TED2015
BJ Miller: What really matters at the end of life
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At the end of our lives, what do we most wish for? For many, it's simply comfort, respect, love. BJ Miller is a hospice and palliative medicine physician who thinks deeply about how to create a dignified, graceful end of life for his patients. Take the time to savor this moving talk, which asks big questions about how we think on death and honor life.
BJ Miller - Palliative care physician
Using empathy and a clear-eyed view of mortality, BJ Miller shines a light on healthcare’s most ignored facet: preparing for death. Full bio
Using empathy and a clear-eyed view of mortality, BJ Miller shines a light on healthcare’s most ignored facet: preparing for death. Full bio
Double-click the English transcript below to play the video.
00:13
Well, we all need a reason to wake up.
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For me, it just took 11,000 volts.
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I know you're too polite to ask,
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so I will tell you.
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One night, sophomore year of college,
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just back from Thanksgiving holiday,
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a few of my friends and I
were horsing around,
were horsing around,
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and we decided to climb atop
a parked commuter train.
a parked commuter train.
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It was just sitting there,
with the wires that run overhead.
with the wires that run overhead.
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Somehow, that seemed
like a great idea at the time.
like a great idea at the time.
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We'd certainly done stupider things.
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I scurried up the ladder on the back,
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and when I stood up,
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the electrical current entered my arm,
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blew down and out my feet,
and that was that.
and that was that.
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Would you believe that watch still works?
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Takes a licking!
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(Laughter)
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My father wears it now in solidarity.
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That night began my formal relationship
with death -- my death --
with death -- my death --
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and it also began
my long run as a patient.
my long run as a patient.
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It's a good word.
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It means one who suffers.
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So I guess we're all patients.
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Now, the American health care system
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has more than its fair share
of dysfunction --
of dysfunction --
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to match its brilliance, to be sure.
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I'm a physician now,
a hospice and palliative medicine doc,
a hospice and palliative medicine doc,
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so I've seen care from both sides.
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And believe me: almost everyone
who goes into healthcare
who goes into healthcare
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really means well -- I mean, truly.
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But we who work in it
are also unwitting agents
are also unwitting agents
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for a system that too often
does not serve.
does not serve.
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Why?
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Well, there's actually a pretty easy
answer to that question,
answer to that question,
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and it explains a lot:
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because healthcare was designed
with diseases, not people, at its center.
with diseases, not people, at its center.
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Which is to say, of course,
it was badly designed.
it was badly designed.
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And nowhere are the effects
of bad design more heartbreaking
of bad design more heartbreaking
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or the opportunity
for good design more compelling
for good design more compelling
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than at the end of life,
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where things are so distilled
and concentrated.
and concentrated.
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There are no do-overs.
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My purpose today is
to reach out across disciplines
to reach out across disciplines
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and invite design thinking
into this big conversation.
into this big conversation.
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That is, to bring intention and creativity
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to the experience of dying.
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We have a monumental
opportunity in front of us,
opportunity in front of us,
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before one of the few universal issues
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as individuals as well as a civil society:
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to rethink and redesign how it is we die.
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So let's begin at the end.
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For most people, the scariest thing
about death isn't being dead,
about death isn't being dead,
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it's dying, suffering.
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It's a key distinction.
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To get underneath this,
it can be very helpful
it can be very helpful
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to tease out suffering
which is necessary as it is,
which is necessary as it is,
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from suffering we can change.
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The former is a natural,
essential part of life, part of the deal,
essential part of life, part of the deal,
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and to this we are called
to make space, adjust, grow.
to make space, adjust, grow.
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It can be really good
to realize forces larger than ourselves.
to realize forces larger than ourselves.
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They bring proportionality,
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like a cosmic right-sizing.
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After my limbs were gone,
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that loss, for example,
became fact, fixed --
became fact, fixed --
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necessarily part of my life,
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and I learned that I could no more
reject this fact than reject myself.
reject this fact than reject myself.
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It took me a while,
but I learned it eventually.
but I learned it eventually.
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Now, another great thing
about necessary suffering
about necessary suffering
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is that it is the very thing
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that unites caregiver and care receiver --
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human beings.
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This, we are finally realizing,
is where healing happens.
is where healing happens.
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Yes, compassion -- literally,
as we learned yesterday --
as we learned yesterday --
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suffering together.
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Now, on the systems side,
on the other hand,
on the other hand,
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so much of the suffering
is unnecessary, invented.
is unnecessary, invented.
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It serves no good purpose.
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But the good news is,
since this brand of suffering is made up,
since this brand of suffering is made up,
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well, we can change it.
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How we die is indeed
something we can affect.
something we can affect.
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Making the system sensitive
to this fundamental distinction
to this fundamental distinction
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between necessary
and unnecessary suffering
and unnecessary suffering
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gives us our first of three
design cues for the day.
design cues for the day.
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After all, our role as caregivers,
as people who care,
as people who care,
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is to relieve suffering --
not add to the pile.
not add to the pile.
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True to the tenets of palliative care,
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I function as something
of a reflective advocate,
of a reflective advocate,
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as much as prescribing physician.
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Quick aside: palliative care -- a very
important field but poorly understood --
important field but poorly understood --
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while it includes, it is not
limited to end of life care.
limited to end of life care.
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It is not limited to hospice.
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It's simply about comfort
and living well at any stage.
and living well at any stage.
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So please know that you don't
have to be dying anytime soon
have to be dying anytime soon
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to benefit from palliative care.
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Now, let me introduce you to Frank.
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Sort of makes this point.
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I've been seeing Frank now for years.
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He's living with advancing prostate cancer
on top of long-standing HIV.
on top of long-standing HIV.
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We work on his bone pain and his fatigue,
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but most of the time we spend thinking
out loud together about his life --
out loud together about his life --
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really, about our lives.
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In this way, Frank grieves.
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In this way, he keeps up with
his losses as they roll in,
his losses as they roll in,
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so that he's ready to take in
the next moment.
the next moment.
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Loss is one thing,
but regret, quite another.
but regret, quite another.
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Frank has always been an adventurer --
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he looks like something
out of a Norman Rockwell painting --
out of a Norman Rockwell painting --
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and no fan of regret.
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So it wasn't surprising
when he came into clinic one day,
when he came into clinic one day,
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saying he wanted to raft
down the Colorado River.
down the Colorado River.
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Was this a good idea?
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With all the risks to his safety
and his health, some would say no.
and his health, some would say no.
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Many did, but he went for it,
while he still could.
while he still could.
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It was a glorious, marvelous trip:
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freezing water, blistering dry heat,
scorpions, snakes,
scorpions, snakes,
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wildlife howling off the flaming walls
of the Grand Canyon --
of the Grand Canyon --
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all the glorious side of the world
beyond our control.
beyond our control.
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Frank's decision, while maybe dramatic,
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is exactly the kind
so many of us would make,
so many of us would make,
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if we only had the support to figure out
what is best for ourselves over time.
what is best for ourselves over time.
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So much of what we're talking about today
is a shift in perspective.
is a shift in perspective.
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After my accident,
when I went back to college,
when I went back to college,
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I changed my major to art history.
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Studying visual art, I figured
I'd learn something about how to see --
I'd learn something about how to see --
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a really potent lesson
for a kid who couldn't change
for a kid who couldn't change
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so much of what he was seeing.
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Perspective, that kind of alchemy
we humans get to play with,
we humans get to play with,
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turning anguish into a flower.
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Flash forward: now I work
at an amazing place in San Francisco
at an amazing place in San Francisco
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called the Zen Hospice Project,
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where we have a little ritual
that helps with this shift in perspective.
that helps with this shift in perspective.
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When one of our residents dies,
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the mortuary men come, and as we're
wheeling the body out through the garden,
wheeling the body out through the garden,
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heading for the gate, we pause.
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Anyone who wants --
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fellow residents, family,
nurses, volunteers,
nurses, volunteers,
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the hearse drivers too, now --
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shares a story or a song or silence,
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as we sprinkle the body
with flower petals.
with flower petals.
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It takes a few minutes;
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it's a sweet, simple parting image
to usher in grief with warmth,
to usher in grief with warmth,
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rather than repugnance.
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Contrast that with the typical experience
in the hospital setting,
in the hospital setting,
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much like this -- floodlit room
lined with tubes and beeping machines
lined with tubes and beeping machines
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and blinking lights that don't stop
even when the patient's life has.
even when the patient's life has.
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Cleaning crew swoops in,
the body's whisked away,
the body's whisked away,
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and it all feels as though that person
had never really existed.
had never really existed.
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Well-intended, of course,
in the name of sterility,
in the name of sterility,
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but hospitals tend to assault our senses,
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and the most we might hope for
within those walls is numbness --
within those walls is numbness --
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anesthetic, literally
the opposite of aesthetic.
the opposite of aesthetic.
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I revere hospitals for what they can do;
I am alive because of them.
I am alive because of them.
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But we ask too much of our hospitals.
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They are places for acute trauma
and treatable illness.
and treatable illness.
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They are no place to live and die;
that's not what they were designed for.
that's not what they were designed for.
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Now mind you -- I am not
giving up on the notion
giving up on the notion
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that our institutions
can become more humane.
can become more humane.
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Beauty can be found anywhere.
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I spent a few months in a burn unit
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at St. Barnabas Hospital
in Livingston, New Jersey,
in Livingston, New Jersey,
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where I got really
great care at every turn,
great care at every turn,
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including good
palliative care for my pain.
palliative care for my pain.
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And one night, it began to snow outside.
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I remember my nurses
complaining about driving through it.
complaining about driving through it.
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And there was no window in my room,
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but it was great to just imagine it
coming down all sticky.
coming down all sticky.
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Next day, one of my nurses
smuggled in a snowball for me.
smuggled in a snowball for me.
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She brought it in to the unit.
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I cannot tell you the rapture I felt
holding that in my hand,
holding that in my hand,
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and the coldness dripping
onto my burning skin;
onto my burning skin;
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the miracle of it all,
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the fascination as I watched it melt
and turn into water.
and turn into water.
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In that moment,
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just being any part of this planet
in this universe mattered more to me
in this universe mattered more to me
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than whether I lived or died.
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That little snowball packed
all the inspiration I needed
all the inspiration I needed
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to both try to live
and be OK if I did not.
and be OK if I did not.
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In a hospital, that's a stolen moment.
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In my work over the years,
I've known many people
I've known many people
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who were ready to go, ready to die.
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Not because they had found
some final peace or transcendence,
some final peace or transcendence,
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but because they were so repulsed
by what their lives had become --
by what their lives had become --
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in a word, cut off, or ugly.
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There are already record numbers of us
living with chronic and terminal illness,
living with chronic and terminal illness,
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and into ever older age.
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And we are nowhere near ready
or prepared for this silver tsunami.
or prepared for this silver tsunami.
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We need an infrastructure
dynamic enough to handle
dynamic enough to handle
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these seismic shifts in our population.
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Now is the time to create
something new, something vital.
something new, something vital.
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I know we can because we have to.
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The alternative is just unacceptable.
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And the key ingredients are known:
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policy, education and training,
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systems, bricks and mortar.
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We have tons of input
for designers of all stripes to work with.
for designers of all stripes to work with.
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We know, for example, from research
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what's most important to people
who are closer to death:
who are closer to death:
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comfort; feeling unburdened
and unburdening to those they love;
and unburdening to those they love;
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existential peace; and a sense
of wonderment and spirituality.
of wonderment and spirituality.
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Over Zen Hospice's nearly 30 years,
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we've learned much more
from our residents in subtle detail.
from our residents in subtle detail.
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Little things aren't so little.
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Take Janette.
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She finds it harder to breathe
one day to the next due to ALS.
one day to the next due to ALS.
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Well, guess what?
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She wants to start smoking again --
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and French cigarettes, if you please.
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Not out of some self-destructive bent,
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but to feel her lungs filled
while she has them.
while she has them.
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Priorities change.
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Or Kate -- she just wants to know
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her dog Austin is lying
at the foot of her bed,
at the foot of her bed,
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his cold muzzle against her dry skin,
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instead of more chemotherapy
coursing through her veins --
coursing through her veins --
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she's done that.
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Sensuous, aesthetic gratification,
where in a moment, in an instant,
where in a moment, in an instant,
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we are rewarded for just being.
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So much of it comes down to
loving our time by way of the senses,
loving our time by way of the senses,
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by way of the body -- the very thing
doing the living and the dying.
doing the living and the dying.
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Probably the most poignant room
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in the Zen Hospice guest house
is our kitchen,
is our kitchen,
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which is a little strange when you realize
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that so many of our residents
can eat very little, if anything at all.
can eat very little, if anything at all.
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But we realize we are providing
sustenance on several levels:
sustenance on several levels:
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smell, a symbolic plane.
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Seriously, with all the heavy-duty stuff
happening under our roof,
happening under our roof,
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one of the most tried and true
interventions we know of,
interventions we know of,
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is to bake cookies.
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As long as we have our senses --
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even just one --
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we have at least
the possibility of accessing
the possibility of accessing
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what makes us feel human, connected.
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Imagine the ripples of this notion
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for the millions of people
living and dying with dementia.
living and dying with dementia.
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Primal sensorial delights that say
the things we don't have words for,
the things we don't have words for,
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impulses that make us stay present --
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no need for a past or a future.
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So, if teasing unnecessary suffering out
of the system was our first design cue,
of the system was our first design cue,
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then tending to dignity
by way of the senses,
by way of the senses,
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by way of the body --
the aesthetic realm --
the aesthetic realm --
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is design cue number two.
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Now this gets us quickly to the third
and final bit for today;
and final bit for today;
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namely, we need to lift our sights,
to set our sights on well-being,
to set our sights on well-being,
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so that life and health and healthcare
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can become about making life
more wonderful,
more wonderful,
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rather than just less horrible.
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Beneficence.
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Here, this gets right at the distinction
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between a disease-centered and a patient-
or human-centered model of care,
or human-centered model of care,
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and here is where caring
becomes a creative, generative,
becomes a creative, generative,
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even playful act.
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"Play" may sound like a funny word here.
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But it is also one of our
highest forms of adaptation.
highest forms of adaptation.
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Consider every major compulsory effort
it takes to be human.
it takes to be human.
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The need for food has birthed cuisine.
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The need for shelter
has given rise to architecture.
has given rise to architecture.
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The need for cover, fashion.
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And for being subjected to the clock,
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well, we invented music.
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So, since dying
is a necessary part of life,
is a necessary part of life,
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what might we create with this fact?
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By "play" I am in no way suggesting
we take a light approach to dying
we take a light approach to dying
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or that we mandate
any particular way of dying.
any particular way of dying.
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There are mountains of sorrow
that cannot move,
that cannot move,
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and one way or another,
we will all kneel there.
we will all kneel there.
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Rather, I am asking that we make space --
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physical, psychic room, to allow life
to play itself all the way out --
to play itself all the way out --
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so that rather than just
getting out of the way,
getting out of the way,
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aging and dying can become
a process of crescendo through to the end.
a process of crescendo through to the end.
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We can't solve for death.
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I know some of you are working on this.
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(Laughter)
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Meanwhile, we can --
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(Laughter)
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We can design towards it.
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Parts of me died early on,
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and that's something we can all say
one way or another.
one way or another.
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I got to redesign my life
around this fact,
around this fact,
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and I tell you it has been a liberation
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to realize you can always find
a shock of beauty or meaning
a shock of beauty or meaning
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in what life you have left,
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like that snowball lasting
for a perfect moment,
for a perfect moment,
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all the while melting away.
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If we love such moments ferociously,
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then maybe we can learn to live well --
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not in spite of death,
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but because of it.
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Let death be what takes us,
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not lack of imagination.
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Thank you.
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(Applause)
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ABOUT THE SPEAKER
BJ Miller - Palliative care physicianUsing empathy and a clear-eyed view of mortality, BJ Miller shines a light on healthcare’s most ignored facet: preparing for death.
Why you should listen
Palliative care specialist BJ Miller helps patients face their own deaths realistically, comfortably, and on their own terms. Miller is cultivating a model for palliative care organizations around the world, and emphasizing healthcare’s quixotic relationship to the inevitability of death. He is a hospice and palliative medicine physician and sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center.
Miller’s passion for palliative care stems from personal experience -- a shock sustained while a Princeton undergraduate cost him three limbs and nearly killed him. But his experiences form the foundation of a hard-won empathy for patients who are running out of time.
BJ Miller | Speaker | TED.com