from Chicago. I was so moved. I had no idea that they were there and it was just a brief
second. There was no time to talk but there. And it was just a brief second.
There was no time to talk, but there was just a lot of love.
I just remember their facial expressions.
I was very, very moved.
And then I went back into the room,
and I remember my mom came in,
and we were sitting, and she was crying.
And my mom had polio.
She'd been disabled my whole life, most of her life.
And I just remember, this is gonna sound, I don't know, it was
part denial driving it, but I just remember my thought when my mom came in was my response
there was, oh, mom, well, now we have so much more in common. Now we're both disabled, almost like a
cheeriness. I love my mom very much. We're very close and I honestly felt like I was joining this
ranks of folks that I always knew existed and felt very much a kins and I honestly felt like I was joining this ranks of folks that
I always knew existed and felt very much of a kinship with the disabled community by virtue of being
close with my mother. My first response was a weird kind of immediate acceptance, but I had to go
back and it wasn't a thorough acceptance. It was where I wanted to be, but it wasn't really where I
was. But anyway, that was my first statement.
It took really weeks.
It took actually my nurse kind of trying to work out there, remember, time maybe a week
or two later, where one of the nurses with whom I was very, very close, joined our card
of poem.
And Joy came in one day, and she was just really moody with me.
She was just like throwing, she was just strangely moody.
And I was just sort of joking around.
And anyways, she's like throwing bedpins around it.
I just like, what the heck?
What is wrong?
Are you okay?
And she's just basically lit in me.
She's like, I am just sick and tired of you not taking
this seriously.
You're just joking around.
Do you have any of them in pride? This is you're just joking around, you haven't even cried.
This is a big, big deal, you're not being real.
And she just let into me.
She let into me until I finally cried.
It was the first time I'd cried, I was weeks in.
It was the most magical thing, Peter.
I will never forget that one either.
And part because it was like a damn had broke
and so much came pouring
out. And it felt so good. It felt like such a relief. I hadn't realized. I hadn't consciously
fought back tears or tried to be tough. I just thought that's what I was supposed to be
doing. And I was unotherwise on autopilot too. But what was also weird about those tears
was for the moments the tears were falling. I had really no physical pain. I've never looked
into this, but I wonder what the connection is between the act of crying, not just feeling
sad, but actually crying, and anesthesia. It was a fascinating moment, but it really moved
me, and it began my relationship with it, began letting in that this was a bigger deal
than I had managed to let it be. I offer that to say,
the morning the grieving was very gradual, took me a lot of wake up to my own feelings about it all.
That took months and years, really. Do you think that that was mostly a sadness and a loss
that came through expectation of these are things I wanted to do that I will no longer do and I am sad as a result of that.
Or do you think it was tears from a different sadness, a sadness that's more born of anger.
Like how could this have happened at such a random event?
I've done far stupider things in my life.
Like why was I wearing that watch?
You can sort of go through all those things. Like do you have a sense of where you were in terms of that, damn, the floodgates opening?
Yeah, yeah, my sense is, Peter, it's a sense driven by most of where how grief materialized
for me over the months and years.
But my sense is, for a number of reasons, I did not have a lot of whiny moments.
And there's a lot to say about that, but to answer your question, no, I think it was
more like, first of all, the physical pain.
I hadn't really let myself, I had just been literally gritting my teeth.
And as vulnerable as I felt, as so exposed as I felt, I was looking for anywhere
where I could look or feel or act or present as strong.
And this is the only way I could think of, I think, was to kind of keep this stuff in.
And so I think part of it was a release around just a physical pain.
And I think the rest of it, it didn't have a lot of clarity around the object of my sorrow,
but the sorrow I really think was had to do with embarrassment for doing this,
for ending up here, putting my parents through so much pain,
I could see it in their faces.
Slowly began to see what it did to friends too, and others around me.
The feeling, I think think a lot of the tears
had to do with here I was taking so much from so many people.
I was embarrassed about that and ashamed about that.
I think that was a big part of it.
And I think there was also an image.
I had just kind of come into my body as a 19-year-old.
And I think there was a sadness.
I didn't know if I would ever have sex again.
What women were going to think of me, what my friends would think of me. I'd been around
disability my whole life and I'd watched how cruel people could be in the projections they make.
And I think part of those were tears that I knew what I was going to be walking into with that.
I think, yeah, all of those things but low low low on the
list Peter were the Y-Me questions. I owe a lot of that to the prep work that my
mother and my family life had said in. It was always much more the question of
why not me. If anything I felt guilty for having too perfect a life before that.
Separate from all of this BJ there's another kind of really transformative event
in your life that has to do with your sister.
When did that take place?
So that was 10 years later.
So that was...
So you're in medical school?
Yeah, exactly.
And I want to come back to how you got to medical school.
But can you tell me a little bit about your sister and the relationship you had with
her in the 10 years that followed this and then ultimately her demise.
It's a good segue.
It's a link.
The way I grew up was I was no stranger to pain.
I was around it.
And there are all sorts of reasons to feel like that life was inherently hard.
And that was something about I felt almost a perversion that I could feel happy ever.
That felt that almost felt wrong.
I don't know how to explain it, but part of my growing up was growing up with the sister.
I have one sibling, Lisa.
Lisa was four years older than I am.
Wild, brilliant, fascinating, just intense person.
And our whole family life so much centered around her and her moods and her thought.
So I was enamored with Lisa. She was my older sister. She seemed so smart to me. She had
emotions around things that I hadn't even thought of. And she had these developed psychological
emotional responses. I just felt like she must have insights in the world that I just couldn't see. And she had such conviction. And she was harsh, harsh, harsh, harsh.
To that conviction, older sister, I wanted, I aspired to her. So I chased her moods around.
Anything she told me, I took at face value. When she owned me in so many ways, as her younger brother.
And she was very troubled. And part of my adulthood was coming into
realized that Lisa wasn't just full of conviction. Lisa was also full of some other things.
And so in my 20s, here I am going to med school, I'm finally learning to
have some separation from chasing my sister's mood around. And then in December,
December 1st of 2000, roughly almost exactly 10 years after
my injuries, Lisa decided to kill herself. Lisa decided to leave the planet. So yes, that
was another, one of the major major life events for me. And that was deep in the medical school.
And one of the things that precipitated my deciding to leave medicine.
I was going to get out of medicine at that point.
No, I didn't know that actually.
Yeah.
I want to come back to this.
Can we talk for a moment though, just to make the connection of how you ended up deciding
to go into medicine?
Because when you were in your freshman year at Princeton, I get the impression
that medicine wasn't even on your radar, correct?
That's right.
You got it.
Yeah.
No interest.
That didn't even cross my mind.
Yeah.
So, after returning to Chicago, going through a very lengthy process of rehabilitation,
you re-enrolled at Princeton a full year later, correct?
Almost, yeah, the following fall. So I went back in September of 1991.
And you changed your major to art history, is that also correct?
You got it, yep.
Why did you do that?
I had been there too for, that's a word.
I had been studying Chinese language and was heading for major in East Asian studies.
But when I was away, when I was in that, the Bernier-N this was the first Gulf War was happening it was so strange I was watching a war
members like a televised war such a wild thing board stiff in horrible pain
to and from that tank room for daily deep readments so horrible pain
interspersed with slight relief in boredom no touch with it there's not even a
window such a weird thing I would toggle between on the television
between watching the war and some cooking show. It was just the strangest, I don't
know why I bring that up. It was just how I spent my days. But now I forgot your
question brother, what were you asking me about? The decision to change to art history. Oh, Gully.
How did I get to that?
But anyway, well, I know, because I'm sitting in this bed,
bored stiff, and of course, even with my little structures
that were still in place that kept me from crying
or acknowledging a lot of things.
Of course, there was no getting around some stuff.
And I was beginning to let into my consciousness
and my daily thinking,
like, you know, sort of preparing, imagining my life down the road. When am I going back to school?
Will anyone want to be friends with me? I'll, but I'm basically bottom line as I'm sitting there
very much pondering the value of my life. What am I now? Am I less of a person? Do I have less to offer the world? What will people see in me?
Want to be on the other side? So basically questions of meaning and questions of identity. Who am I?
What do I do with myself now? What can I do? I found myself in that mix just sitting there pondering
questions like meaning of life. Not in a recreational or intellectually kind of Ivy League-y
Write a term paper of way, but in a way that was very obviously relevant in therapeutic and practical
These existential issues became very practical and I and that's where they belong by the way, I think
So sitting there one of my friends of closest friend Justin would come visit me at the Bernier eventually and we find ourselves talking about art is this thing that humans do.
So I was looking for meaning making what humans, how humans work with pain, how do humans
work with things they can't control.
And that led me to thinking about art.
Why do human beings make art?
Why do we take the material of our life and create with it and fashion something
from it that wasn't there before but now exists thanks to us. It's kind of a stunning
impulse that human beings have. Whether you're making art, it's going to hang in a museum
where you're just flutzing around your house. We are a very creative species. That was
lighting up for me as a very important and telling, and that maybe the art world
had something to teach me.
So when I went back to college that fall, I rejoined my class.
I just had to finish the exam somewhere in the summer, and I had a free semester.
I was supposed to be in China the second semester, sophomore year anyway.
I didn't have to do much to jump back in with my class, and that was very important to
me.
I wanted to be back with my buddies.
That was a real driver.
So anyway, I had back, Princeton, joined my class
and changed my major to art history, to studying art.
And that was a really consequential decision
when I'm actually very proud of.
I've talked about it before on this show.
I think it's even come up during a discussion
where someone asked, what's the best major
that I would recommend for someone
who wants to go into medicine and I,
I don't have great insight on this,
but the one thing I generally suggest
is anything other than premed.
Because I think whether you study art history
or engineering or a foreign language and a foreign culture,
you're probably gonna get something out of it
that you would never get if you studied premed,
yet most of everything you study in premed,
you're going to pick up in medical school,
which is not to say that studying premed is not a good idea,
but that's my two senses,
that the people who came in with totally different backgrounds
often were people who didn't actually plan
on going into medicine as the case in yours.
The stories are usually pretty interesting.
So when in the journey of art history, do you then realize you want to make what I think is even probably a greater stretch or leap,
which is to actually go to medicine. Yeah, so let me first see your two cents and raise in mind.
Unless we want medicine to simply be the stuff of technicians, a technical pursuit, which
of course it is in many, many ways, I teach in med school.
I haven't as much lately, but I've spent a lot of time teaching in schools of medicine
and nursing and love it, love it, love it, love it. And if we view medicine as a technical pursuit simply, then okay,
pre-med focus great.
But the trick is of course in medicine is our job is not just to,
it's one thing to know details about molecules, how they work.
But it's a very different thing to know why it's amazing to have molecules in the first place
And if you have not thought one way or another isn't it to be hard doesn't even have to be through school per se but you better find a way
If you're going to go into the healing professions a clinical professions you better find a way to
delve into why life is amazing and horrifying why is it it so hard to let go of? Why is it so
hard to love life when you know it's going away? What is this all about? In other words,
questions around meeting and identity. One way or another week physicians, and you can
see what happens in a healthcare system that somehow has crowded those thoughts
out as somehow being irrelevant.
You're left with a lot of zombies, you're left with a lot of people with pulses, but have
no idea why it's amazing to have a pulse in the first place.
So anyway, I can go on and on and on, but boy, I really, really, really love the notion
of people who study humanities then going into the healing professions. I think it's
some people see that as like a left turn like oh but I couldn't make a bigger case for art history
was some of the best preparation for medical school I could imagine. I think you're bringing up
really great points PJ. I think medicine needs all of the above. You need people who have probably
gone incredibly deep on a very narrow subset of science. You need people who have probably gone incredibly deep on a very narrow subset of
science. You need people who come in with engineering backgrounds. You need people who come in with
humanities backgrounds. And I haven't, to be honest with you, paid much attention to how medical
schools are doing these days in terms of recruiting talent. But the war for talent looks like
in medical school versus business school versus law school versus other graduate schools,
but I would hope that they've figured out what you're saying and they're making adjustments in that direction.
I think they are. I know UCSF, my alma mater, has.
They've really invited folks like myself. I didn't tell any of the pre-meds at Princeton.
I did all the pre-medwork after college and UCSF has purposely attracted a lot of folks who are starting med school, a little later
in life, have some other life experience, etc.
Something of a trend there.
And with you, right, it takes all of the above medicine is also a technical pursuit.
I guess even if someone wants to be a pre-med major, take that more conventional route, my advice
to them was just make sure you actually love it, just make sure you love the nuts and bolts,
so you're not just doing chemistry,
just as a means to the end of medical school.
You find something to study
that actually cultivates you loving something.
I think that's a major, major distinction.
That could be engineering, that could be art,
that could be chemistry.
Yeah, I've always felt that the history of science
is also equally beautiful.
And so when you're studying physics and you're studying chemistry, to be able to study it
through the lens of how the people who discovered it went along their journey probably creates,
or at least fosters some of that intellectual curiosity and passion that I think can be
found across multiple disciplines.
But still, I want to get a better sense of what made you decide to take a very bold step,
which is, I think, to leave a comfort zone of, you've now spent four years doing very well,
and you've got this degree in art history from one of the best schools in the country,
and you now decide to presumably go back and do a post back year to do a bunch of pre-med
courses to go and do something that seems about as orthogonal from that as anything.
I'm sure it had a lot to do with your experience, but can you speak specifically to what it was
and how it, for the lack of a better word, marinated over the previous four or five years?
Yeah, absolutely.
I can track this out.
So, one of the things the injuries did for me cut to a spoiler alert.
One of the therapeutic endeavors here, one of the ways to get through something is in
some real ways to let yourself be changed by it.
I knew enough that, thanks to my mother and the disability rights movement, that the
goal for me was to not
get back to where I was before the injuries.
First of all, practically speaking, it wasn't possible.
I wasn't going to get my old body back.
Also, why cut myself off from all those lessons and all the experiences that happened during
that period.
It's not something I could forget, but nor is it something I would want to forget.
It's too dang rich.
So the idea was really always I knew
versus the sort of normal language and thoughts around disability and it's like that it's something you would want to overcome
Put behind you and I think a lot of lay people or able-bodied people think the highest compliment that can offer disabled person is
Oh, I look
at you and I don't see disability at all.
I know what they're trying to say, and we can talk, we can open that up to you if you want
to down the road here, but you're trying to say.
But in a way, it's not really a compliment.
I don't want people to ignore major parts of me just to look at me.
I'm not getting over these injuries every day.
I'm reminded this is not something of the past, something I live every day. So when I hear comments like
that and you just feel and you're still aware that you're not, someone isn't really seeing
all of you. That's problematic in a number of ways. So I knew, I knew that I wanted to work
with these experiences. So that was a major, major theme. And medicine lit up as just theoretically as a way to put these experiences to use.
And the linkage between studying art and studying human endeavor and the study of medicine
was not such a big leap. The interest, the through line, the basso continuum for me was
just being very interested in human beings, human pursuits, human endeavors, and human creativity.
Art was one application of those interests, and medical science was another.
It's like pondering what I wanted to do, I thought, well, gosh, medicine would be interesting.
If a doctor walked into the CME and the shoes that I'm wearing now, that would affect me.
In a positive, this was some way I was actively looking for an outlet where my injuries weren't
something that someone would look past or forgive, but were actually in some way something
of an advantage.
And in this way, for me and medicine, I can tell you having this silhouette, having this
body has really been an advantage in a lot of ways, if the goal is empathizing with your
patients and their families, if your goal is seeing yourself
as a fellow human being next to them,
if you know and believe that's where healing happens,
then this kind of stuff, it's the best prop I've got going.
I really feel for my able body clinicians
who don't have some obvious source of pain and suffering
that in parts to your onlookers,
to parts to your patients that you've been through some stuff, you've scraped a barrel.
So, anyway, I'm going on and on about that.
But so, get back to your question.
That through line, I knew I had a hunch that that would serve me in medicine just as it
did in art, and that I could apply these lessons into a therapeutic application of studying
perspective and meaning-making.
So medicine lit up is a potential thing that I could do that would be fascinating, I
could make a living, and I could exercise these lessons in a novel way.
So it makes unbelievable sense, actually.
And I suspect it changed many things for you.
I mean, look, if you just described yourself as a six foot four handsome guy who goes to Princeton,
you probably are a pretty ambitious guy.
You're gonna go off and study foreign relations
and do all sorts of cool things.
And then everything kind of gets taken away in an instant.
How does that change your relationship with your own ambition or
what it means to try and fail?
Had you ever failed at anything, by the way?
Athletically and sort of academically, even in the 90s, I imagine getting into Princeton was almost impossible.
Yeah, I exceeded in ways,
but also so true, and I just had some green lights right in front of me. I had this
amazing education, I had some basic abilities. I could make a case for us that I had suffered
and struggled in various ways up until that point and some things hadn't always gone right
for me, but there are such a different scale. There's such a different scale, but even
as a kid. So in some ways, no, I really had an experience loss in some big way. But what I had experience was loss through people and others that I
cared about watching post-folio syndrome take my mother's physical function down, watching
my sister's struggle. So in some ways, part of my charge as a young person was, I hated
that I didn't have more wrong with me. I felt there was a mismatch. I felt at odds with the world.
I felt this pain around me,
but I didn't really feel like I had my own access to it.
My problem was I didn't really have anything to complain about.
I knew that life was really, really hard for many, many people.
And internally, my life was hard, just imagining that.
And in some ways, getting this new body,
and in some ways, I have to say,
I've made it such. I cultivated this idea. But in a way, I got the body that much more
mirrored how I felt inside, fragmented, broken, confused, unintegrated, different, and some
weird ways this body really, the physiognomy of my body actually suited me in some real ways.
I chose that, I ran with that, it was true, but it also was a way for me to get into this
body eventually and quit wishing it were something else.
By building on what this body was showing me, I knew the clever thing was I knew what
I was doing was building a case that this was the right body, that this was a good body.
This is the one for me.
And then you can imagine that really cuts down
on the regret and the second guessing.
And if only I had four limbs, then I, blah, blah, blah.
That's the kind of mindset I was heading for
and trying to cultivate.
Now here again, brother, what did you ask me
that I went down on that
tangent? No actually I was talking about this idea of this could have actually liberated you
a little bit. Yes. Yes. And I think you've articulated that very neatly. I want to come back to your
sister. We all do this when we get to medical school is we start to learn things that explain things
we've seen in our past.
For example, it's the first time you would have learned, I suspect, on some detail what
the polio virus looks like and what a virus does, how it is that your mom actually came
to contract this virus and how a vaccine ultimately would go on to make sure people wouldn't get that virus.
And I would learn about the cardiovascular disease that ran so deeply in my family and really understand the pathology of this.
At some point, did you start to suspect that your sister had whatever you want to call it formal mental illness?
Or did you not think that that was the case at all or how did you think about your sister once you were in medical school and you began to learn about mental health
in a somewhat formal way?
Quick answer here is no, I didn't.
The only time I actually let myself do that sort of the pathological overlay was after
the fact, after she had died.
Leading up, it's telling.
I mean, leading up to that, even through medical school,
studying manic depression, something that she was
posthumously diagnosed with.
Oddly, it never registered as me reading about someone
like my sister.
Somehow, when I referenced this a little bit earlier,
was somehow the way she was or the our dynamic,
and it wasn't just me it was my parents to
and her psychiatrist to she was a master manipulator she can have anyone thinking exactly what she
wanted them to think and particularly me as her little doting brother who just looked up to her.
If I absorb anything from Lisa it was that Lisa was right. Lisa had it right, including her angst and her pain.
The world is a painful place, and Lisa was reflecting that.
But anything I saw, Lisa was the standard.
She was right.
Everyone else was wrong.
But she kind of rolled with what she was selling.
I did roll with what she was selling, and deeply, to the point where any idea of pathologizing
her just completely bounced
off my head. It didn't register as relevant to her. She was the right one until she ended
her life. And then that prompted all sorts of revisiting that thinking also then eventually,
you know, my parents, what they did to try to make sense of all this. They went through
her diaries with the psychiatrist. And it was in that act. I didn't join them in that, but I received the news and I believe it,
which is she was just textbook bipolar. I mean just outrageously textbook. And sometimes I'd get
my quitting wanting to quit medicine did have something this was right after Lisa died.
On the list of why I want to get out of medicine, I was like, Jesus, I can't, I didn't even see,
why don't there my nose?
I'm trying to become like a healer person.
I can't even acknowledge that my sister's sick.
This was demoralizing on some level,
but I also compliment myself, she had a shrink
for better than a dozen years who didn't notice this,
who didn't, who was somehow shocked
that Lisa killed herself.
Weirdly I'd I remember on the one hand here I didn't see any of these signals
coming and at the same time I remember where I was when I got the news of her
death I was with my dad in a car and my buddy Justin my mom called and my dad
picked up and his kind of usual sing-song-y way. And there was a pause, and then he immediately starts bawling.
I knew instantaneously that Lisa was gone,
and when I heard it was suicide, there was not a single
cell of surprise in my body.
That's just an observation.
So I'm telling you two things, and the one hand I didn't see it coming,
and on the other hand, I completely was sawd coming.
I don't know how to reconcile those two, but that telling you two things. On the one hand, I didn't see it coming. On the other hand, I completely was so outcoming.
I don't know how to reconcile those two,
but that's just the case.
So, you're in your last year of medical school
when this happens.
You've now alluded to this twice.
Were you not planning to do a residency at this point?
Or was this the event that sort of tipped you
to not pursue your residency that following summer.
Well, all through med school, I just assumed,
because I wasn't so enamored with medical science per se.
That was just a bag of tricks.
I was interested in gaining a career or work
that allowed me to continue to thinking about these things
and work with others and serve others
around these ideas of identity, of loss and trauma.
I just figured the best place for me to exercise that
would be in the rehab setting.
So I was sort of belining for physical medicine
and rehabilitation.
So deep into medical school, UCSF didn't have a program.
So I went and did an externship somewhere,
a rotation elsewhere, at least.
And during that, I'd already begun to apply
for residencies in rehab medicine at that point. And so I then I hear a deal
rotation, I had already committed to this field, and I hated it. The rotation
was, I guess, really did not enjoy it. For all sorts of reasons. One, it was,
it was all mechanical. This idea of like rehabilitation. First of all, the
phrase is problematic. Rehab, like the goal would be to get back to where you
were before the injury, which I've been saying, I just don't phrase is problematic. The rehab, the goal would be to get back to where you were
before the injury, which I've been saying.
I just don't believe it's true.
It's importantly untrue.
And this idea that it was so mechanical,
I'd nothing to do with the personal transformations
that happened.
And that's where I realized I was so interested.
And that plus I realized as I was walking out of patients' room,
I kept hearing nurses say, look, Timmy,
you can be just like,
BJ, he's a doctor now. I could hear myself being served up as a poster child. And I didn't
like the mechanics of the job, I didn't want to be a poster child. It's so facto. I was
like, I gotta get out of this. And one of my promises to myself going into medical school
having learned what I learned was, hey, life, life's important life's hard life's beautiful
I'm not gonna just get stuck somewhere and have a sacrificial life
I know a lot of our colleagues in medicine who went into it because their parents were doctors and they hated it
But what else am I gonna do now? I've gone this far or one way or another
They just sign up willfully sign up for a life of misery.
I knew I wasn't going to do that.
So I promised myself.
And at this point, another thing I learned from the injuries,
which was so critical, was the ability to,
I was much less afraid now.
I was much less afraid of failure.
I was much less afraid of falling.
So you asked me earlier, if I had anything really go wrong
before in my life.
And somebody's answer is no.
I was a very frightful, melancholy child, sensitive, which would end up manifesting
as fearful at times.
Now I was going the other direction.
And fear, I had a totally different relationship with fear.
I saw falling as a skill.
So anyway, the bottom line there was I was willing to try medicine and willing to dump it.
And in fact, it felt empowering to do so.
It was a reminder that my life was bigger than just a job choice.
Anyone's life is.
So there I am, deep in med school, already applying for resences, and screw this.
And so as I promised myself, so I called, dropped out of the match, talked to my dean,
and I am finished.
I'll graduate, but you know, I'm doing good to other things.
She talked me into, she said, okay, okay, right? I had begun to be disillusioned with medicine
before my sister's death, but that was sort of the straw that broke the camel's back. As
you've referenced, I think, you would bring in idealism one way or another into the healing
professions. And then you have to go through this process of disillusionment
where the practice of medicine isn't necessarily jiving with the ideals that you bring into it.
And that can be very stressful.
But I do think it's important for any trainee at one point or another to go through some disillusionment.
My response to that disillusionment was to get the hell out of it, especially as I realized
I did my rehab medicine.
And again, Lisa's death was just like proof that I'm just not.
I don't want to do this and I'm not cut out for it.
But then I got talked into doing my internship, that first post-doc year.
And my family was in Milwaukee at the time.
I had gone away.
I had left home when I was 15.
And given Lisa had just died,
given I didn't know what I was doing in some ways, I said, okay, while moving with mom
and dad, we'll recongeal as a family, spend that year together, and I'll bang out my internship
and just get that done and be done and move on.
But it was during that internship that I stumbled into palliative care, and that's where
everything changed again.
So PJ, what is it that you saw during your internship that both
made you change your decision leaving medicine and also concentrated or focused you on an area of medicine called palliative care?
So a couple of things happened.
of medicine called palliative care. So a couple of things happened.
One of the things I just sort of stumbled into this elective during my internship.
We have basically one month of elective time if I remember correctly, maybe more.
But I'd spend a little time with a hospice doc at one point.
Actually, my best friend's mother was involved in hospice and she turned me on to the idea.
But again, I was so hell-bent
on rehab medicine figuring that was a place for me. And it wasn't sure that I had anything
special to offer beyond that so rehab setting. But I had absorbed the hospice, was simply
just where people go for the final days of life that was, I thought I understood what
that meant. But anyway, stumbled into this pound of care elected at the medical college of Wisconsin, which just happens to have been one of the early adopters of pound
of care, David Weissman, non-collegeist, staring built on the early great pound of care programs,
which just happened to be there. And on that first day, we went and saw a patient. I watched
David talk to her about code status. This is in the hospital.
He was a woman with heart disease, advanced heart disease. And David was trying to
talk to her about her wishes, what kind of care she wanted for, and trying to
impart how serious her heart condition had become. Tricky conversations,
varying and most psychologically loaded content, really tricky. The zone that
medicine traditionally does not handle very well.
And so I'd seen all these camera points,
but I'm here and watching this guy sit with this woman,
sits on the edge of her bed with her,
just immediately this very different rapport.
He's talking to her like a human being,
not hovering over her like a superior,
someone who's there to fix her.
He was there as a fellow human being,
and it just showed it in his body language, in his tone, in his work choice, and it was beautiful.
And he said to her, and I just watched how she responded to him, and it was remarkable.
And he said something to her, and he tried to get to the code test question,
and said something essentially like, when you die, do you want us to help that process along, make sure you're comfortable through that process?
Or do you want us to really fight that? You want us to go to war with that notion and do our best to pull you back?
Something along those lines. But the magic moment was him looking at in the eye and saying, when you die, of course, this human being, that's a very reasonable thing to
say because we all die. It's not if it's when in the medical setting, that is not the way
those these conversations generally work. I was so moved by watching this and he adhered to
a knowledge of someone's death and what I saw on her face was not shock or anger, but relief that this man was talking to her plainly
about her life.
And it was so gorgeous, so poignant.
That moment really, really stuck with me.
And as I got to one home that night, I remember thinking about it.
I was like, well, this is what I've been looking for.
This is in this world, we take in proud of care world, illness, disability,
death are normal. They're not anomalous. This field treats these life events as normal
life events, which of course they are. The starting point for proud of care is something's
happening that you can't fix, that you can't change. And that was for me, all along, in rehab, you could see would be similar.
Like rehab, the events already happened.
Something's gone wrong.
Now what you do.
I knew I was interested in them.
Now what?
But here this field was digging into all the, it's not just the angle of the joint it was
concerned with, but the angle of the thoughts and the way that we see ourselves and the words
we choose to describe our place in the world and how we either suffer for those words or
how we really can find ourselves through something more therapeutic.
And it was such a craft, it was such a, it was such a word, not a instrument.
So anyway, I really was really, really moved, but the first access that opened up was,
I'm not here to fix people.
I'm here to be with people as they find their way, as they deal with things that they
can't control.
And that was the hope for me in so many ways.
How would you explain to someone the difference between palliative care and hospice, which I
think many people use interchangeably, but I don't think they really are interchangeable, are they?
They are not.
Thank you, thank you, thank you.
A quick public service announcement,
because it's a really big problem for a number of reasons.
But palliative care is simply the interdisciplinary pursuit
of the quality of life.
Within the context of serious illness,
palliative care is that mode of care which helps you
fuel as well as possible.
Emotionally, physically, spiritually, you name it.
My job is to help you deal with the facts of your life and to feel as well as you can.
There is nothing in a definition of how to care that makes it that you need to be dying
any time soon.
Time is not mentioned.
There is death is included in this, but it's not the focus.
It's simply the pursuit of quality of life. And if you need to pose it like we do in medicine,
if you need to have objects on your efforts and enemy as it were, the thing we're after
is how to care. The thing that we treat is suffering versus disease.
And there's a lot to that, we can unpack that. But so that's powder care.
Hospice is a subset of powder care, which is that mode, that type of care, but reserved for the end of life, the final months of life.
So hospice really is, essentially end of life care, is powder care that's applied at the end of life.
But that's just hospice.
But powder care, there's no mention of time, you just have to be struggling. You just have to be interested in quality of life.
You not have to be dying any time soon.
This is a huge, huge distinction because of all of our death
folks, because they think pad of care and end of life
care are hospice are the same.
No one wants to talk about it.
No one wants to face that because of all the baggage
around death.
So consequently, people suffer for years,
so they could get a lot more support if you've had a care. But because of this one,
it's misunderstanding. They don't have that kind of care because they think that's only
relevant for them if they're dying soon. Nothing could be farther from the truth. So,
does that make sense? It really does, yes, and I appreciate that distinction.
Good. What do you think it is about us as a species?
I can only speak to us because other species I don't think share our metacognition, but
why are we in such denial about death?
It's been said by so many people, we are all terminally ill, and yet most of us, myself,
certainly included, don't act that way at times.
We tend to fixate on things that absolutely don't matter.
For many people, there's Frank Denial of this thing. It's out there, it's some sort of abstract
idea, but it's certainly nothing that warrants any attention in terms of decisions one makes today.
That's really the first question I have, and then there's other things I want to explore here
with you, but what is your take on our just inability to look at death?
I think for starters, I know in my field and elsewhere, for folks who have kind of dared
to turn their attention to mortality or been forced to, then you look back on the rest
of the world and you see a world so invested in ignoring this part of life that it can
feel a little perverse.
And I think a lot of us are quick to say the world and Americans in particular are in denial.
There's some truth to that for sure, but I also think we should cut each other some slack,
just physiologically, neuro-hormonally.
We are wired to run away from death.
Any threat to our existence, we have deep wiring that makes us fight that thing or
flee it or go limp. So we have that impulse in us. And then I think on top of that, there
is as old as human beings has been the signolage that we die. Any adult in this world, maybe
not just just adults, one where another human beings eventually come to the realization that
death happens, including their own death. And I'm not sure that any other species has to
live, has to walk through life, feeling that. So it is quite a predicament we humans have.
It's elemental. It is at the root of the Judeo-Christian tradition. It's a root of many religious belief systems. A lot of philosophy
of thought. It's at the root of song and artwork. I mean, this is a huge, huge subject that humans
really, really struggle to wrap their heads around. So I just want to give us plenty of breadth,
and I don't want us to be ashamed that we haven't figured out this death thing. So on top of those old threads,
modern times, in the last 150 years,
medical science, we're sort of a victim of our own success.
Medical science has gotten much better.
It's easy to be seduced.
My life has been saved by medicine.
It's easy to believe that medicine can forestall death
perhaps indefinitely.
So you throw all these things together
and social cues around anti-aging this and that,
and you gotta stay healthy and beautiful forever,
and put all that stuff together,
and we've conspired to set up a pretty tricky relationship
in this piece of our nature.
No harm, no foul, but I think the reason to push back
on this is A, people die much more miserable than they need to because they haven't dared to look at this thing called death before it's too late.
And because also we have a healthcare system that it's not an intuitive thing to navigate anymore.
And thanks to our technology, it's not impossible to end up on a series of machines.
And that by some definition of life you have a pulse
but that's not a life that a lot of us want to live is hooked up to machines. So we have this
weird technological moment that you can kind of live forever by some very reduced definition of life.
Anyway, there's a little bit of a rundown why it's so dang hard to turn our attention to this
but when people do and I'll come into the climax here, brother,
but one of the things you learn,
whether through religious and philosophical thinking,
or frankly, in clinical thinking,
whether by choice or by force,
once you have to actually try to stare this thing
called mortality, this thing called death in the eye,
not only do you realize that, hey, maybe it's not so terrifying after all, and that you
can do it, but it has a secondary effect of, once you come in terms with, your time
is precious, and that time is relatively short, or at least not endless, it has a secondary
effect of helping you really, really appreciate what you have.
The fact that it ends is what makes it precious.
So there are reasons why we don't look at death, and there are some really good reasons
to help each other find a way to do so.
I think that's just such an eloquent description of what I consider to be a huge dialectical
challenge, which is the problem that I focus on,
BJ and medicine, is how to live longer,
and how to do so without requiring the heroics of medicine
at end of life.
So just as you became disillusioned with medicine,
so too did I.
But it was for a slightly different reason,
which was, boy, we sure do put a staggering amount of
resources and effort in two things that with probably one-tenth of this effort could have
been forced all or prevented all together. And I didn't think I could do anything about
it, so I left for a period of time before ultimately coming back to it.
But I think that what you said is I completely agree that we can do both, right?
We can do everything in our power to maximize our lives here, just as medicine allowed you to live that day.
There's a very good chance at a different hospital under different settings you would have died 30 years ago.
But you didn't. Now, you're still going to die,
just as I am, of course,
and everyone listening to this is going to die.
So we can do both.
We can figure out a way to live the best life possible,
the longest life possible.
Should we choose that to be the case?
But none of that diminishes what you've said.
And I think that's the part that a lot of people
don't appreciate is that
it's one or the other and it can't be both.
Amen. You just hit on a real kind of a root cause. One of the ways we struggle so much these
days is from our structures, our constructs, our ways of thinking. And as long as we think it's
either life or death, either you love life and try everything you can do to extend it, or you love death and just completely accept that it's going to come today.
This false dichotomies are the problem.
And I'm so with you.
And I'm so excited to be invited on your podcast, but it's because our relationship with death
is maybe a problem or just under-realize, but if there's a problem here, it's the false dichotomy.
It's the either-or thinking when the both-and-thinking
is really where it's at.
So I love that you and others are trying to think
through how to live longer and live better.
I love life.
My relationship to death, even my acceptance of death,
is only to do with my love of life.
It would be a real shame of a shortcut that if in order to prepare yourself for the inevitability
of death, you somehow stopped loving life.
You somehow welcomed depression.
So therefore, you wouldn't love life so therefore you're ready to die because life kind
of sucks.
It could be so much better than that. And if we can
find a way to include death into our view of reality, like, I don't love death, I love
reality. And reality happens to include death. Therefore, I'll deal with death. I'm
in no way concerted around it. I'm in no way incentivized to make death happen. Again,
I appreciate you having this conversation with me.
I think there's a lot to be learned by pushing past the either or of this.
You've spent more time with people who are closer to death than almost anybody listening
to this. Certainly, you're in a profession that very few people go into as you've pointed
out. There are many reasons for that.
Do you get the sense that when someone is at the end of their life, they are more afraid
of death in the sense of being gone, or the act of dying, and presumably what the actual
mechanism of death and or suffering is.
Yeah, it's a really a great distinction,
a very helpful one clinically.
Presentation may be someone's freaked out about dying
or some existential anxiety.
But of course, as is the case with these things,
it pays to look a little bit more closely
and tease some things out here.
And one of the major things to tease out is,
are you afraid of the dying process
like you're mentioning here?
The suffering you implied that must happen during the dying process, is that what you're
picturing and therefore is that the source of your anxiety?
Or are you really afraid to be dead?
Whether your belief system suggests there's a judgment day and a reckoning, perhaps a
hell, perhaps who knows what?
Are you afraid of what may be coming next?
Are you afraid to be gone?
Are you afraid to miss out?
Does it freak you out that the world will go on without you?
A major poll here, or a major divide, crossroads, let's say, is are you afraid of dying or
are you afraid of being dead?
The former, one of the reasons that it te out is the former afraid of dying. Well,
we know a fair amount about that. There's physiology to mark. There are medications to help.
There are ways to help a body come down for a gentle landing, as I say. There's no need to be
miserable and in pain at the end of life. For the most part, we can do a lot with medications. We
can do a lot to ease the suffering at the end of life in the dying process.
So the answer, if that's your fear,
then the answer is reassurance.
If your concern is being dead,
well, I don't have answers for you,
but I can, as a fellow traveler,
I can accompany you there,
we can think about that together,
we can talk about it,
and then we can make a life that responds
to that big question.
So if you're
afraid of your police system, has you afraid of a judgment day, well, let that spur you to
behave a little differently in the time you have it left or let that help you wait into
non-duality, let that help you wait into the world beyond yourself. That's my favorite response.
If anyone's interested in living forever, my favorite means to living forever is to think about the world beyond yourself, invest yourself in the world beyond yourself.
So when your self dies, that thing you love keeps going.
Anyway, this is where it gets really, really fast in the relationship between self and
other and what to do about that.
Religious thinking, spiritual pursuits, this is what can open up when you admit
that you're freaked out to be dead.
It's such an interesting way you explain the idea of, again, for me, it's very clearly
the latter, not the former.
And I guess that's just because I have the luxury of medical training.
And I understand where and when one can draw the line for themselves with respect to what
measures are taken, how heroically they are, and obviously the power of medicine to greatly
reduce the suffering.
But it's this other piece of missing your family, missing out on future generations, leaving
behind people you love.
To me, those are the hardest things.
And of course, your point is you can live through those things,
but you have to do something about it.
It doesn't happen automatically.
You have to make the investment.
And the irony is, the time to do that is well we're alive.
Amen.
It's gave me chills.
You've just completed the circle.
Yep.
Which almost suggests that palliative care
needs to begin much earlier in life.
Amen. Which is why it's such a shame that we forced all on Keep It At Bay when it's a
thing that could help us so, so much. Whether actually a powder of care referral or a powder of
care mindset, but one way or another finding our way into this subject while we've got plenty of
road in front of us is absolutely the right best way.
You know, it seems that there's a continuum where you have life, you have acute illnesses,
more life, acute illnesses, chronic illnesses, life and death.
The hospital and the entire medical system is really only geared to treat with the acute problems.
It has virtually no tool dealing with life or even chronic conditions, and certainly
not death.
I don't want to get into the why is that the case.
We can sit here in debate about incentives all day long.
I think it's straightforward.
I mean, I think we understand that the incentives
are such that reimbursement follows the treatment of acute conditions and to some extent chronic
conditions. I guess the more relevant question is, what would have to change to realign the
focus of resources to make it such that medicine could be more about helping people live and
then helping them die when that time comes.
As a part and parcel of helping them live, then relate those two things.
So I think a couple answers to your question.
I think one is, and a big office somewhere at HHS when they're trying to redesign a healthcare
system and even
redraft a mission statement. I would challenge HHS to read the definition of
powder care and tell me why the definition of powder care isn't the mission of
all of healthcare. So one answer to your question is you can see the both the
strengths of the healthcare system and the trouble that comes from it is a
design flaw because you and I both know healthcare is littered with people who really really care and are trained at the hill. And yet
the care we're able to meet out too often falls short. I don't think the problem is the people
and the problem is there's a design flaw. And for my money, the design flaw has to do with the system
is focused on disease, not on the people dealing with
disease.
And the second you make it about the person living with the disease, not the disease
itself, well, you've welcomed all sorts of things into the mix beyond just their physiology
and anatomy.
You've welcomed their social, emotional, and spiritual lives into the mix.
You've also welcomed your humanness into the mix as being relevant, you as a clinician
being relevant beyond your technical skills, which will push back on burnout for one thing.
You've also made yourself and served as a human condition, which means for us clinicians,
the expectation management, we're not expected to work miracles. We know that it's someday
everyone's going to die and that that's not a failure for us. We didn't, the person didn't succumb to the
disease and we doctors didn't fail to make them live forever. The ones we
align healthcare with the human condition and with serving human beings, so much
of the trouble will work itself out because we will be designed around the
right thing. So that's one answer to your question.
I think it's that simple and that hard on some level.
And then medical scores, medical training would have to follow suit and revisit how we think
about these things.
I mean, for example, think about your medical school training, Peter.
100% of your patients die.
Any rotation that you ever go through, no condition befalls 100% of your patients.
But 100% of our patients suffer.
100% of our patients die.
And given that, wouldn't you think
that a responsible medical school curriculum
that we would start an end day one
and the last day would be around conversations
like we're having now?
The power of care would not need to be a specialty.
It would be baked into how all of medicine works.
So for my money, that's a major thing that needs to happen.
Policy will flow, etc.
I also think to make that happen and to not wait for that happen, that we, human beings,
we people, irrespective of our professions, need to kind of come together as a society
and to take these issues on, especially
right now when we're also polarized and so divided and so aware about the things that we
don't have in common with each other.
What a perfect time to revisit where we actually do have so much in common and where we do
have so much in common revolves around everything we're talking about right now.
Black, white, rich, poor, young, old, I don't care. These issues affect all of us. This is a genuine way for us to work on the points in common.
So we can make political comments about why now is right for that. The healthcare system
itself can't keep doing what it's doing and can't keep death the enemy because it's
going to lose that war again and again and again.
And the one way you can keep score on that is just cost.
Yep.
Cost alone is a metric by which we are losing.
Healthcare is obviously one of two things that will either bankrupt the United States if
they can't print their way out of it or create sort of seismic economic shifts.
And I do think that part of it is, as you said, we've taken the wrong strategy in a war
that probably ought to be deemed more of a truce
than put our resources in the wrong place.
Can I ask you a question on that, though?
Yeah, yeah.
Why would you say that we are so focused on acute care
and not on chronic care?
If most everybody is gonna die
of most of chronic conditions, et cetera. I should say, I think we do focus a lot on chronic care. If most everybody is going to die of most of chronic conditions,
etc. I should say, I think we do 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 where medicine is very good is on acute care, and I think where
medicine is really bad is on chronic care. And I think those are the two things that works on.
It has nothing to do with sort of healthy life to prevent acute or chronic issues, and
it has nothing to do with death.
So that's sort of, yeah, just thanks for asking me to clarify that.
But yes, I think we disproportionately focus on chronic despite our relative lack of success
with it.
Why do we keep doing that?
Do you have a sense?
Well, I think in some cases, we don't know what to do to prevent the
condition. So certain conditions never show up as acute. Cancer does not show up acutely. I shouldn't
say that. It kind of does, but it doesn't really fall under the rubric of acute care medicine,
the way appendicitis does. But we don't really have a great sense of cancer. You know, we know
smoking and obesity are the two greatest risk factors for it, but there's
many other risk factors, including chance that we probably don't understand.
And even the ones that we do understand, like obesity, we don't really have the infrastructure
to help with prevention.
So you talked about how in medical school, we didn't have a single course on dying.
We also didn't have a single course on nutrition or exercise or stress management or the psychology of
eating in our relationship to food and how you can help patients make better choices with nutrition
and things like that. So I don't buy the narrative that we have an obesity crisis just because sort of people are fat, dumb, and lazy. I think we live in a toxic food environment and we don't
have a healthcare system. It's really geared to help people out of it because frankly, physicians
aren't compensated to do that. You just don't have the billable structure in which you can
do these things. So instead, I think we focus on where our tools are. And our tools are
drugs. Drugs become a good tool to use in a chronic condition setting. Right. I think I'd add to
that. Maybe encapsulate this list three ways. One is the design flaw that we're the phobic
and we see ourselves as victors when we cure something, when we fix something.
So chronic illness, by definition, is something that we can't fix.
So I think it presents us with a sense of failure, which I think is an emotional barrier to
developing it further.
That's one big piece of the design flaw.
I think it's second big piece of the design flaw is the way the business of medicine
goes.
We are left to see medicine as a series of transactions, which in acute care, it makes a lot more sense.
In chronic care, it becomes part of the experience.
You're not kicking this thing out of the body.
You've got to learn to live with it.
So, illness and health becomes protracted over time and therefore becomes an experience,
but we're wired for transactions.
We don't have the systems and structures in place
to be cultivating experiences together with our patients.
That's the second thing,
and I think the third thing is this reimbursement
and we are incentivized away from thinking about care
over time.
So anyway, I just wanna complete that question
for both of us.
I think that's why we're at. Yeah, I appreciate that structure that you've put to it. I want to ask you about
patients that you interact with during hospice. So these are now going to be the
patients who are probably in the final months of their life. And that could be
cancer is obviously a very common pathway that you'll interact with
hospice patients. Is that the most common proximate cause of death for hospice patients in the United States?
Cancer?
Yes.
No, it is no longer the majority.
Until recently, it's less than 50% now.
Progressive neurological illnesses are on the rise, cardiovascular, organ failure.
But yeah, fewer than 50% of deaths, the hospice deaths are cancer at this point.
What do patients say most to you?
When I was in medical school, I did a stint at the National Cancer Institute,
and then I went back there for my formal training fellowship,
and people that came to the NCI to where I was,
and I suspect to elsewhere in the NCI,
were generally patients who had progressed through all forms of treatment, all standard treatments.
So they had metastatic disease that had failed to respond to any form of treatment.
So therefore, they were at the NCI for experimental treatment.
And at least for the type of cancer we worked on, the survival was between 10 and 20%, meaning
80 to 90% of the people we met were going to die very soon within six months, typically.
I remember obviously feeling very attached to many of them and also spending time with
them and asking them questions like, what do they wish they could do?
How do they want to spend this time that they have left?
And sometimes they would share regrets.
And I always remember thinking, I wish I could write a book about this, just interviewing
people like this, but it felt, it didn't feel right to me.
It was one of those things that just felt like, it should be shared, but I wouldn't know
how to share it.
I suspect you've had more of those discussions than you can remember, and I wonder what
things you've learned from them.
These vicarious deathbed moments, I have a lot of them.
I think a lot of us in this field, and maybe a mess in general,
like to say how privileged we are to be in this position,
how lucky we are to have our patients let us in
to this very poignant moments.
It's so intimate.
So yeah, there's a lot to be said for those moments,
including you're per wanting to protect those moments
and not necessarily ram them into a book,
although they're sure as a way to do that.
Skillfully, the world could benefit from it,
but the regrets that pop in that I see at the end of life,
the conventional ones are sure you hear people say things
like I wish I had spent more time with my family
than at the office, and things like that.
You know, a syrup that comes up,
but in a way, by some, someone's actually in their deathbed,
and again, these days, most of us dying from chronic illness
is that means we have some protracted period of time
to think about our death, specifically.
We will be introduced to the thing that will end our life
months or years in advance.
And so by the time those folks get around to their end of their life,
they're beyond the sort of pat regrets.
There shouldn't work so much, for example.
Oftentimes, if they're regretting anything,
they're hanging on to anything, including regrets,
it's more likely, I wish I had loved, dared to love more.
I wish I hadn't been so afraid.
I wish I had just let myself be myself.
I wish I hadn't been so hard to myself
or criticize myself.
Those regrets, they all have something to do in common.
And the commonality is, it's sort of like,
oftentimes the common pathway areas,
they wish they had let themselves come to terms
with death earlier in their lives
because it would have changed the decisions they made.
I think one of the things that people come to realize
on their deathbed, and one of the things that I've saw
at getting close to my own was really grasping it in our guts.
That death is coming no matter what we do.
Even in your work, promoting a longer life, as you said earlier, doesn't mean that death
isn't still coming.
Just coming later.
Given that, this is the freedom that comes from reckoning with death, which is, if, okay, you're telling
me that no matter what I do, if I'm a good person, a bad person, I eat my veggies, I
don't eat my veggies, I smoke, I don't smoke, whatever it is, either way, if I'm going down
eventually.
In other words, if failures, in this way, quote unquote, failure is guaranteed.
And in some ways, the pressures off, like the pressures on for me to take my life seriously,
but the pressure is off for me to get everything just perfect.
There's this bifasic effect that I see in myself
and some of my patients, which is,
they see the grip that fears had on them,
distraction is done to them,
and they realize that no, man, the
only thing I have to lose is wasting my time.
So, I'm not going to waste my time.
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 what I want to do, because if failure is guaranteed, then I'm no longer
doesn't make much sense to be afraid of failure anymore.
It will not be limited by it, because I'm going to fall either way.
So mind will try.
So death gives me the reason to try and gives me the reason or the way of forgiving myself
for quote unquote failing.
So really in this way it can be a real liberating force.
And I see people grok that and the regrets have something to do with not coming to that
place sooner.
You presumably encounter patients who have the sort of proverbial dying wish.
Never saw the Grand Canyon and I really want to go and see it.
Never seen them on Alisa and I want to see it or I've never taken this vacation with my
family.
How much of your work is trying to help patients navigate
those wishes medically. For example, is someone strong enough to physically go to the Grand
Canyon and can you put in a last ditch heroic effect to get them there? I mean, how much
of that do you do? Some involve with an organization called the Dream Foundation out of Santa Barbara
and what they do for living as an organization called the Dream Foundation out of Santa Barbara,
and what they do for living as an organization is help make those trips to the Grand Canyon
or whatever those final wishes actually happen for adults in this country. It's beautiful.
And I have been engaged in some of that with some patients, whether in a handful of occasions
where someone was here who may have lived here for a long time, but grew up elsewhere
and wanted to get home
as it were back to the Philippines or back to somewhere else
and helping this sort of one last trip happen.
I've been involved with that a lot.
I've been involved with some bedside weddings
in a hospital just before someone died.
I've been involved with some trips
down to the Grand Canyon.
So some of that is true.
Like some of my job, especially if I can be
engaged with someone soon enough, while there's still energy and time to work with,
then making those sort of last wishes happen is great. It's fun. It's great work. It's powerful.
It's delightful and stunning. But I will say, and so I do some of that. But for whatever reason, I'm more engaged with people
around letting go of that wish or that need to go see
the grand canyon or whatever it may be of letting go of the
things that they're not going to be able to do or at least
rocking that fact.
So yes, sometimes the response is to mobilize energy to do that thing.
I'd say more often and right alongside that wish is also helping them see the world and see
themselves in the world in such a way that they can let go of those things that they never got to
because they realize the things that they're not going to get to is a very long list. And on a developmental level,
you've got to find a way to come to terms with all the things you're not going to get to do.
So that's where I spend a lot of my time.
Movies lead us to believe that people become enlightened and hyper transcendent at the end of
life. But my experience with patients at the end of their lives
is that oftentimes they're so heavily medicated
that they're not really even able to communicate much
with their loved ones.
And that's the price we'll pay to keep them comfortable,
especially patients with metastatic cancer,
the pain would be so debilitating,
it would be inhumane to let them suffer without
those medications.
And frankly, in the circumstances, when we're lucky enough to do so, we can get expressed
direction from the patients before they get there that, hey, I don't want to suffer,
and I don't want a breathing tube put into my chest.
I don't want to be intubated, and I don't want you to do chest compressions on me
when my heart stops.
I just want enough medicine to be comfortable.
And so you don't have these sort of diving
into a person's soul in the last day of their life kind of thing.
Is that your experience also?
Absolutely, it is.
There are exceptions, but not many.
The last day or two of life is not necessary.
The greatest time to be digging into someone's soul. And I will say, you're right about
medications as a big piece of this, but I will also say, just for your listeners, a refinement
here, again, pushing on the either or kind of thinking. It's not either take meds and
be comfortable or don't take meds and be lucid. Intractable pain is a great root to delirium, and even if you're not delirious, trying
to have an exchange with someone when your body is an absolute agony, is a pretty quicksotic
experience.
I will say that another plug for pound of care is with a very expert and judicial use
of pain medications, but we can often thread a needle and get someone comfortable enough, but not so overly medicated that they can't interact.
We just want to name that refinement a little bit.
Either way, pinnacle your point still taken, the very, very final hours of life, you're
not generally reviewing much, you're not having big philosophical conversations at that
point.
In so many ways, whether by medication or force in the disease,
it's too late.
Which I think speaks to what you said earlier that there really is no time like the present
to say what it is you want to say to people who matter.
It's not the movie where your final breath is asking for forgiveness or telling somebody
you forgive them or that you love them.
That's very unlikely to happen. That's very unlikely to happen.
As is anything cleanly, like closure, I love pointing this out to folks.
One of the things in my world, in the Pad of Care world,
one of the things you want to forstall with knowing so much pain is coming
as you want to forstall the avoidable regrets and avoidable pains.
But you're not necessarily going to get there and your final breath.
Tell me the story about Randy Sloan.
How did you meet him?
Randy was a beautiful young man.
So I met Randy.
He worked at a motorcycle shop.
So in the first met, Randy, one of my wishes for myself, once I became an amputee, was
to get on a back on a motorcycle at some point.
I've always loved biking.
I'd always wanted to get on back on a motorcycle at some point. I've always loved biking. I'd always wanted to get on a motorcycle.
Everyone's miles three through a motorcycle shop
and see if there was any way to convert a bike.
Every time I walked in,
I couldn't get anyone to take it on.
I think they all just freaked out.
No way, dude.
We're not putting you on a death machine.
Never I didn't try that hard,
but I never could get anyone really interested in.
One day I walked into a place called Scooter, Rio West here in San Francisco and just met a wholly different
energy. And these guys were actually interested in trying to make it happen, saw it as a creative
exercise. And that's exactly the spirit you need. And Randy was the mechanic who put his
hand up and is wanting to help make this happen.
So Randy, he was a bike mechanic and he took my bike and he managed to figure out a way for me to
operate it with just one hand by a series of modifications. And so he helped make this dream come true
for me. And it was beautiful for both of us. He loved making it happen and I sure loved that he did.
Then with this gorgeous like teary moment when I picked up the bike and
rode off in the sunset. So it was just a beautiful but you know time limited interaction with Randy.
And then not that much longer. I can't remember now.
Monster maybe a year later. And Randy was in his mid-20s, by the way.
Randy ended up somehow his mother reached me and let me know that Randy was in the hospital
and something really big time was going wrong.
And Randy and I had remembered each other because we were both moved by this story and
his mom reached out.
And he knew I was a doctor.
So blah, blah, blah.
Eventually, I got to Randy's bedside.
And Randy had
been walking up the hill in San Francisco, found himself a little out of breath, went to
urgent care. They took an X-ray and he had turned out to have mesothelioma, which is essentially
unheard of in someone in their 20s. I mean, this is a cancer that is almost exclusively associated
with long-term asbestos exposure in elderly folks.
And I don't know enough about motorcycles to know if there was asbestos in them,
but even if there was, you'd think this is something that would still be 40 years later.
You're right. So total freakish. And even if you had had exposure,
it's rare to find exposed to asbestos these days, much rarer.
But at that age, you just don't have even time to develop the cancer.
It takes a while after exposure.
So just a real mystery,
how this young man came down with widely metastatic music
at Leoma, even at the time of diagnosis,
scans revealed it was in his brainstem.
He's one of these guys who went from walking,
talking to that day was in the hospital on Death's Door,
and people scurrying around trying to make a plan, what to do.
I met him.
I walked in in that situation.
And by the time I even got to the hospital, he had had a dose of whole brain radiation
because brainstem lesion was very precarious and they needed immediate care.
So he had already been radiated within hours.
I walked into a situation. Here's a young man trying to deal with this diagnosis, come
to terms with it, and all that it meant.
And it meant that his life was measured in weeks at that point, right from the time of
diagnosis.
So I became his proud of care doctor, and we were together for the rest of the time,
and we got him into, I saw him into, at that point, I was working at Zen hospice project
in San Francisco.
He moved in there with us and he played his life out with us.
It was an amazing experience.
I think one of the most amazing things about it besides the medical like Misiathiliyoma
and this young man blah, blah, blah.
The really interesting stuff was how Randy responded to this diagnosis.
And he and his mother and I were all, this was two, didn't make sense.
It was too soon.
So we were all gearing up to think that somehow treatment was going to help him.
A sober conversation, there was nothing that was going to help him at this point, except
for love.
That one dose of whole brain radiation really threw him for a loop.
I'm trying to talk to him about the fact, trying to bridge him to the point, to the realization
that he has no good cancer fighting options. And you're watching this guy's world shrink miserably by the second.
And to find a way out of this tailspin and to find a way forward, we had our beautiful
kind of powder of care conversation, which included a question in there eventually,
about like, what was really important to him? What about him that he want to protect as his body was falling apart?
What did he love most about himself?
Somehow the question to Brandy became, what are you most proud of in yourself?
As a young man in development, it seemed like an important question.
And his answer was immediate.
His answer was, I want everybody I ever come into contact,
know that I love them.
He answered the question immediately.
It was remarkable coming out of a 27 year old bike mechanic.
So there it was, I said, okay,
we need to keep you as comfortable and conscious as possible
for what time you have,
and be in a position that your friends
and people can visit you.
So that meant, let's get you in the hospice house out of your teeny apartment, walk up apartment where you have three roommates.
Let's get you into this hospice house. Let's get you out of the charade of treatment. Let's
treat your symptoms and open up your door and get as many people in here as you want. And
that's what we did. He just had a steady stream of visitors. He just basically became this radiant beam of love
for what time he had and just made sure
to love as many people as he humanly could.
And with that, his mother and his stepfather came out
and got married at the hospice house around the time he died.
He got in the bay one more time for a swim.
He got to be with his dog, and he let everyone know
what Randy meant was love, and that became his legacy,
and he died smiling.
And quickly, this all transpired over what felt like hours.
What role does youth in Asia play?
I ashamed to admit I'm a little bit ignorant
about the legality of its state by state.
Obviously, I know that Oregon is a state where it's legal.
How many states in the US have legalized euthanasia or some former physician-assisted suicide?
I believe the number is now nine.
I have to double check, but there's still, it's unfurling as we speak.
There's first going on in every state house.
But I'm pretty sure the number is nine. The first was Oregon in 97,
California in 2016, and others have followed suit. Montana, Oregon, Colorado, California,
DC, others that I can't remember right now. It's coming slowly but surely state by state.
Has it demonstrably changed the practice of hospice or palliative care?
Or is it almost moot because so much of
threading that needle as you described it?
Effectively, it doesn't happen maybe in as dramatic a fashion, but in the end of life care that you're discussing for example and in the case of someone like Randy.
If Randy had said, let's say a few weeks sooner, I want to go down the path of euthanasia, what would have been different than what he ultimately ended up doing at Zen
hospice?
There was a moment there.
I could imagine he would have really elected it.
The world was falling apart too quickly.
It was too painful for a little
while there for randid to see straight. The process we can talk is a little bit of wonky.
There's a two week wait. You need to have two physicians, you need to write a letter.
Their fail safes. Because what the state wants to avoid is that making it too easy for people
to do something that they otherwise might regret. Because I think many of us have moments
where we just as soon get off the planet,
especially when we're dealing with something
like a terminal diagnosis.
It's a funny thing where life's ending soon.
Some folks have this response, okay, I'm dying.
So they're okay.
Now that I realize I'm dying,
well, now I can't die soon enough.
It's almost like once you pierce the veil
of indefinite life,
which people really long for,
on some levels think they long for, then some of them will think they long for,
then all of a sudden they're terminal
and then they can't die soon enough.
It's sort of a final act of control
and a bit of an FU to death.
Well, you think you're inevitable, I'll show you.
It's the quit before getting fired impulse in some ways.
There are other ways or many things that drive the impulse,
but that's a sort of a side note. But answer your question. I mean, if Randy had acted this procedure and ended
his life, hastened his death before nature otherwise would have had it, well, Randy would
have died sooner. Randy would have been able to schedule the moment of his death. It would
have been something. And on some level that could have served him.
But the realization that Randy had a mission to sort of prove love, to show love, to
be love, he had a reason to keep going. There's a moment where if it had been too easy for
him, he probably would have elected to hasten his death. But because he didn't, and because he let it play out a little bit longer, he got to a lot more
people. He had a lot more final moments with friends. He got into the bay, and he had
the pride of playing his body all the way out. He played every cell all the way out, which
for Randy served him very, very well. And I think it makes the point,
one of the problems with the dying laws. And let me just pause there too, by the way, Peter,
the language of physician-assisted suicide has gone away in favor of aid in dying or
assisted dying to get rid of the word suicide, emotional baggage around that word. And then,
importantly, these laws are for people who already have a terminal diagnosis
and for whom death is coming soon.
So it's importantly different.
But if we had just seated his wishes and said, oh, sure, you want to die, Randy, sooner
and later, yeah, we'll make that happen.
Just in the name of helping him not suffer, we've made that happen.
And it would have been a mistake in this case.
Because as I think a lot of us know intuitively or explicitly,
a meaningful life, a good life is not the absence of suffering.
Suffering teaches us too much.
It's too important a vehicle for us, actually.
A full life requires it.
And I don't mean to cascade anyone who does choose to hasten
their death for some people, it is exactly the right decision. When it is seen as a meaningful response, not a
flight from suffering, but a moving toward something meaningful. And for some
people, a final act of will is very meaningful. But for more people, what ends up
being more meaningful is them being more than their pain, being more than
their suffering, and letting their body play that sounds all the way out,
and dealing with and adapting every moment along the way,
trimming their sails along the way, letting themselves be changed,
letting themselves grow right up into the moment of their death.
That's actually a more meaningful pursuit for the bulk of people.
It's really that pain matters more than being numb.
Yeah, yeah.
When it comes down to it, when it comes down to it, for most of us, and this is a realization
that came clear to me when I was in my hospital bed, pain is very obnoxious, and I don't like
this stuff.
We can be more than our pain.
Pain isn't ultimately avoidable in a full life, like I said, and it can teach us
some things. And really, I'd much rather feel some exceptions, and there's ways to paint this
otherwise. But in general, I'd rather feel something, even if it's pain than feel nothing.
Annesesia is a way, an numbness is a way to die before we have to die, that seems to be a bigger tragedy to me than is death
in the first place.
Have you had any experience with the use of psychedelics in end of life care?
Are people doing any research on this?
Obviously, I'm aware of the research on psilocybin in patients with cancer, I believe there
was research done,
helping with end-of-life depression.
Are you aware of any other agents that are used
besides psilocybin for that research, anything with MDMA?
I'm not sure if, which obviously I know MDMA
is being used to treat PTSD, but what is the scope
and breadth of that look like today?
Substances being researched along these,
for end-of-life anxieties, fears of death, studying
a patient population dealing with terminal illness or serious illness.
I can't quote to you all the latest details of studies.
There are studies ongoing for Yester Silasimon, but also for MDMA, and then related, similar,
but different is ketamine.
The way ketamine is proving its way to therapeutic,
new therapeutic values.
So yes, I'm most excited around the research
run MDMA and psilocybin.
And the research so far, we got a little ways to go,
but the data are pretty darn stunning.
The impact is huge and offers access to psilocybin stuffs
the most remarkable.
I think one guided session, we're setting matters, dose matters, the integration process
matters, it's not just people going out in the woods and having fun.
But with this process, there are really no adverse events to speak of.
People who are gripped by a fear of death, gripped by a sense of meaninglessness and not belonging
and not feeling connected, come out of this one session, losing their fear of death,
feeling part of something larger than themselves, having a totally different relationship to fear.
This is one session.
The effect lasts for months.
It's not just a chemical effect per se.
We don't have anything remotely
like this to offer in medicine. The closest thing I have in my conventional work as a doctor
is someone comes to me with death anxiety, two things I can do. I can talk them out of it
and try to, with enough time, we can find a new way of seeing themselves in the world,
a framework that allows them to feel like they belong in their own framework. That takes time if we can get there at all.
The other thing I can do is if you're really anxious, well, I can numb you out.
I can give you Valium or whatever else.
I can put a wet blanket on your system.
That's the best we've had to date.
I don't have an intervention that helps me connect you to meaning, connect you to the
cosmos, but these medications are offering
exactly that and it is beautiful. So we've got a little ways to go, but I am thrilled for this
potential. Are these tools the things you're probably most excited about in your field in terms of
being able to kind of revolutionize how you're able to help the patients who want or need that type of intervention?
Or is there anything else that even rivals this?
Yes, there are two things.
So, strictly speaking, because of medical medication, medical physiology, ish, kind of overlay, the
medical lens, I would say the research going on around these substances, the psilocybin, MDMA, ketamine, et cetera,
are my favorite thing going.
Maybe even bigger, maybe with other things
that gets me more excited is the work going on
on the periphery of healthcare and outside of healthcare.
That conversations like the one you and I are having, Peter,
and I thank you for it up and down.
One of the things we're doing is we're kicking the conversation beyond just medicine.
It's like we were saying earlier about the design flaw that medicine focuses on the disease,
not the person.
One of the great things that happens when we focus on the person is that we in medicine
become part of something larger than ourselves, and we can partner with architects and artists
and designers and other disciplines
and death dualas and quasi medical folks and alternative and integrated medicine folks.
All of a sudden we are part of a much larger family working on behalf of something much
larger than even medicine.
And that's where I get really excited that people, that society, that culture is waking
up to these issues.
Death has become a medical issue.
It doesn't belong there.
Suffering in death are way bigger than medicine.
Medicine may have something to offer this, getting back to your question.
The thing that I'm more excited than anything else is the rise of commerce, multidisciplinary
work, other institutions and vehicles tuning into this idea of life and death,
so that medicine doesn't have to carry all that water by itself. That people are going to start
taking care of people and not handing themselves over to doctors to do the trick.
PJ, I really want to thank you because your work and the work of people like you has actually
had quite a profound impact on the way I think about life.
I'm in the process of sort of barely putting the finishing touches on a book about longevity.
And I've kind of come to the realization lately, it's very difficult to do this without
writing about death in some way, but not as an enemy, but more
in a manner that is sort of symbiotic with life.
So maybe not quite a friend, but certainly not a hostile combatant.
I just think the way that you've been able to speak about this so eloquently for many
years now has been a great benefit to not just the people you've helped, which is obvious.
I think those of us who are presumably a little bit further from needing that help.
Peter, I can't wait to read that book, man.
And that is right on.
I think you will help so many people, just this frame shift of finding a way to include
death in your view of reality is one of the great services you can do the world, man,
and I, oh, I can't
wait to read it.
Well, thanks, B.J., and thanks more than anything else for all of your time this afternoon.
Thanks for having me, Tom.
Thank you so much.
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