Welcome guys to episode 54 of Behind the Shield Podcast.
My name is James Gearing.
And this week I wanted to discuss a topic
that I've really, really wanted to delve into for a while.
And this particular guest was the person
I wanted to talk to about it.
So the topic is death.
As far as the end of life in an accident like we see,
as far as a healthy end of life,
and then end of life in a hospice or palliative care setting.
So Dr. BJ Miller, I was first exposed to him,
listening to him on the Tim Ferriss podcast.
He also did a TED Talk, which absolutely blew me away.
And at the time when I listened to the interview,
he was working with the Zen Hospice Project.
The premise was that the patients in the hospice
had a homely environment and every single day
were given the fullest day of their life,
even though they were counting down.
And contrasting that obviously
to the sterile hospital environment
that many patients do pass away in.
So I really want to delve in that side.
I had nursed my grandfather in hospice.
I'd seen several fellow firefighters recently
in hospice care before they passed away.
So that was an area I wanted to delve in.
And then also something that we talked about
because he wasn't exposed too much to what we do,
is how do you apply palliative care
in the pre-hospital setting?
How can we make our patients more comfortable?
How can we interact with the family after we lose a patient?
So there were so many areas I want to talk about
and this was an absolutely fantastic conversation.
So before we go, as I always say,
rate us on iTunes, give us those five stars
and then share these episodes.
And then let me know, give me feedback.
Let me know what you think of the show.
Let me know topics that you want to talk about,
potential guests.
I really, really like to have this interactive relationship
with the people that listen to the show.
So without further ado, I introduce to you Dr. BJ Miller.
Enjoy.
["Spring Day"]
Welcome to the show, BJ.
I just want to preface this whole thing
by saying that I listened to you on Tim Ferriss' podcast.
I went and watched your TED Talk
and I reached out to you guys.
And I know it was right when you were about
to take some time and write a book.
So I think it's been about eight or nine months
I've been waiting for this interview.
So I am so excited that we're sitting down
finally getting to talk.
Yeah, thanks James.
It's really nice to be with you
and I really appreciate your patience.
I'm glad we're finally here too.
Fantastic.
So where are we finding you geographically?
So I'm sitting right now in my kitchen
in Mill Valley, California.
Brilliant, excuse me.
Is that the Northern California?
Yeah, it's basically a suburb of San Francisco.
Just hop, skip and a jump over the Golden Gate Bridge.
All right, and were you born and raised
in that part of the country?
No, I'm very proudly from Chicago.
My family, we moved around a fair amount
and I lived many different places
but Chicago is sort of my home base.
Okay, and just to kind of set the background.
So what was your family unit like growing up?
Well, sort of pretty typical,
sort of middle-class suburban,
you know, two parents still together,
two children, a dog, you know,
practically a picket fence kind of scene in a lot of ways.
My dad worked in sort of business management
and we followed his work around.
But yeah, mostly a suburban,
suburban privileged background.
Okay, and back then were you athletes as well?
In and out, you know, so when I was younger,
I was interested in athletics and had some facility for it
and then I was a very much a late bloomer.
So it's like all my buddies became men
while I was back, I was still a little kid.
And so that kind of changed my athleticism
for a few years and then late in high school,
I caught up and rejoined competitive athletics.
I rode crew in college just before my injuries.
So athletic-ish.
Okay, it's funny, I had the same journey.
I didn't have what they call the growth spur
until I was 18, so I was like everyone's little brother
when I hang out with my friends before that.
Yep, another feeling.
All right, so well, you just touched on your injuries.
So I wanna kind of address this right at the beginning
so that the people listening can paint a picture.
So I know in your TED Talk, it's a video piece,
the audience sitting there obviously
have a pretty good idea of somewhat of your history,
but for the listeners, can you tell me what happened
when you were in Princeton and the injuries
that you suffered there?
Yeah, so really it was sort of a very much
an inflection moment for me in my life.
So I was 19, this was November of 1990,
coming up, actually November 27th,
coming up on my 27th anniversary.
But yeah, we were just back, so sophomore year of college,
I was at Princeton, as you say,
and we were just coming back from Thanksgiving holiday
and a couple of my dear friends and I,
guys I rode with, we went out on the town at night
and we're off to go get a late night sandwich
and we happened upon this commuter train
that runs across, that runs from Princeton
to Princeton Junction.
It's a commuter train for this little bedroom community.
And anyway, just climbed the train, just parked there,
just sitting there, we had done far dumber things.
We just thought we'd be climbing like a tree
or a jungle gym.
But I popped up, when I stood up, I had a metal watch on
and this was a train that runs with the wires overhead.
And so when I stood up, the electricity,
I was close enough to the power source,
the electricity arc to my watch and entered the arm
and blew down and out my feet.
So that all resulted in burns, obviously,
that necessitated amputation of my left arm and both legs.
Right, and you have prosthesis on all three of those,
is that right?
Yeah, yes I do.
Daily, sort of like you guys,
you might put your shoes on in the morning,
I put my legs on in the morning and take them off
when I get in bed for the most part.
It's very much akin.
My arm, the hand is a much more delicate instrument
than is a foot.
Foot's kind of just this dumb platform
and it's pretty easy to replicate,
synthetically with a prosthesis, but hands are more tricky.
And I've kind of gotten out of the habit of wearing
an upper arm, upper limb prosthesis,
except for when I'm biking.
So if you saw me now, you would see that I'm not wearing
an arm and most days I'm not.
I just use it for ad hoc purposes.
Right, now when you say biking,
is that the motorcycle that you talked about?
Yeah, yeah, so too.
So I always loved two wheel action, always.
Grew up on a bicycle, raced BMX, all that good stuff.
Yeah, and then more recently, last couple years,
maybe four years now ago maybe,
so I finally got a motorcycle,
which I had been dreaming of for a long time.
So yeah, so I use this arm for both motorcycle
and mountain biking.
Yeah, because I heard you talking about
how they engineered it and you control most of the controls
with your left arm, is that right?
I assume it would be your right arm.
Yeah, my right arm.
So the left arm is gone.
So the left arm, I have this specialized prosthesis,
a guy named Mert Lawill, an old motorcycle,
motocross racer.
He happens to live around here and happens to have,
for whatever reason, begun machining this contraption
for bicycle use.
So it looks like a ball and hitch, like a trailer hitch.
It does a ball fixed in my prosthesis
that snaps into this cup that's mounted on the handlebar
and that allows all degrees of rotation.
So I'm kind of clipped in like you would be
in like a ski binding.
So if I wipe out, the arm pops out.
So I can lean into the bars, but it's passive.
There's no, I can't, there's nothing I can control
on the left side.
So my motorcycle mechanic slash friend slash patient,
Randy, he figured out a way to splice the brakes
into one lever and move the turn signals and horn
and everything else to the right side and build a little box
so that's within reach of my thumb.
And we bought a bike, an Aprilia 850 Amana,
which is essentially a semi-automatic.
You can put it into fully automatic mode
so I don't have to worry about a clutch.
So it works great, frigging a blast, love it.
Brilliant.
Now I know when I've seen you on the video so far,
you look like you're in great shape.
So do you, what kind of exercise do you use now
with the challenges of losing some of the limbs?
Well, I love, so I've always been,
for whatever competitive sports I've ever done,
I honestly don't love the competition.
I'm more intra-personally competitive and it's been fun.
So I guess I say that, I don't mean to paint a story
like I used to be some really competitive athlete
who no longer can do that and miss that.
I mean, I love solitary sports.
I just love moving my body.
So, but these days, and answer to your question, James,
most of the exercise I do is bicycling.
I get out, I live in Mill Valley,
which is sort of a home of mountain biking
and I can go right out my door.
And that's what I love, I take my dog out.
That's my go-to thing.
When I get my act together and figure out my life soon,
I wanna get back to the gym.
There's a trainer I worked with in this last year.
I used to kind of make fun of the idea of trainers
and now I totally appreciate what they do.
And I worked with this woman who kind of set me up
with all these elastic bands and balls
and not heavy weight stuff, just smaller core exercises.
And I've loved it.
So I need to get back to that.
I haven't done that in a while.
So to answer your question though,
the main thing I do is bicycling.
Okay, yeah, because I'm seeing a huge shift now in
the imagination of coaches working with adaptive athletes
and obviously the mechanics that they come up with
as far as creating something specific for a sport,
but even just using what we thought
were very one-dimensional pieces of equipment in gyms
and kind of mesh them together to be able to get around
a missing limb or wheelchair use.
And I love the inventiveness of some of the gyms
that you're seeing now.
Oh, so I totally am with you.
I think my sense is the US was a little late in doing this,
but essentially what's happened I think is some folks
from a more medical background say sort of physical therapy
have kind of bridged to the world of sort of athletic
training and have bridged sort of the mechanics of both.
So in other words, you don't go for rehab to one gym
and for exercise if you're able-bodied to another gym.
Like there's a lot to be,
there's a lot of interplay between the two.
And my sense is that exercise physiology,
I know this is part of your background James, you tell me,
but my sense is the dogma has changed.
Like when I back was in gyms much more often,
it was repetition, hitting weights in a certain way,
isolating muscles in a certain way.
I think what I think has changed,
the little I've seen that's changed so much is around,
basically we're not working, not isolating muscle,
because that's just not a natural way to use our body.
So there's much more, I don't know, you can feel sort of,
it feels like ballet sometimes in the gym,
it feels like yoga sometimes in the gym,
it feels like it's just a much more dynamic world.
And it's way more, it makes way more sense.
I mean, gone are the days of just, you know,
huge comically large biceps at the peril of everything else.
You know, it's pretty awesome.
So Mike, the woman who trained, who I've worked with,
she's not, I mean, she trains everybody.
And it kind of makes the point that
we're all on some spectrum of ability.
You know, it's not like disabled people over there,
able-bodied people over on some other side.
We're all kind of on some spectrum of ability
and adaptation all the time.
And so to your point, it's been really thrilling to see
inventive ways to work a body, love it.
Yeah, no, I'm loving it as well.
And like you said, there was almost stigma towards,
you know, other ways of lifting other than what ended up,
and now we can look at was the bodybuilding mentality.
But now the yoga, the handstands, the gymnastics,
and, you know, again, working around any challenges,
whether it's a permanent one
or whether it's just a temporary one,
you know, you tweaked an ankle or, you know,
you pull your back out, whatever it was.
And now people are realizing that, yeah,
you can keep moving, whether it's a challenge,
that you're gonna have the rest of your life
or whether it's something you're just working through
and injury.
So I think people are understanding the body a lot more
and realizing, just like you said,
if you just trying to look better in the mirror
and that's your only challenge, you know, your only goal,
then yeah, you probably set yourself up
for failure down the road.
Oh yeah, totally.
I mean, it's so funny to think about all the damage
that we probably did in the name of health and exercise.
We see that a lot in medicine, you know,
what we thought was gonna be better for people
ends up being worse, et cetera.
It just seems like part of our reckoning
that actually the body is something we work with,
not something that we commandeer.
That nature is something we sidle up to, not override.
And that's kind of awesome.
Yeah, and I think people realizing
that the body is pretty good at taking care of itself,
you give it the right environment too.
Yep.
Okay, well, I wanna go back just to that train in Princeton
just for a moment, because you made a very,
yeah, just a passing comment
that most people would have even not paid attention to,
but as a first responder, it kind of,
it's an area that I talk about sometimes.
So when you were on the train car,
and I'm not by any means picking on the first responders
that showed up, but when they got there,
the ambulance guys actually refused to get up
onto the carriage to get you, is that correct?
Yeah, yeah.
All right, so I wanted to make an observation about that.
They could be extremely heroic people
that had just seen something that they knew was dangerous,
but we do have an element in our field
where it's like over safety,
where people just won't go into
a partly potentially dangerous area
because they've been taught not to
and just following it dogmatically.
But if your friends were up there,
you were removed from the energy source.
And then I think you said a campus policeman
went up there to help and passed you down in the end.
I was disappointed as a first responder,
understanding that there's potential dangers
that my peers hadn't been the ones
that going up there to get you down.
Yeah, well, thanks for bringing that up, James.
It's something, it's a detail
that I've never really talked about
because I think you may be the first first responder
that I'm having a kind of a more casual conversation with
outside of a trauma scene.
So it's a really interesting point.
Yeah, that is true.
So my buddy, so two of my,
who are still my like best friends, like brothers,
like Jonathan and Pete were with me that night
and Jonathan ran to call 911
and Pete a very burly superhero kind of dude in every way.
He's the first one, he got up on the train
and he was the one who,
he's the one who took the great risk.
He had no training, had no idea what was waiting
for him up there, whether or not,
he couldn't see what had happened.
So he really walked into a burning building, so to speak.
And I love him for it dearly, among other things.
And then he held me down
because apparently at some point when I came to,
I was just flailing around
and I guess it's pretty common in electrical injuries.
You've just got such adrenaline and heat running through you.
You're just, you know, flailing.
I was punching Pete, just thrashing around.
And Pete held me down while the first responders came,
when the paramedics came.
And to your point, they did not get up
on the top of the train,
waited for the police to arrive as well.
I think this was all happening pretty quickly.
And then a man who then went on, who was promoted,
who was part of the town police, not the campus police.
I can't remember his first name,
but his last name was Dawson.
He became Sergeant Dawson at some point,
and maybe beyond that.
But I think he was promoted in part
because of his bravery that day.
And he got up on the train with Pete.
So Sergeant Dawson and Pete were up there.
The paramedics handed them the stretcher.
They put me in the stretcher and handed me down.
And that's how that went.
Right, yeah, like I said, I won't harp on that point,
but to me, if Pete was already up there,
clearly whatever shocked you at the time
was some sort of arc.
That's, you've got to be careful up there,
but you would hope that you would get up there
and get you off as quickly as possible, get away from it.
But I'm Monday morning, Monday morning quarter back in it,
but I think possibly would have done it differently.
But anyway, I don't want to harp on about that.
It was just a first responder observation.
But what I would like to talk about
just before we get away from that night
and start moving forward with what you're doing now.
As a first responder, again, I found it pretty funny.
So can you tell me when you woke up in the hospital
that that incident you had when you needed the bathroom?
Oh yeah, that was quite,
for some reason I love this memory.
I had no idea.
It's a kind of a bleak one.
I don't know why, but it kind of, I think,
well, I'm presaging here,
but I think why I smile when I think of this story
is because sometimes through the fog of it
your brain shutting down, through the medications,
there's so much about those first couple months
in the burn unit that is hazy.
And it's like I wasn't there.
Sometimes when I hear about it,
it's like hearing about someone else.
And this memory that I'm about to share with you,
it cuts through that.
It really reminds me that I was there
and that I actually went through it.
And in a way, there's a, I think part of why I smile,
I think there's a little pride in it
just for, I don't know, I don't know why, but anyway.
So to your point, your question,
the first few days I don't have really any memories.
That night I was taken to a local hospital in Princeton,
a small hospital, and that we're able
to basically cut these things
that you may know, James, called fasciotomies.
They just cut open the skin to let some of the heat expel
because all that electrical current,
you're still, you've insulated a lot of heat
and trapped a lot of heat in your system
and that can still be doing damage.
So the first order of business is to vent you essentially.
So the local guys cut the fasciotomies
and then pretty quickly I was put in a helicopter
and taken to St. Barnabas, which is New Jersey's Birmingham.
And my very first memory was being loaded
into the helicopter and I was almost 6'5".
And I remember the guys, the pilots,
trying to get me in the helicopter and I didn't quite fit.
And it was like this awkward, clumsy moment.
That's my very first memory and that's sort of hazy.
And then it was about five days later,
well, I think five or six days later,
the night before the first amputations.
And you know that feeling where you wake up from a dream,
like a bad dream, and there's a moment
where you're kind of orienting yourself
and you realize that it was just a dream
and this great relief washes over you.
Do you know that?
Yeah.
So somehow I woke up in the burn unit,
which is not in any way a natural environment.
No way I could have confused it with my home,
but whatever the case is, I woke up in the middle of the night,
opened my eyes, looked around, and thought to myself,
oh gosh, this whole burn thing was a bad dream.
Thank God.
I felt this great relief
and I felt the need to go to the bathroom.
So I pull all the central lines out of me,
I unstrap my arm from the bed, I extubate myself,
you know, somehow thinking this was just normal.
I don't know what I thought,
but I'm just on my way to the bathroom.
And I swing my legs out
and I stand up on these like crispy dead feet
and I start shuffling to the door
to go find the bathroom.
But the Foley catheter line that I had in
at some point ran out of slack.
And it was hanging from the bed rails.
And so as I was practically reaching for the door,
I was putting my arm out, that thing ran out of line.
And so there's this great yank on the catheter
with the ball still inflated.
And so the Foley catheter came like part way out,
not all the way out.
And in that moment, like the pain was really intense
and I just fell to the floor
and realized just like had the opposite effect
that I had minutes ago.
I realized that all of this was real and holy shit,
wow, like it all, it was because everything
kind of came into focus in an instant.
And that was hard.
I was trying to like, I was trying to break the line
to somehow relieve the catheter and I couldn't do it.
And finally the alarms were going off
and finally the nurse came in and got me back in bed.
And that was that.
But yeah, that was my first real intense memory.
I think there's two things to be taken for that.
Firstly, the fact that you've extubated,
I'm assuming that the ET tube was still inflated there too.
So you pulled that giant ball through your throat.
But then the second thing that you can walk
on severely burnt feet,
and clearly it wasn't registering with the pain,
but you pull something grape sized through your pee hole.
That's enough to,
that shows you how painful it is when you get a catheter.
Yep, exactly.
Electrical burns doesn't hold a candle
to yanking a Foley catheter.
All right, well, one thing is what you again,
you said in passing and it struck me
and I'm like, I'd never thought of it that way.
And then this will be the last thing
and we'll move on to everything else.
But when one of your interviews I heard,
you said, I used to be about six foot five.
And that struck me.
I'm like, so with your prosthesis,
you're actually a different height than you were.
Yeah.
That's just, I mean, it's nothing amazing about that.
It's just something you never thought about
that what you were used to being eye level with changes
once you start to walk on your prosthesis again.
Yeah, well, so it's so true.
And then one of the,
there are a couple of things to say on that James.
One is, one of the fun, there are upshots.
I would say, I don't know that I've run across anything
in this world that's all bad or all good.
I think it's everything's a mix
and depends how you look at it, et cetera.
But kind of one of the fun,
once you get past some of the annoyances and pains of it,
one of the fun things that you can do as a double leg amp
is you can tweak your height.
So you can make it up.
You get to say.
And so my native height, it was just too tall
because you can't manipulate the knee and the ankle
in the same way you could an able-bodied leg.
So getting in and out of like movie rows and airplane seats
and just the fulcrum being my balance point
to be that tall just made balance that much more tricky.
So I basically have settled into a height roughly,
roughly six foot three.
And that seems to be a good sweet spot for me.
That seems proportionate enough to my body,
but also makes it a little easier to maneuver
in tight areas.
Right.
Okay, so you had the injury and obviously you went through
probably all kinds of horrendous medical interventions
up to that point.
Was it in that healing process that you began
to consider medicine instead of business as a career?
Yeah, so it was, okay, so sophomore year was the injuries.
So I really didn't know what I was gonna do for a living.
I was very much in the liberal arts kind of vein.
I was learning to learn.
You know, I knew I was headed for a major
in East Asian studies.
I was studying Chinese language.
I probably would have just, you know,
by default followed my dad and a lot of Princeton folks
into sort of the business world.
I don't know.
I really don't know what I would have done.
But when I was in the hospital,
what I did get turned on to was a sort of a new way
of thinking about life and perspective making
and sort of the creative side of being a human being.
And I switched my major to art history.
And that proved to be a really,
that was a very therapeutic and good,
that was a smart decision.
I'm really glad I did that.
We can talk about that in detail.
But to your question, graduation rolled around
and I had been very much in the vein,
not just in a, not so much in a light way,
but in a necessary way of just being in the moment.
I was just, every day was a matter
of getting through the day.
So I wasn't planning a future much.
And then graduation rolls around and I said,
oh, shit, I gotta figure out what I'm gonna do for a living.
And all I knew was I wanted to use my experiences
as a patient, as a disabled person.
The old way of thinking with disability is that something
at best that you overcome
and it's something you put behind you.
Whereas what I learned from my mother
and others in the disability rights movement was,
no, no, no, disability, let it color your worldview.
Don't try to pass, use it, work with it, be proud of it.
It's where it can ignite a sort of adaptive,
creative spark in people, work arounds, et cetera.
So I knew I really wanted to lean into my disability
and work with it and be proud of it.
And I also knew I wanted to be of some amount of,
in a service industry.
I felt like I'd been on the receiving end of amazing care
in the hospital and among my friends and family.
And I had really experienced what it's like to be cared for.
And it was beautiful, it was stunning.
And so I knew I wanted to be in service
and I knew I wanted to use my disability.
And that just on paper pointed me towards medicine,
but I had never studied medicine
and never been interested in.
So I went back and took the pre-meds
and sort of just one foot in front of the other,
went down the road of medicine and kept going.
And where did you go to med school?
University of California, San Francisco, UCSF.
Okay, so that's what took you over to the West Coast?
Yeah, yeah.
Right, so.
Well, I actually moved, yeah, I knew I wanted to go West
and I did the pre-meds here in Oakland.
And that's what really the pre-med
and I was lucky to get into UCSF and stay in the Bay Area.
But yes, that was the Odyssey.
Okay, so when you went through med school
and you came out the other end, how did you,
well, firstly, what was the journey
into the palliative care physician that you are now?
Well, often med school,
again, because I wasn't approaching this
from an interest in medical science per se.
I was approaching this,
I was interested in learning some new skills
and having a bag of tricks to put to use in service.
And so what fueled my interest was not so much
the details of the schooling, physiology, et cetera.
I found it interesting,
but that's not what I was there for.
So all through med school, I was pretty casual about it
because I figured the best place for me to work
would be in rehab medicine,
working with other disabled folks.
And that just seemed like the most obvious choice.
So that's what I just assumed I'd do.
But deep in med school,
I finally did a rotation in rehab medicine
and for a number of reasons,
fell out of love with that idea
and actually was going to,
I was gonna finish medical school.
I was in my senior year, but I was gonna stop.
I mean, I knew from my own coming close to death,
I knew that I was not gonna make my life
an unnecessary sacrifice.
And then I think a lot of folks
who go into medical training,
it takes so much time, so much money.
And then once you're far enough down the road,
the idea of doing something else just seems ridiculous.
So a fair amount of my colleagues,
I think still practice medicine,
not because they love it,
but just because that's all they know how to do
and they had spent too much time training.
So they kind of felt like they had to do it.
I was not gonna do that.
So I was gonna drop out of medicine,
but then did an internship,
the first year residency, my first postdoc year,
just because my Dean said,
you should go do an internship, then stop.
That's just a better stopping point.
You can get your license to practice.
If you wanna jump back in, you can, et cetera.
So I said, okay.
So I went back to my parents,
my family at that point was in Milwaukee.
So I went to Milwaukee to do my internship,
just thinking that I would do that one year and be done.
And then I was probably gonna go into the tea business,
which is another story,
but during that internship,
I got turned on to palliative care.
I did a rotation in it.
And as happens in this field,
I was sort of smitten the very first day,
and then recommitted myself to medicine,
to do palliative medicine specifically.
Okay, so I know that I was really introduced
to that term specifically from hearing you talk before.
So can you give us a definition of palliative care
and then contrast it with hospice?
Yeah, yeah, thank you, James.
It's a really important point to get across.
So yeah, so palliative medicine is,
is palliative care more broadly,
is in a disciplinary pursuit of quality of life.
It's a medical subspecialty now
that focuses on chronic and advanced illness,
so serious illness.
And the idea really, the fulcrum for palliative care
is not so much to combat disease,
but to combat suffering.
And so that's what, so palliative care,
that's palliative care period.
It's doctors, nurses, social workers, chaplains,
and others working together to help you suffer less
and actually feel as good as possible.
So it grew out of hospice,
sort of hospice mentality hit this country
in the mid 70s and grew in the 80s and 90s.
And as you know, hospice really is,
especially since Medicare got in the business in the 80s,
hospice really is meant for the end of life.
It's in the, you qualify for it
when you have six months or less to live.
So it is really meant to be care at the end of life, hospice.
But a lot of people who worked in hospice,
you kind of, you start realizing that, gosh,
people have been through the mill of treatment
and then they enter hospice
and they get this sort of loving embrace
and people rallying around them and supporting them
and not trying to force them to do anything
and they're treating their pain and they're being kind,
and it can be beautiful.
But it's a common moment is for everyone involved
and say, well, why do we wait so long
to provide this kind of care?
Why do you have to be dying to get this kind of care?
And it's that kind of impulse
that gave birth to this wider sphere of palliative care
that I just described.
So the hospice is the mothership,
palliative care grew out of a hospice mentality
and hospice is part of palliative care,
but palliative care is going to be much larger
as I was saying earlier.
You don't have to be dying anytime soon
to get palliative care.
And that's a hugely important fact
for your listeners to absorb
because the common misconception is that palliative care
is hospice, is end of life care,
and therefore you only qualify for it when you're dying.
And so no one wants palliative care
because that usually means they're dying
and that people are suffering unnecessarily
when there's this whole specialty
that can help them feel better anywhere along the way.
So it's a really, really important point
that society has to understand that palliative care,
yes, we do end of life care, but that's not all we do.
Right, and I know for someone who's been in medicine
for almost 15 years now, I wasn't aware of that.
So I guess that needs to get out there a lot more,
especially with the fact, and correct me if I'm wrong,
that once you enter hospice specifically,
you're giving up a lot of your medical treatments as well.
Is that right?
That's right.
So the way, and that may change someday.
There's some demonstration projects out there,
but since 1982 when Medicare defined the hospice benefit
in this country, the way they drew a line around it
was you have to have a doctor tell you
you got six months or less to live,
and you have to give up curative intention.
You have to give up essentially treating the disease.
And that's been a real problem.
I mean, it used to be less of a problem in a way
because once you're in six months or less to live,
oftentimes the treatments are obviously not working.
The treatments are in some ways hurting.
So at one point, giving up treatment
was an emotional and psychological barrier,
but practically speaking, wasn't such a big deal
because you were giving up something that wasn't helping you.
Now, we've gotten better at treating illness
and more savvy at, if not curing it, at least delaying it.
So we're in a pickle now that part of the problem
that faces hospices, as you're pointing out,
we put this really lame fork in the road.
So yeah, Mr. Jones, you can come be with us in hospice,
but you have to let go of this idea of treating your disease.
And so it's this really difficult decision
that we make people make.
And it's one of the forces that keeps people
from electing hospice until very, very late in the game.
I mean, commonly people are in hospice for a week or less,
which is a real problem for a number of reasons.
So like I say, there are some efforts
to revisit the hospice benefit and do away with that,
that false distinction there, that false fork.
But meanwhile, it's exactly why Pound of Care
is particularly so important as a field outside of hospice
because you don't, Pound of Care works great.
Like my clinic at UCSF and the cancer center where I work,
I see patients who are full battle mode with their illness
and pushing back on it and maybe even be cured,
but they're still suffering and that's why they see me.
But they're getting aggressive intensive treatments
alongside palliative treatments at the same time.
And that's when it works best.
Okay, now I wanna kind of sidestep for a moment
because I know that we're seeing a much higher incidence
of cancer, especially as we talk before we start recording
in the first responder profession.
I mean, it's been ridiculous.
I've been in so many firefighter funerals last few years
and just went to Memorial yesterday and my brother JP,
who had an autoimmune disease and earlier the year,
we had a gentleman named Shakey who that was cancer.
But again, I can't help but feel there's,
and I'm right away putting it,
I feel like there's more benefit than we are taught
from some of the holistic practices
versus the chemo and the radiation.
Have you being in the West Coast specifically
with the hospice care,
do you see some of these areas outside
of the pharmaceutical applications that we're used to
making a difference in some of these terminally ill patients?
Yes, is the short answer.
So integrative medicine, which is sort of a catchment
for everything that's not traditional medicine
in this country.
So acupuncture, Reiki, energy work, massage therapy,
lymphedema massage, yoga, herbal medicine,
and naturopathy, et cetera.
These all kind of live more or less under this banner
of integrative medicine.
And a place like where I am at UCSF,
there is the Osher Center for Integrative Medicine,
a very well-funded and beautiful program right next to,
it's directly across the street from our cancer center.
So this is not the norm.
The Bay Area in a lot of ways is not the norm,
and UCSF is not the norm.
So we have a pretty good relationship
with the idea of treatments outside of our usual scope.
And over the years, I've noticed there's less bigotry there.
I mean, I think traditionally a lot of folks
who are in the Western American medical model
would have otherwise poo-pooed nutrition,
acupuncture, et cetera.
But this is where the patient population has taught us a lot.
They are, they're going around us
and seeking these other treatments,
and some's working for them
because they spend a lot of money on it
and they keep doing it.
And so finally I think traditional MDs
are starting to open their eyes
that there may be other ways to think about the human body
and other ways to approach helping it.
Now, that said, we've still got long ways to go.
The big pharma and interventional medicine
still rules the day,
and in a lot of ways it deserves to,
but in a lot of ways it doesn't.
So we're not at this,
the healthcare system has all sorts of ills,
including how it treats other approaches
that aren't its own.
So it's still a huge issue.
So, okay, so that's one point, James,
but to answer your question,
yes, I mean, I see a lot of my patients
who then also see an integrative doc,
acupuncturists, et cetera.
So a lot of the patients I see are doing this themselves.
I'm not savvy enough necessarily
to prescribe very other modalities.
I'm savvy enough to be aware of them
and encourage my patients to explore them.
And that happens pretty frequently.
And I'd say the biggest,
so I was gonna cut to nutrition as an example
where people are thinking about food very differently
as we all know,
versus the processed stuff you or I probably grew up on.
And so there's a real revolution
about working with the body rather than upending it,
whether than sort of commandeering
sort of physiology like we do in medicine.
There's all this interest in working with the body
from a more natural or holistic point of view.
And I guess also to your,
so when I feel like that does makes a ton of sense
and it does my patients some good.
Now I can't tell you whether or not
these other interventions are,
I don't have a control group in any one of my patients.
So I don't know if in the end,
does it make a huge difference?
Does any one thing make a big difference
in terms of the longevity?
I don't know.
But what I can say is very commonly
in terms of daily routine, daily life,
in terms of how you're feeling,
nevermind your longevity,
but how you feel in your daily life,
I absolutely believe that a lot of my patients
are benefiting from these other modalities
in ways that I can see and appreciate.
They are, their pain is less, their energy is more,
their nausea is less.
That means they can get outside
and be part of the world more
and they can engage the world more,
which means their attitude is better,
which means their depression is less,
which means they're more functional,
which means they can hang in there
with the more intensive treatments.
So there is the beginning of a virtuous circle there.
I think we got a long ways to go,
but to your point, absolutely.
There's all sorts of good stuff
outside of traditional medicine in this country.
Yeah, I mean, I think that's something
that I personally believe in.
And obviously it's a belief,
everything in life is a belief,
but watching documentaries like Forks Over Knives
and seeing some of the reversals
from the medical scientific point of view,
and then also being a paramedic for,
or riding a rescue for 13 years,
and seeing patients with literally almost like trash bags,
size bags full of pills,
who nothing has changed versus people
that have changed the way they eat
and their exercise routine who reverse disease.
So I don't think you need to take some of these things
to the lab to see that overall removing the anomalies,
generally that seems to have a much better effect.
And like you said, another thing that I've observed
from the people that I've seen that have been very sick
that have gone through these treatments is,
as you just mentioned, the quality of life leading up
to when they pass seems to be a lot worse
than if they had tried other interventions.
And it's to say that it was a foregone conclusion,
the same path.
The quality of life is a lot better leading up to it.
Yeah, I totally agree with that.
And it may be very fascinating.
There may be, I bet it's multiple things.
I'm sure there are direct physiologic effects
from these other kinds of interventions.
And Jesus, it makes so much sense
that food's important and all this, I mean, duh.
I mean, it's just, when I look at my medical training
and how little we got on nutrition,
it's telling and stunning.
And at some point we're gonna just laugh at it
because it feels like a kind of negligence.
But I wonder how much of the salutary benefits
are also when folks engage their own health
and take their role seriously
in terms of what they're putting in their bodies,
their attitudes, et cetera, of course they do better.
It may be much because just because they're engaging
versus they're taking a pound of pills
that their doctor told them to.
And so their engagement is really as a passive vessel
for the doctor's orders.
Whereas the ideal patient that I think you and I
are aware of and see and feel kinship with
is folks who are actually engaging with their own health
and not just handing themselves over to a doctor.
Right, now I couldn't agree more.
Now, just so that I'm not seeming like I'm demonizing
the whole medical industry on that side,
we both agree because you're sitting there talking to me
that trauma medicine seems to be extremely effective.
And I think everyone would agree that a plate of salad
isn't gonna fix a broken femur.
So there's no question about that.
Are there areas of pharmaceuticals in that area of medicine
that you find very beneficial
in the palliative and hospice arena?
Well, so yeah, first point is to totally yes.
I can be very critical of the healthcare system
and there's a lot to criticize,
but I'm also a huge fan of it.
And I think we just need to use
all these different modalities
just thoughtfully and there's a time and a place
for all of it.
And to your point, a heap of broccoli
was not gonna help me that night
on top of the train, for example.
So there's all sorts of brilliant things that medicine does
and public health and there's a lot to love in there too.
So yes, I'm super with you,
but let's also be naked to the critique
all in the effort to kind of make it better
because we love it.
So that's the first point.
I mean, for me as a palliative medicine specialist,
the prescriptions that I write
are the most important medicines for me
from a pharmaceutical point of view
are the symptom management meds
because that's where the expertise
of palliative medicine lies
is really in managing symptoms as optimally as possible.
So now that means a fair amount of pharmaceutical work.
I mean, I write a lot of prescriptions for opiates.
We all know that opiates,
that's another double-edged sword.
And especially these days,
I mean, it's really sad.
When I was a patient in the early 1990s,
medicine really was still in the kind of an old fashioned
view of treating your pain.
It was an afterthought at best
and lots of unreasonable concerns around addiction
and abuse and absolutely like the idea,
I mean, I've heard it so many times,
people have been told who are on their deathbed
that we don't wanna give you too much morphine
because we don't want you to get you addicted
and they're literally on their deathbed.
I mean, there's insanity around it too.
So what happened in the 90s, we swung,
we undertreated people's pain,
we didn't give it serious thought.
And like when I had phantom limb pain,
that was still considered a psychological phenomenon.
And that sucked, having your own pain second guess.
And then somewhere along the way in the 90s,
we got hip to the idea that,
oh gosh, maybe we should take pain seriously
and maybe that's what our patients want us to do
and maybe pain sucks and we can,
so yeah, great, finally.
And so there was this relatively large swing
towards opiates and being more liberal with them
and trying to make sure to be more aggressive
with pain control.
And of course, as things go from a systems point of view,
we swung too far and we made it for some people
too easy to get these meds and we created new problems.
And now here we are with the pendulum swinging back.
So there's a lot to say about that.
I don't know why I just went off on that,
but to answer your question,
a lot of the drugs, the pharmaceuticals that I lean on
are symptom meds, including stimulants, including opiates,
including benzodiazepines, all sorts of meds
that are tricky and serious.
But very helpful.
Right, I've actually got two guests lined up.
Dr. Gregory Smith, who's big in the,
one of the advocates for anti-opiate over prescription
and then Sam Quinones who wrote a book, Dreamland,
they're gonna be coming hopefully the next couple of months
because that's something that we see
in an absolute epidemic in the first responder area,
not only with the patients,
but within our own people as well
when they get depression or if they get hurt
and they get addicted.
So, and it's sad, like you said,
because they have a place the same way as the psych meds
have a place for the people with extreme problems,
the bipolar and schizophrenia.
And then they're handing them out like candy
to everyone that's feeling,
oh, it's a little bit gloomy today, I need depression meds.
Absolutely.
Yeah, I wish for all our sakes we could get beyond
the, another quick critique here,
the sort of oversimplified concrete thinking,
black or white, yes or no, off or on, good or bad.
We just need to start seeing things on a spectrum
that matters how we use them.
We need to be thoughtful, but there's a time and a place
for a lot of these medicines.
And I just wish we could get a little bit more sophisticated
in our reasoning.
Absolutely.
Well, going from the medical arena,
so I have witnessed hospice in different, I guess, age,
categories now, my friend JP passed away,
he was in hospice at home.
I actually nursed my 99 year old granddad a few years ago,
and he was in hospice at home.
So these guys were afforded an environment
that was somewhat familiar and more gentle.
But as you mentioned in some of your interviews,
a lot of times the hospice care is in a very clinical,
sterile hospital environment.
So what was it when you enter palliative care,
when did you have that realization that maybe
that environment wasn't the most,
the healthiest for the patient in their last days?
The hospital environment, specifically?
Yes.
Yeah, acute care.
Yeah, to me, it seems like part of approaching
the end of our lives, especially after long battles
with illness and dealing with not only the disease,
but all the side effects of treatments, et cetera,
that one of the upshots really is you get to,
at some point, that stuff isn't helping you.
You get to let go of what can feel like
such an unnatural and difficult environment,
the hospital, the acute care mentality,
et cetera, and that death is,
everyone we've ever known, anyone who's ever lived dies,
all of us, it is one of these profound uniting forces
that affects any living creature.
And it's hard to think of, it's hard to conceive
of a more profound moment, perhaps rivaled only
by birth, and yet, so in an acute care environment,
all that, the profoundness of it, the beauty of it,
the stillness of it, the peace that most people seek,
all that stuff is so inaccessible in an acute care setting
because an acute care setting is designed,
explicitly, the death is the enemy.
And so you're in a setting, in your final stage,
you're in a setting, in your final moments,
that is designed exactly for the opposite of you.
And it does not begin to do justice
to the profound nature of what's going on.
So it was pretty easy to spot that.
And most people don't wanna be in a hospital,
especially if you're in your final moments,
why would you want, of all the places to be,
why would you wanna be there?
So part of that is a comment on the design and architecture
and the layout of a hospital
and the unintuitive nature of it.
Part of it is a comment on,
nature has no pride in a hospital.
There's very few windows and natural light,
and any ability to touch into the universe
beyond the hospital is tricky.
And things like making it hard for your family
to get in and out, visiting hours, all that stuff.
So it doesn't need to be that way.
And most people don't want it that way.
Most people don't wanna die in a hospital,
and yet most of us still do.
So you, well, first educate me,
were you one of the founding members of Zen Hospice?
No, no, no, that has been,
they got started in 1987 in the wake of the HIV crisis
in San Francisco.
So no, I was there from 2011 to 2016.
So I was just there five years.
But so no, can't take credit for starting that.
Okay, but so when, let me rephrase it.
How were you introduced to that amazing project?
And then can you contrast what you had there
with the hospital setting?
Yeah, so in part because,
in part because, like, you know,
I'd say again, I majored in art history
and I was interested in architecture and physical plant
and space and art and light and aesthetics.
I was already preloaded for that stuff.
And I knew early on in my medical training,
I first heard of Zen Hospice project when I was a med student
and just, I was like, wow, okay,
there's this beautiful little Victorian
with a bunch of human beings who are there
just because they really care.
And they're basically helping people die
in this very sweet and kind and gentle way.
And it immediately struck me as, wow, gosh,
what an amazing thing.
That this doesn't have to be a medical event,
that this is more, this is a spiritual,
social, a personal event.
And here was a teeny little six bedroom house
in San Francisco espousing this and working from that plane.
So I was very quickly moved by it
and didn't think much more of it because I didn't,
again, I thought I was gonna do a rehab medicine.
But years later, they had to close their doors,
they had to deal with some licensing issues.
And then when they were set to reopen,
I became very interested in the job
because one, they had this humanistic,
sort of spiritual approach to care.
You're working sort of from the human plane
rather than the skilled professional plane.
And the second point I was in love with
was the infrastructure, that it was a beautiful building,
a place where you would want to be,
unlike the acute care hospital.
And for those two reasons, I took that job
as the executive director and worked there for five years.
Okay, so could you tell me some of the things
that they did at the house to create that feeling of home?
And I know you mentioned smells
and some other things that you did
for the residents before they passed.
Yeah, so I think a lot of it is not exotic.
First of all, you start with the building
that is an old Victorian home.
So it is a home, and it feels like it's designed
to be a home, and it feels that way.
So the second you walk in the door,
just the structure itself has already said a lot to you
and makes you feel a certain way.
But beyond that, you have to give the training
a lot of credit.
So it was like a lot of older hospices in this country,
it was largely volunteer-led.
And then you layer on nursing and medicine
and other skilled stuff on top of that.
But the heart of that place was the volunteer training.
So you're met by human beings who aren't in some costume
or in some way making you feel like they're an expert
and you're not.
You walk into a hospital, you're pretty quickly aware
of your vulnerability as a patient.
You walk into a place like Zen Hospice Project
and you're pretty quickly aware
that you're among fellow human beings.
And that is not just the architecture doing that,
that's a lot of the training
that goes into the volunteer work.
So the way you're met by people is different.
And then we also, and I can't take credit for this,
they were doing this already,
but we really put a lot of effort into the kitchen
because another thing that just makes you feel proud
or glad to be alive in the moment are the life of the senses.
So if you're met by the smell of classically cookies baking
in the Zen Hospice kitchen,
and you open the door and you're met with a waft
of cookie dough instead of Clorox cleaning product
or something else that you'd smell in a hospital,
it's just, again, an immediately different experience.
It just sets you up to, you want to be there.
And as we both know, there's something primal
about the sense of smell.
It can bring you back to your childhood
or it can transport you just about anywhere.
So a lot of the effort was put into the environment
in that way and setting an aesthetic tone.
Again, the design prompt is like create an environment
where you'd really want to be.
And that's basically what it is.
Yeah, and I love that.
I mean, when I was nursing my granddad, I was lucky.
I flew over back to England
and had about three days with him before he actually passed.
And it struck me when you talked about some patients going,
you know, or at peace and some fighting,
because, oh my God, he was like Muhammad Ali
right to the last breath.
He did not want to go.
And it was heart wrenching in one way,
but it showed that his lust for life,
but he was able to stay in his home with his wife,
be in his same bedroom that he'd always been in,
you know, be around family.
And so even though the disease, which was cancer,
was ravaging his body and he was jaundiced to the point
he looked like a Simpsons character when he passed,
he, you know, he was able to be there.
And I have to say kudos to the British healthcare system.
I know they're kind of painted in a slightly different light
when you're in America, but the National Health,
they had such amazing care.
They had home hospice, they had doctor's visits,
they set his bed up.
They visited my grandmother for about two weeks
after he passed.
It was incredible.
So I don't know how it compares
with the British healthcare system,
but I know the sheer acts of him being able to stay
in his home, you know, was probably monumental
versus him being in some sterile hospital environment
for the last few days.
Oh, amen to that.
And I mean, there's a couple of things to say.
One is to just kudos to the NHS and to the UK.
I mean, this is the modern hospice movement
came out of London, Sicily Saunders
built St. Christopher's in 1967.
So we owe a great deal of gratitude to Great Britain
for developing and furthering this.
And a second point is, as you mentioned
about your grandfather,
this is really important to get across.
I think where I and others in my field sort of talk
about wanting us as a culture to acknowledge
and even accept the fact, the plain fact,
the reality that we have to die at some point.
We're only demanding that we just fold that
into our worldview because it's a reality
that we ignore at our own peril.
But that doesn't mean, that shouldn't mean
that we're mandating or advocating a certain way to die.
So many people want to be at peace at the end
and just want to have their comfort tended to
and want to say goodbyes and want to kind of tie it up
with the bow and that can be beautiful.
But to be clear, it's not like that's the right way to die
and some other ways the wrong way to die.
The last thing we want to do is make anyone feel
like they're failing at dying, like they're dying wrong.
So it's really important to call out
like you did with your grandfather.
He could be on hospice getting all this great kind of care,
but that doesn't mean he's got to pretend to be happy
to be dying or at peace with the idea.
I mean, my job is to help people kind of,
I'm like an usher, I kind of link people to the care
that's going to help achieve their goals.
So if my patient, if I have a long conversation
with the patient, their eyes are wide open,
they know they're dying, but they want to keep staying
really aggressive even if that next chemo dose
isn't likely to help them, but they want to go down swinging
as it were, my job is to help them go down swinging.
My job really is just to make sure their eyes are wide open
and they're not just falling out in some default pathway,
but that they're getting the kind of care
that registers as best for them.
So amen to your grandfather for kicking and screaming
on the way out.
I mean, that's beautiful.
So that's another point.
And then, well, I had a third point,
can't remember where I was going.
I thought we were talking about NHS kicking and screaming
and then versus the hospital environment, but.
Oh, well, I guess that's also to call it,
yeah, I want to also call out that the hospice
in this country has, year over year,
more and more people who die do so on hospice.
So we're around like 42, 44% of people who die every year
are on hospice.
So that's pretty great.
And that's, a lot of development,
a lot of effort has gone into that
and we're heading in the right direction.
So, and fewer than 50% of people are dying in hospitals.
Still bulk of people are dying in institutional settings
when you throw in nursing homes, et cetera.
But we're heading in the right direction
in the ways that the UK has paved for us.
So home hospice is remarkably accessible now.
You just have to dare to request it
and you have to have a doctor who dares to point it out
to you when the time is right.
But dying at home is not the difficult exotic thing
it was 15 years ago.
Well, that's great to hear.
Now that transitions pretty well though
to one topic that we touched on before we start recording
as well that I wanted to talk about.
So the medics and EMTs and anyone that's in the ER field
is gonna be able to relate to this.
In our field, usually, sadly, when we have death,
we're going to a car accident, going to a cardiac arrest,
whatever it is, we're wheeling them into a hospital
and then we see very much of that sterility
and this is by no mean a blame.
It is what it is in the emergency setting,
but we'll bring in a patient, they'll go to bed one,
for example, and then you clear to your report
and then come back and then before you know it,
bed one's made up again and it's available
for your next patient.
So we don't get so much of the palliative side,
but what we are not taught to deal with,
which is very interesting, is death in itself,
but really the family that's left behind.
I remember very specifically a 29-year-old man
that I had drop dead in one of our businesses
on the Disney side and totally unexpected.
The guy was just dropping off a dog for a kennel
and then I literally was finishing my report
in the hospital about eight feet from these people
where the grieving room was, that's where they put us.
And they knew I was the medic that was leading that code
and there was nothing we could do.
So from your perspective, I know you're dealing
in a different speed of the demise of the patient,
what would you say if you were in with a bunch
of paramedic students on what to say to parents,
excuse me, to family after they've lost someone like that?
Yeah, so you just said something that's really important
a couple of things.
And one is, it's just to be clear on why we do what we do.
So all of us should be clear on that and think about that,
but we should also think about that on institutional lines
too, so for example, healthcare.
Is healthcare really just about combating disease
or is it about supporting human beings?
Cause if it's just about combating disease,
then there really is a moment where, sorry,
there's nothing more we can do.
We tried our best, good luck out there.
And that beyond the cure that there's nothing much
for us to offer.
And I think that's what the train that you and I
have absorbed is that kind of mentality.
I would say we're right for a kind of a mission redo.
So I think all of us have to, like, are we,
does our job end when someone's not curable?
I don't think so.
So part of the answer to your question is for us
to kind of revisit our ethos and our training
to cut a wider, to include a fuller breadth
of the human experience on our way to death.
So that's one point.
Second point, and answer your question more narrowly,
like, you know, one of the things that I learned
from the volunteer training at Zen Hostess Project,
and just also from being a patient,
is the power when someone, the power of someone
just not running away is profound.
So when we're at our ugliest, smelliest, worst,
most painful, most miserable, that's oftentimes
where society just kind of disappears.
Cause it's, you know, you talk yourself out of it,
you think that the person wouldn't want you there,
whatever we do.
And so we end up isolating people
who are in these very difficult situations.
And we do it in the hospitals too.
We abandon people either literally or sort of psychologically.
And so part of the answer to your question is
we all have to get better at exercising the muscle
of just sitting with someone who's suffering
in ways that we can't fix.
So that, if you can kind of embody that
and have that kind of vibe about yourself
and be still and comfortable when someone's world
is falling apart and not run away and be there with them,
you don't necessarily even have to say anything.
It's almost like a vibe.
So that's a second point I would sort of get us all
trying to think about.
And then finally, you know, there are,
there aren't any particular Pat things to say
because there's so many cultural and personal overlays.
So what might be nice to hear according to one patient,
maybe downright offensive to another.
So you can think about various lines to have in your pocket,
but what I really think works best
is just being authentic and real.
So that may mean sitting there saying to the family,
I don't know what to say right now,
but I'm here with you.
I'm here for you.
I wish it could have been otherwise.
Or, you know, even just kind of fumbling your way,
but being obviously emotionally honest and moved.
That's where I think most of the healing comes
for the family, much more than just saying the perfect thing.
So I think we all have to kind of get comfortable
with discomfort in a way.
That I think is where so much of the healing happens.
And very often it can be in the form of a hug,
physical touch, obviously have to be thoughtful and careful,
but physical touch can be so profound.
A hug from a stranger in an ER lobby
can be really, really moving.
And I think related, and this is my last comment on this,
would be, you know, dare to show your emotions.
In medical school, we're trained to, you know,
be dispassionate and a little bit removed, you know,
so as to not eclipse the patient's emotional experience.
But we take it too far.
We end up just being numb or cold.
Some of the most profound moments I've had with patients
are when I am just overcome myself.
I don't know what to say, I'm fumbling for words,
but I don't run away and I just sit,
I stay there with the person.
And even like my boss, Steve McPhee, a mentor of mine,
he was famous for, he would cry with his patients.
He didn't try, he was a crier, they came.
And traditional training would say that's not a good idea,
that that's overreach.
But for Steve, and I watched, it was magical,
that was profound for families, to see that their life,
that their loved one's life moved their doctor,
was itself healing.
So that may feel like a mistake traditionally,
like, oh my gosh, he doesn't know what to say
and he's crying, oh my God.
In a way, that's ideal when it's authentic.
And so I guess the bottom line is just find a way
to stay real and not run away.
And it doesn't need to be anything more magic than that.
Yeah, I know when we talked before as well
about bridging the palliative care
with the pre-hospital emergencies,
something that's kind of ringing
while you were talking about that was,
there's this phrase called a show code that we have
in the pre-hospital arena where we know
that the patient is gone.
There's no way in hell you're gonna save him.
They fall within certain parameters.
But people kind of get uncomfortable with calling it there.
So they start working, especially if it's a child.
But this is way past any form of viability whatsoever.
And I think that's an area that we fail in
because it's a bitter pill to swallow
and it's something that's very uncomfortable.
But to let that child be at rest
and just cover them in a sheet or just lay them in the bed,
whatever it is that the environment that they're in,
I think is a lot better for the family
than then start drilling their shin bones
and sticking tubes in their ass.
And then knowing damn well, let's have the same conclusion.
Now they've got to go see their child lying,
deceased in a hospital bed.
So I think when you said about us bridging the gap,
I think there are many areas where we as first responders
can start thinking about maybe not even palliative care,
but just the human side again,
and get away from the temptation,
which is that this is just patient 1075,
the deceased and we lose that human side.
And lose that compassion towards the patient.
Right. Well, there's so much to say.
I think there's this hopefully a beginning conversation,
James, over time,
because I think there's so much for our fields
to learn from each other.
And I would say, by the way, I mean, you know,
there's now a subspecialty of hospice and palliative medicine,
you know, and there's expertise around it.
But so much of the rudiments and the fundamentals of it
are basically, they are just good medicine.
So I would encourage your folks in your field
to feel part of the palliative care family
if you believe that your job
includes tending to someone suffering.
If you see your job is narrowly defined
around disease management,
and then, you know,
then you really aren't in a palliative care mode.
But if you as a person, as a professional,
feel that you have an extended duty and interest
to tending to suffering, then I would say,
welcome to the family.
You're part of the palliative care world.
And let your work flow from there.
And to your point, I think one of the very concrete ways
that our fields can inform each other
is exactly what you just described,
this sort of theatrical code that happens
that is itself, for the most part,
a kind of trauma for the family.
I've heard from many people who,
their loved one died at home just as planned,
but they weren't on hospice, so they called 911,
and paramedics came, and the death was beautiful,
and they knew it was coming.
And then all of a sudden, in rushes this gang
who starts stomping on the chest, et cetera,
and doing all this stuff, which feels brutal,
absolutely brutal, and ends up being traumatic
for that family to watch that.
So, and it's completely unnecessary, as you point out.
So that's a good case in point where I think
we could all benefit from other protocols,
around how to treat a deceased body
that is clearly no longer viable.
And I'm sure that for most of the public,
the soft code or the theatrical code,
I can't remember the phrase you used,
is-
A show code.
A show code, is actually hurtful.
And in fact, the better thing for you to do in that setting
is pull up a chair with a family member or spouse,
hand them a tip, and then you can go
and hand them a tissue, offer to be there with them,
offer a hug, maybe even put your arm on that child's shoulder
and say your own goodbye to that.
And just pay the body respect rather than intervening.
Because those final moments for the family,
you guys probably know this,
but people will live with whatever your work was,
whatever you guys do, it's seared in the memories of families.
And so you set folks up for the rest of their lives
with imagery in those final moments.
And that can either be brutal imagery,
which will complicate their grieving period,
or it can be much more kind and tender
and help someone in their grief.
Yeah, because I know our protocols where I work now,
many of them lean towards,
and even if it is an actual code, to try on it,
but if it's not working, if you get a 20-minute period to work a code,
if it's certain cardiac rhythm, you can call it then.
So even then, the family are left with their loved one,
hopefully in their home, where they can then start to process it.
But I know a lot of places, and certainly where I work,
there's an old-school mentality of, you know,
get them out of here, really.
I mean, there's no other way of putting it.
Which again, is the initial, I think, goal behind that
was better customer service overall.
But I think, as we just talked about,
it's the actual opposite, that it's much worse for the family
if they're whisked away and then they find themselves
in not only in a hospital, but let's talk logistics too,
with a huge medical bill at the end
for working the code that was never going to work in the beginning.
Absolutely.
And absolutely, we've just muddied this very hard reality for somebody.
And one of the kindest things you can do,
even if the family is yelling at you and just in their grief,
someone taking responsibility and saying,
this person is gone, this person is dead,
there's no coming back, that's a hard thing to transmit,
but it is, in the end, a very kind thing to transmit,
especially if you do it with love.
So, yeah, yeah, I feel I'm so with you on this, James.
It's a huge subject and it's where your field could do
even more good than you already do,
if we could loop this into your training somehow.
Yeah, I agree 100%.
So, well, talking of death, and we're going to transition back to,
I mean, obviously, you've seen thousands of people pass away now.
I just want to touch on one thing before we do some wrap-up questions
and let you get on with the day,
because you've been extremely generous with your time,
but I heard you talk about this before and I kind of want to visit it.
Of all the patients that you've had at the end of their life,
have you seen common denominators as far as regrets
and common denominators as far as feelings of fulfillment
from the patients that you've seen before they passed away?
Yeah, I mean, so, you know,
there's a sort of what I think most of us kind of assume.
There are sometimes communicating regrets around, like,
gosh, why did I work so hard or should have spent more time with my family
or should have done this, taken this trip or, you know,
there's sort of the stereotypical regrets that usually come from someone
who's basically never conceived of the limitations of their life
and always, you know, basically absorbed and perpetuated an idea
that death was kind of optional and wasn't kind of really going to happen to them.
And if they did, they'd have a lot of time to reckon with it, et cetera.
Of course, that's just not the way death plays out.
And this is why another reason why I think it's so important for us all to be talking about it
so that we can live our lives a little bit differently
so that regret isn't such a problem.
I mean, I can, we can help with symptoms and pain and the suffering
that a lot of people can, that are worried about that dying portends.
You don't have to suffer in death necessarily.
But it's impossible. I can't do much with regret.
You know, those are something that we compile over a lifetime.
So where things that go really well are for people who have roped this fact into their lives
and lived a life in a certain way that they didn't stoppile regrets.
And if they had any regrets, they either came to terms with them or, you know, rework their lives.
So anyway, but to your question, yeah, it's pretty common for people
to kind of transmit basic regrets like that.
But I must say it actually doesn't happen all that often.
By the time most people are done with all the medical treatments,
and I see people with chronic illness, so they're not dying suddenly.
They've known the end is coming on some level for a while.
And most of folks don't have a lot of unfinished business.
They're just really, it's just deep sorrow.
And, you know, I feel like we've done our job right if someone, if a family
and a patient are just sad at the end of life because there's plenty to be sad about.
But it gets troubling when you have sadness plus regret plus guilt
plus all these other complicating variables.
So sadness, beautiful.
Everyone, there's sweetness and love and sadness.
Where it gets tricky is if you put off thinking about the importance of your time
and your life too long and then are surprised by your death.
But for the most part, most people I ever work with or meet,
they're, you know, when the push comes to shove, they may be sad,
but they're often really ready to go.
The harder part is the family left with, gosh, I wish I had said this or said that.
I wish we had done this or done that.
Why was I so selfish?
Why was I, blah, blah, blah?
We don't grieve very well in society.
And that's another thing I think we should all learn to do a little bit better.
There's a lot of beauty and grief.
And also if we grieve well, then when it's our turn, we do it a little differently.
We die a little differently.
People who have known loss and dealt with it, they die better, I must say.
Right. And then flipping that on its head.
So what advice would you give to people just, you know,
obviously collectively from all the wisdom of all these, you know,
men and women that have passed through your doors as to, you know,
the key points of living a fulfilling happy life before you get to that point?
So, you know, I would say that I think the people who do best
have found a way to see life beyond themselves.
One way or another, they have a diffuse ego.
Because the ego, that is the part that dies.
But you're going to live on in people whose lives you've touched.
You know, there is an immortality.
It's just not in this body.
Like it's the effect you've had on people, et cetera.
And so things like, you know, the fundamentals of kindness,
of seeing, of being concerned with life beyond your own.
These are things that feel good in real time,
set you up to learn good things, but also will help you die.
Because you haven't confused life at the macro with the life of,
like with your own life.
You're not, you've not put yourself at the center of the universe.
And so therefore, you're not as freaked out
when that center of the universe starts to crumble.
So, and again, also think of all the people you've met
who would qualify as wise.
I don't think there are not a lot of arrogant,
self-centered, wise people in the world.
So one is to see the world outside of yourself,
and to feel part of that world, because that world keeps going.
You'll always be part of that world.
You feel nice and small and proportionate and like you belong.
So that's a huge piece that will really, really protect you.
And I think basic kindness, never, you know,
thinking about moments for their own sake,
not looking at life so strategically or transactionally.
That allows you to stop and smell the roses
and appreciate what you have while you have it, which is so key.
But also allows you to slow down and just be kind just for its own sake.
I mean, I think of how many times my day has been salvaged
by just a kindness of a stranger holding the door open a certain way,
or whatever it is.
It's very basic stuff and in real time.
But you do, you kind of organize a life around that.
And I can't guarantee you, but you're much more likely to die better too.
Okay, I almost feel from all the interviews I've had
and all the experiences I've had in my life so far,
that a universal religious doctrine would just have two pages.
One would say kindness and one would say gratitude.
Yeah.
That's it.
Because that seems to be, you know, the common denominator from everyone you talk to is,
if you have those two things, your life's going to be probably pretty kick-ass.
Yeah, I think that's right.
And pieces of that is also like having an attitude like,
you know, the folks who are stuck with why me when they get sick
and are dying and are wracked with questions of why me,
but that's, it's sad, but it's also telling that they didn't reconcile the limitations of a life
before they were losing their life.
They, you know, sort of a why not me mentality,
like knowing that this body is going to die someday,
it'll freeze you up to work with it and play with it and use it while you have it.
And that cuts back to gratitude at least too.
But I'm with you.
I would sign those two pages wholeheartedly as a total way of life.
Yeah, I couldn't agree more.
Well, that segues very well to one of the last few questions.
So you, the reason why we didn't do this interview earlier is you were on high as kind of,
as far as writing a book.
So are you able to talk about that book yet?
Yeah, yeah.
So we're in the editing phase.
It's my, I have a co-author by the name of Shoshana Berger.
She's a journalist and instructional design person.
And so we have teamed up to write this book that is tentatively called How to Die,
a Field Guide.
And it's meant to be, this is very practical to the point in plain language,
preparing yourself for the inevitable.
So there's, you know, much of what we've talked about will be in the book in terms of explaining hospice
and palliative medicine, how to talk with your doctors,
how to protect yourself against fear at the end of life.
And Shoshana's parts will be much more like around advanced care,
advanced care planning, how to write an obituary, planning a memorial, etc.
So it is meant to be for a very general audience and cover the waterfront of issues
that arise around the end of life.
Simon Schuster's publishing it.
We're not quite done with it.
And it'll probably be on shelves about a year from now.
Okay, well, when you get ready, I will put it on all my areas because not only would that be a great resource
for anyone who deals with death in their profession, obviously, as human beings,
I'm pretty sure we're all going to deal with it at some point too.
So, yep.
Now, what about outside of your own book?
Is there a book that you recommend to people, one of your favorite books?
Huh.
You know, it's funny.
I am, whenever I have time, I'm not a huge reader.
But a book that was given to me not too long ago and that is just has been very touching for me in a lot of ways is a book just,
I think the book is just called Wabi Sabi.
It's a short pamphlet book around the sort of Japanese aesthetic around,
around delighting in imperfections and loving things that are broken because that's a natural state.
And I believe the book is just simply called Wabi Sabi.
And it's like practically a religion in a few pages as far as I'm concerned.
Fantastic.
It reminds me of a picture I saw floating around the internet and it was a pot that had been broken and been repaired with gold,
like gold glue.
And there was some quote saying that the Japanese repair in gold so that they relish in the fact that it was imperfect.
Yeah.
Well, there you go.
That is that's Wabi Sabi ism right there.
And it's practically a way of life.
Unless you find a way to define perfect and stay perfect your whole life.
It's much more efficient for us to somehow get into our imperfections.
I much more realistic way to go and much more beautiful way to go.
Yes.
Yeah, absolutely.
All right.
What about a movie and or documentary?
Oh gosh, I was recently I was watching the Vietnam War.
It's epic.
The Ken Burns and Lin Novick piece on PBS right now about Vietnam and stunning film in itself.
And it reminded me of a documentary that I saw a few years back about Robert McNamara.
What the heck was it called?
It was a really gosh, it was a stunning movie to hear a man who whose whose decisions were so flawed in a way and so
consequential to so many people to hear him trying to come to terms with what he had participated in and had meant well
through was really stunning.
I can't remember the day it's from the same director did the thin blue line.
Gosh James, I'm sorry.
I'm spacing on that name of that movie, but maybe your listeners might know what I'm talking about.
If you probably Google Robert McNamara documentary, it'll come up.
That was for some reason just jumps out at me right now.
In terms of films like, you know, I recently saw loving Vincent and was very moved by that.
I love I love my classically my favorite movies are things like old like kind of like airplane naked gun.
Kentucky Fried movie the groove tube Amazon women on the moon.
These are all these this is sort of kind of sense of absurd sense of humor that I have found very instructive and helpful in my life.
Being in touch with absurdity is a daily is part of my kind of daily religion and then a kind of corollary to that like movies
like waiting for Gufman, mighty wind, spinal tap.
This whole group of people Christopher guest and company who've done just outrageously hilarious work that's part improv part planned again.
It's absurd. It's farcical.
It's holds a mirror up and I just love it.
I remember you saying telling Tim waiting for Goffman.
He hadn't heard of it, but it was the same people as spinal tap.
I'm sure it's hilarious.
It is I guarantee you.
I just love where you're never sure if you're supposed to be laughing or crying.
I like when I'm my emotions are being yanked in a couple different directions at the same time.
Absolutely. Now was the documentary talking about the fog of war?
Oh, there you go. There you go.
All right. I just googled it quickly while we were talking.
So fantastic.
All right.
One last questions.
Is there a guest that you would recommend come on this show to talk to the police fire EMS of the world?
Man. Well, I don't not an individual what leaves to mind is as we were talking earlier to sort of top of mind is I wonder if there's a patient,
a family member who could be interviewed and relate in more detail what feels good and what feels bad about how paramedics had responded to the death of their loved one.
Like we were talking about in terms of these soft codes and things like that.
It would be stunning to hear from a family member who could impart that sort of the experience.
I'll think about whether there's anyone I know who could serve in that role.
But I think hearing directly from patients and families is really key and instructive and valuable.
So that's one thing that leaves to mind from my field.
The Queen B of our field is a woman named Diane Meyer.
She she's a dynamo and MacArthur fellow.
She started the Center to Advance Palliative Care and it'd be fascinating to hear her thoughts on where our two fields could and should inform each other.
She's in New York at Mount Sinai.
She's brilliant person.
So those are the two top of mind thoughts.
Okay, fantastic.
Thank you.
And then the very last thing before we talk about where we can find you and the book when it comes out is what do you do to decompress when you're not cycling or working?
So I love going to the movies.
I love getting on my bicycle, but I also love doing nothing.
Like sometimes I'll just go sit in my backyard and just literally just sit there and I don't have a meditation practice.
But in terms of kind of rebooting and reorienting myself, I'm a fan of sitting and doing absolutely nothing for a little while.
I find it pretty challenging, but I also find it extremely restorative.
So the last question, where can people find you online?
And then where will the book be available when it gets published?
So I had to hit pause for the book.
I was going to try to start my next sort of organization while I was working on the book and we started going on the Center for Dying and Living as a title.
And there's a website out there, Center for Dying and Living.org.
I believe it is, but it's kind of it's in stasis right now.
So there's not much there.
Stay tuned.
But I'm otherwise reachable electronically through Twitter.
I think it's at BJ Miller MD.
And then my email is through UCSF, you know, BJ.Miller at UCSF.edu.
The book again, the title may change, but it's currently called How to Die, a Field Guide.
That's going to be published by Simon and Schuster and likely on shelves at the end of 2018 or beginning of 2019.
Hopefully, there'll be a big marketing push to get that thing out in the world.
So we'll see.
Excellent.
We'll keep everyone up to date with that and may publish the links when it comes out.
So, well, thank you so much.
I just looked at the clock.
I didn't realize how long I've been talking.
So I apologize.
That's a little bit more than the hour that we had scheduled.
Well, it's a pleasure talking to you.
Yeah, well, thank you.
It's been an amazing talk and I'm so glad that we were able to get you on.
But I really appreciate you reaching out to us and, you know, taking the time to talk about that and obviously talking about your own personal journey, which can't be, A, can't be fun, but B, can't be fun when every single interview you have to recount that story.
Well, I don't mind, James.
It's the life.
It's the story I live.
So I'm just appreciate your interest at all.
And I really just to salute what you're doing, James.
There is the first the world of first responders.
It's not a world I pretend to understand totally, but Lord knows you guys do an incredible amount of good in the world and probably relatively unsung for that world.
So thank you for what you do.
And also thank you for the efforts of this podcast to bring well-being and health to this very important segment of the world.
First responders, because it shouldn't be a sacrificial life to do this work.
So I'm just glad you're doing what you're doing.
And I love it if we kind of would all stay in touch and look for ways to inform each other on this work to keep life less miserable and more wonderful for people.
Absolutely.
Well, maybe we can do a part two in the future when around when the books about to come out and we can kind of make sure everyone's looking out for it.
That sounds great.
Brilliant.
All right.
Well, thank you.
Thanks so much, James.
Take care.