ideen für hässliches bad
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 iwere horsing around, and we decided to climb atopa parked commuter train. it was just sitting there,with the wires that run overhead.
somehow, that seemedlike 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 relationshipwith death -- my death -- and it also beganmy 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 shareof 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 everyonewho goes into healthcare really means well -- i mean, truly. but we who work in itare also unwitting agents for a system that too oftendoes not serve. why? well, there's actually a pretty easyanswer to that question, and it explains a lot:
because healthcare was designedwith diseases, not people, at its center. which is to say, of course,it was badly designed. and nowhere are the effectsof bad design more heartbreaking or the opportunityfor good design more compelling than at the end of life, where things are so distilledand concentrated. there are no do-overs. my purpose today isto reach out across disciplines and invite design thinkinginto this big conversation.
that is, to bring intention and creativity to the experience of dying. we have a monumentalopportunity 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 thingabout 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 sufferingwhich 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 calledto make space, adjust, grow. it can be really goodto 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 morereject this fact than reject myself. it took me a while,but i learned it eventually. now, another great thingabout 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 sufferingis 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 indeedsomething we can affect.
making the system sensitiveto this fundamental distinction between necessaryand unnecessary suffering gives us our first of threedesign 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 somethingof a reflective advocate, as much as prescribing physician. quick aside: palliative care -- a veryimportant field but poorly understood --
while it includes, it is notlimited to end of life care. it is not limited to hospice. it's simply about comfortand living well at any stage. so please know that you don'thave 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 canceron top of long-standing hiv.
we work on his bone pain and his fatigue, but most of the time we spend thinkingout loud together about his life -- really, about our lives. in this way, frank grieves. in this way, he keeps up withhis losses as they roll in, so that he's ready to take inthe next moment. loss is one thing,but regret, quite another. frank has always been an adventurer -- he looks like somethingout of a norman rockwell painting --
and no fan of regret. so it wasn't surprisingwhen he came into clinic one day, saying he wanted to raftdown the colorado river. was this a good idea? with all the risks to his safetyand 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 wallsof the grand canyon --
all the glorious side of the worldbeyond our control. frank's decision, while maybe dramatic, is exactly the kindso many of us would make, if we only had the support to figure outwhat is best for ourselves over time. so much of what we're talking about todayis a shift in perspective. after my accident,when i went back to college, i changed my major to art history. studying visual art, i figuredi'd learn something about how to see -- a really potent lessonfor a kid who couldn't change
so much of what he was seeing. perspective, that kind of alchemywe humans get to play with, turning anguish into a flower. flash forward: now i workat an amazing place in san francisco called the zen hospice project, where we have a little ritualthat helps with this shift in perspective. when one of our residents dies, the mortuary men come, and as we'rewheeling 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 bodywith flower petals. it takes a few minutes; it's a sweet, simple parting imageto usher in grief with warmth, rather than repugnance. contrast that with the typical experiencein the hospital setting,
much like this -- floodlit roomlined with tubes and beeping machines and blinking lights that don't stopeven when the patient's life has. cleaning crew swoops in,the body's whisked away, and it all feels as though that personhad 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 forwithin those walls is numbness -- anesthetic, literallythe 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 traumaand treatable illness. they are no place to live and die;that's not what they were designed for. now mind you -- i am notgiving up on the notion that our institutionscan become more humane. beauty can be found anywhere. i spent a few months in a burn unit at st. barnabas hospitalin livingston, new jersey, where i got reallygreat care at every turn,
including goodpalliative care for my pain. and one night, it began to snow outside. i remember my nursescomplaining about driving through it. and there was no window in my room, but it was great to just imagine itcoming down all sticky. next day, one of my nursessmuggled in a snowball for me. she brought it in to the unit. i cannot tell you the rapture i feltholding that in my hand, and the coldness drippingonto my burning skin;
the miracle of it all, the fascination as i watched it meltand turn into water. in that moment, just being any part of this planetin this universe mattered more to me than whether i lived or died. that little snowball packedall the inspiration i needed to both try to liveand 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 foundsome final peace or transcendence, but because they were so repulsedby what their lives had become -- in a word, cut off, or ugly. there are already record numbers of usliving with chronic and terminal illness, and into ever older age. and we are nowhere near readyor prepared for this silver tsunami. we need an infrastructuredynamic enough to handle these seismic shifts in our population.
now is the time to createsomething 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 inputfor designers of all stripes to work with. we know, for example, from research what's most important to peoplewho are closer to death:
comfort; feeling unburdenedand unburdening to those they love; existential peace; and a senseof wonderment and spirituality. over zen hospice's nearly 30 years, we've learned much morefrom our residents in subtle detail. little things aren't so little. take janette. she finds it harder to breatheone 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 filledwhile she has them. priorities change. or kate -- she just wants to know her dog austin is lyingat the foot of her bed, his cold muzzle against her dry skin, instead of more chemotherapycoursing 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 toloving our time by way of the senses, by way of the body -- the very thingdoing the living and the dying. probably the most poignant room in the zen hospice guest houseis our kitchen, which is a little strange when you realize that so many of our residentscan eat very little, if anything at all. but we realize we are providingsustenance on several levels:
smell, a symbolic plane. seriously, with all the heavy-duty stuffhappening under our roof, one of the most tried and trueinterventions we know of, is to bake cookies. as long as we have our senses -- even just one -- we have at leastthe possibility of accessing what makes us feel human, connected. imagine the ripples of this notion
for the millions of peopleliving and dying with dementia. primal sensorial delights that saythe 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 outof the system was our first design cue, then tending to dignityby way of the senses, by way of the body --the aesthetic realm -- is design cue number two. now this gets us quickly to the thirdand 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 lifemore 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 caringbecomes a creative, generative, even playful act.
"play" may sound like a funny word here. but it is also one of ourhighest forms of adaptation. consider every major compulsory effortit takes to be human. the need for food has birthed cuisine. the need for shelterhas given rise to architecture. the need for cover, fashion. and for being subjected to the clock, well, we invented music. so, since dyingis a necessary part of life,
what might we create with this fact? by "play" i am in no way suggestingwe take a light approach to dying or that we mandateany particular way of dying. there are mountains of sorrowthat cannot move, and one way or another,we will all kneel there. rather, i am asking that we make space -- physical, psychic room, to allow lifeto play itself all the way out -- so that rather than justgetting out of the way, aging and dying can becomea process of crescendo through to the end.
we can't solve for death. i know some of you are working on this. meanwhile, we can -- we can design towards it. parts of me died early on, and that's something we can all sayone way or another. i got to redesign my lifearound this fact, and i tell you it has been a liberation to realize you can always finda shock of beauty or meaning
in what life you have left, like that snowball lastingfor a perfect moment, all the while melting away. if we love such moments ferociously, then maybe we can learn to live well -- not in spite of death, but because of it. let death be what takes us, not lack of imagination.
thank you. (applause)