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  • Well, we all need a reason to wake up.

  • For me, it just took 11,000 volts.

  • I know you're too polite to ask,

  • so I will tell you.

  • One night, sophomore year of college,

  • just back from Thanksgiving holiday,

  • a few of my friends and I were horsing around,

  • and we decided to climb atop a parked commuter train.

  • It was just sitting there, with the wires that run overhead.

  • Somehow, that seemed like a great idea at the time.

  • We'd certainly done stupider things.

  • I scurried up the ladder on the back,

  • and when I stood up,

  • the electrical current entered my arm,

  • blew down and out my feet, and that was that.

  • Would you believe that watch still works?

  • Takes a licking!

  • (Laughter)

  • My father wears it now in solidarity.

  • That night began my formal relationship with death -- my death --

  • and it also began my long run as a patient.

  • It's a good word.

  • It means one who suffers.

  • So I guess we're all patients.

  • Now, the American health care system

  • has more than its fair share of dysfunction --

  • to match its brilliance, to be sure.

  • I'm a physician now, a hospice and palliative medicine doc,

  • so I've seen care from both sides.

  • And believe me: almost everyone who goes into healthcare

  • really means well -- I mean, truly.

  • But we who work in it are also unwitting agents

  • for a system that too often does not serve.

  • Why?

  • Well, there's actually a pretty easy answer to that question,

  • and it explains a lot:

  • because healthcare was designed with diseases, not people, at its center.

  • Which is to say, of course, it was badly designed.

  • And nowhere are the effects of bad design more heartbreaking

  • or the opportunity for good design more compelling

  • than at the end of life,

  • where things are so distilled and concentrated.

  • There are no do-overs.

  • My purpose today is to reach out across disciplines

  • and invite design thinking into this big conversation.

  • That is, to bring intention and creativity

  • to the experience of dying.

  • We have a monumental opportunity in front of us,

  • before one of the few universal issues

  • as individuals as well as a civil society:

  • to rethink and redesign how it is we die.

  • So let's begin at the end.

  • For most people, the scariest thing about death isn't being dead,

  • it's dying, suffering.

  • It's a key distinction.

  • To get underneath this, it can be very helpful

  • to tease out suffering which is necessary as it is,

  • from suffering we can change.

  • The former is a natural, essential part of life, part of the deal,

  • and to this we are called to make space, adjust, grow.

  • It can be really good to realize forces larger than ourselves.

  • They bring proportionality,

  • like a cosmic right-sizing.

  • After my limbs were gone,

  • that loss, for example, became fact, fixed --

  • necessarily part of my life,

  • and I learned that I could no more reject this fact than reject myself.

  • It took me a while, but I learned it eventually.

  • Now, another great thing about necessary suffering

  • is that it is the very thing

  • that unites caregiver and care receiver --

  • human beings.

  • This, we are finally realizing, is where healing happens.

  • Yes, compassion -- literally, as we learned yesterday --

  • suffering together.

  • Now, on the systems side, on the other hand,

  • so much of the suffering is unnecessary, invented.

  • It serves no good purpose.

  • But the good news is, since this brand of suffering is made up,

  • well, we can change it.

  • How we die is indeed something we can affect.

  • Making the system sensitive to this fundamental distinction

  • between necessary and unnecessary suffering

  • gives us our first of three design cues for the day.

  • After all, our role as caregivers, as people who care,

  • is to relieve suffering -- not add to the pile.

  • True to the tenets of palliative care,

  • I function as something of a reflective advocate,

  • as much as prescribing physician.

  • Quick aside: palliative care -- a very important field but poorly understood --

  • while it includes, it is not limited to end of life care.

  • It is not limited to hospice.

  • It's simply about comfort and living well at any stage.

  • So please know that you don't have to be dying anytime soon

  • to benefit from palliative care.

  • Now, let me introduce you to Frank.

  • Sort of makes this point.

  • I've been seeing Frank now for years.

  • He's living with advancing prostate cancer on top of long-standing HIV.

  • We work on his bone pain and his fatigue,

  • but most of the time we spend thinking out loud together about his life --

  • really, about our lives.

  • In this way, Frank grieves.

  • In this way, he keeps up with his losses as they roll in,

  • so that he's ready to take in the next moment.

  • Loss is one thing, but regret, quite another.

  • Frank has always been an adventurer --

  • he looks like something out of a Norman Rockwell painting --

  • and no fan of regret.

  • So it wasn't surprising when he came into clinic one day,

  • saying he wanted to raft down the Colorado River.

  • Was this a good idea?

  • With all the risks to his safety and his health, some would say no.

  • Many did, but he went for it, while he still could.

  • It was a glorious, marvelous trip:

  • freezing water, blistering dry heat, scorpions, snakes,

  • wildlife howling off the flaming walls of the Grand Canyon --

  • all the glorious side of the world beyond our control.

  • Frank's decision, while maybe dramatic,

  • is exactly the kind so many of us would make,

  • if we only had the support to figure out what is best for ourselves over time.

  • So much of what we're talking about today is a shift in perspective.

  • After my accident, when I went back to college,

  • I changed my major to art history.

  • Studying visual art, I figured I'd learn something about how to see --

  • a really potent lesson for a kid who couldn't change

  • so much of what he was seeing.

  • Perspective, that kind of alchemy we humans get to play with,

  • turning anguish into a flower.

  • Flash forward: now I work at an amazing place in San Francisco

  • called the Zen Hospice Project,

  • where we have a little ritual that helps with this shift in perspective.

  • When one of our residents dies,

  • the mortuary men come, and as we're wheeling the body out through the garden,

  • heading for the gate, we pause.

  • Anyone who wants --

  • fellow residents, family, nurses, volunteers,

  • the hearse drivers too, now --

  • shares a story or a song or silence,

  • as we sprinkle the body with flower petals.

  • It takes a few minutes;

  • it's a sweet, simple parting image to usher in grief with warmth,

  • rather than repugnance.

  • Contrast that with the typical experience in the hospital setting,

  • much like this -- floodlit room lined with tubes and beeping machines

  • and blinking lights that don't stop even when the patient's life has.

  • Cleaning crew swoops in, the body's whisked away,

  • and it all feels as though that person had never really existed.

  • Well-intended, of course, in the name of sterility,

  • but hospitals tend to assault our senses,

  • and the most we might hope for within those walls is numbness --

  • anesthetic, literally the opposite of aesthetic.

  • I revere hospitals for what they can do; I am alive because of them.

  • But we ask too much of our hospitals.

  • They are places for acute trauma and treatable illness.

  • They are no place to live and die; that's not what they were designed for.

  • Now mind you -- I am not giving up on the notion

  • that our institutions can become more humane.

  • Beauty can be found anywhere.

  • I spent a few months in a burn unit

  • at St. Barnabas Hospital in Livingston, New Jersey,

  • where I got really great care at every turn,

  • including good palliative care for my pain.

  • And one night, it began to snow outside.

  • I remember my nurses complaining about driving through it.

  • And there was no window in my room,

  • but it was great to just imagine it coming down all sticky.

  • Next day, one of my nurses smuggled in a snowball for me.

  • She brought it in to the unit.

  • I cannot tell you the rapture I felt holding that in my hand,

  • and the coldness dripping onto my burning skin;

  • the miracle of it all,

  • the fascination as I watched it melt and turn into water.

  • In that moment,

  • just being any part of this planet in this universe mattered more to me

  • than whether I lived or died.

  • That little snowball packed all the inspiration I needed

  • to both try to live and be OK if I did not.

  • In a hospital, that's a stolen moment.

  • In my work over the years, I've known many people

  • who were ready to go, ready to die.

  • Not because they had found some final peace or transcendence,

  • but because they were so repulsed by what their lives had become --

  • in a word, cut off, or ugly.

  • There are already record numbers of us living with chronic and terminal illness,

  • and into ever older age.

  • And we are nowhere near ready or prepared for this silver tsunami.

  • We need an infrastructure dynamic enough to handle

  • these seismic shifts in our population.

  • Now is the time to create something new, something vital.

  • I know we can because we have to.

  • The alternative is just unacceptable.

  • And the key ingredients are known:

  • policy, education and training,

  • systems, bricks and mortar.

  • We have tons of input for designers of all stripes to work with.

  • We know, for example, from research

  • what's most important to people who are closer to death:

  • comfort; feeling unburdened and unburdening to those they love;

  • existential peace; and a sense of wonderment and spirituality.

  • Over Zen Hospice's nearly 30 years,

  • we've learned much more from our residents in subtle detail.

  • Little things aren't so little.

  • Take Janette.

  • She finds it harder to breathe one day to the next due to ALS.

  • Well, guess what?

  • She wants to start smoking again --

  • and French cigarettes, if you please.

  • Not out of some self-destructive bent,

  • but to feel her lungs filled while she has them.

  • Priorities change.

  • Or Kate -- she just wants to know

  • her dog Austin is lying at the foot of her bed,

  • his cold muzzle against her dry skin,

  • instead of more chemotherapy coursing through her veins --

  • she's done that.

  • Sensuous, aesthetic gratification, where in a moment, in an instant,

  • we are rewarded for just being.

  • So much of it comes down to loving our time by way of the senses,

  • by way of the body -- the very thing doing the living and the dying.

  • Probably the most poignant room

  • in the Zen Hospice guest house is our kitchen,

  • which is a little strange when you realize

  • that so many of our residents can eat very little, if anything at all.

  • But we realize we are providing sustenance on several levels:

  • smell, a symbolic plane.

  • Seriously, with all the heavy-duty stuff happening under our roof,

  • one of the most tried and true interventions we know of,

  • is to bake cookies.

  • As long as we have our senses --

  • even just one --

  • we have at least the possibility of accessing

  • what makes us feel human, connected.

  • Imagine the ripples of this notion

  • for the millions of people living and dying with dementia.

  • Primal sensorial delights that say the things we don't have words for,

  • impulses that make us stay present --

  • no need for a past or a future.

  • So, if teasing unnecessary suffering out of the system was our first design cue,

  • then tending to dignity by way of the senses,

  • by way of the body -- the aesthetic realm --

  • is design cue number two.

  • Now this gets us quickly to the third and final bit for today;

  • namely, we need to lift our sights, to set our sights on well-being,

  • so that life and health and healthcare

  • can become about making life more wonderful,

  • rather than just less horrible.

  • Beneficence.

  • Here, this gets right at the distinction

  • between a disease-centered and a patient- or human-centered model of care,

  • and here is where caring becomes a creative, generative,

  • even playful act.

  • "Play" may sound like a funny word here.

  • But it is also one of our highest forms of adaptation.

  • Consider every major compulsory effort it takes to be human.

  • The need for food has birthed cuisine.