Well, we all need a reason to wake up. For me, it just took 11,000 volts.
Svima nama potreban je razlog da se ujutro ustanemo iz kreveta. Meni je za to trebalo samo 11 000 volti.
I know you're too polite to ask, so I will tell you.
Znam da ste prepristojni da pitate, pa ću vam reći.
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!
Jedne večeri na 2. godini faksa, baš nakon praznika za Dan zahvalnosti, nekolicina mojih prijatelja i ja smo se budalesali i odlučili se popeti na parkirani putnički vlak. Samo je stajao tamo, žice su bile na krovu. Tada se to nekako činilo kao izvrsna ideja. Radili smo i glupljih stvari. Popeo sam se na stražnje ljestve i kad sam ustao, struja mi je ušla kroz ruku, pošla prema dolje i prema stopalima i to je bilo to. Možete li vjerovati da taj sat još uvijek radi? Svašta je prošao.
(Laughter)
(Smijeh)
My father wears it now in solidarity.
Sad ga moj otac nosi iz solidarnosti.
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.
Ta je večer započela moju formalnu vezu sa smrti - s mojom smrti - a započela je i moju dugoročnu karijeru pacijenta. Dobra je to riječ. Znači "onaj koji pati". Svi smo mi pacijenti.
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.
Američki zdravstveni sustav nefunkcionalan je koliko i briljantan. Sad sam liječnik za palijativnu njegu u staračkom domu, pa sam vidio kako je njegovati i biti njegovan. Vjerujte mi - gotovo svatko tko se odluči na karijeru u zdravstvu ima najbolje namjere. Zaista ima, ali svi mi koji u njemu radimo smo i nesvjesni agenti sustava koji nerijetko ne služi svrsi.
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.
Zašto? Odgovor na to pitanje prilično je jednostavan i puno toga objašnjava: zdravstvo je dizajnirano imajući u vidu bolesti, a ne ljude, što, naravno, znači da je loše dizajnirano. Posljedice lošeg dizajna nigdje nisu toliko žalosne, ili prilike za dobru zamišljenost toliko stvarne, kao na koncu života kad je sve toliko sažeto i koncentrirano. Tu nema popravaka.
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.
Moj današnji cilj je doprijeti do različitih disciplina i pozvati na razmišljanje o planiranju, odnosno uvesti namjeru i kreativnost u doživljaj umiranja. Pred nama je monumentalna prilika, pred jednim od rijetkih univerzalnih pitanja koja se tiču i pojedinaca, a i civilnog društva: ponovno razmisliti i redizajnirati način na koji umiremo.
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.
Krenimo od kraja. Kad govorimo o smrti, većini ljudi najveći strah nije to što će biti mrtvi, već samo umiranje, patnja. To je glavna razlika. Kako bismo to razumjeli, nekad zna pomoći odvojiti patnju koja je ionako nužna od patnje na koju možemo utjecati. Nužna patnja je prirodna, prirodan dio života, dolazi u paketu, na to se moramo priviknuti. Dobro je uvidjeti sile veće od nas samih koje nam donose proporcionalnost, poput kozmičkog smanjivanja ljudske snage. Kad su mi uklonili udove, taj je gubitak postao činjeničan, fiksiran - nužan dio mog života i shvatio sam da ne mogu odbacivati tu činjenicu, kao ni sebe. Trebalo mi je vremena, ali pomirio sam se s tim. Još jedna sjajna stvar po pitanju nužne patnje jest upravo ono što ujedinjuje pružatelja i primatelja njege - ljudska bića. Konačno uviđamo da se tu odvija ozdravljenje. Da, suosjećanje - kao što smo doslovno jučer naučili - zajednička patnja.
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.
S druge strane, što se sustava tiče, puno je patnje bespotrebno, izmišljeno. Nema neku svrhu. Dobra vijest glasi: budući da je ova vrsta patnje izmišljena, možemo je promijeniti. Na to kako umiremo zaista možemo utjecati. Osvješćivanje sustava o ovoj ključnoj razlici između nužne i bespotrebne patnje dobivamo prvi od triju dizajnerskih tragova za danas. Ipak je naša uloga kao pružatelja skrbi, kao ljudi koji brinu, ublažiti patnju, a ne je dodatno pogoršati.
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.
Prema stanarima staračkog doma, ja sam nešto kao zagovornik refleksije, kao i liječnik koji propisuje terapiju. Kratka digresija - palijativna njega - važno polje koje je slabo shvaćeno - uključuje njegu na kraju života, ali nije ograničeno na njega. Nije ograničeno na hospicij, već se tiče ugode i kvalitetnog življenja u bilo kojoj fazi života. Imajte na umu da se ne morate opasno bližiti smrti da biste imali koristi od palijativne njege.
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.
Upoznajte Franka. On to nekako i dokazuje. Viđam se s njim godinama. Živi s uznapredovanim rakom prostate, kao i s dugogodišnjim virusom HIV. Radimo na njegovoj kostobolji i umoru, ali najviše vremena provodimo razmišljajući naglas o njegovu životu - zapravo, o našim životima. Frank tako tuguje. Tako prati svoje gubitke kako nadolaze, pa je spreman proživjeti sljedeći trenutak. Gubitak je jedna stvar, ali žaljenje je nešto sasvim drugo. Frank je uvijek bio avanturist - izgleda kao da je iskočio sa slike Normana Rockwella - i nije ljubitelj žaljenja. Nije me iznenadilo kad mi je jednog dana došao u kliniku i rekao da želi ići na rafting rijekom Colorado. Je li to bila dobra ideja? Imajući na umu sve rizike po njegovu sigurnost i zdravlje, neki bi rekli - ne. Mnogi i jesu, ali odvažio se na to dok je još mogao. Bio je to veličanstven, sjajan put: ledena voda, strašna vrućina, škorpioni, zmije, zavijanje divljih životinja širilo se uzavrelim zidinama Grand Canyona - sva veličanstvena strana svijeta koja je izvan naše kontrole. Iako je Frankova odluka bila dramatična, to je i odluka na kakvu bi se mnogi od nas odvažili kad bi imali podršku osmisliti što je za nas najbolje, dugoročno gledano.
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.
Puno toga o čemu danas govorimo tiče se promjene u perspektivi. Nakon nesreće, vratio sam se na faks i promijenio glavni studij u povijest umjetnosti. Mislio sam da ću proučavajući likovnu umjetnost naučiti kako vidjeti - bila je to moćna lekcija za mladića koji nije mogao promijeniti puno opažanoga. Perspektiva, svojevrsna alkemija kojom se mi ljudi igramo - pretvaramo muku u cvijet.
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.
Sad radim na krasnom mjestu u San Francisku koji se zove Hospicijski projekt Zen gdje imamo mali ritual koji pomaže s ovim promjenama perspektive. Kad jedan od naših stanara umre, dolaze mrtvozornici i vozimo tijelo kroz vrt, idemo prema vratima i zastanemo. Svatko tko želi - drugi stanari, obitelj, sestre, volonteri, pa i vozači mrtvačkih kola - s ostalima podijeli priču, pjesmu ili tišinu dok tijelo posipamo laticama cvijeća. Traje nekoliko minuta; to je dražesna, jednostavna slika kojom tugu pratimo toplinom, a ne gađenjem. Usporedite to s uobičajenim iskustvom u bolnici koje izgleda ovako nekako - osvijetljena soba puna cijevi i aparata i svjetla koja neprestano trepere, pa čak i nakon smrti pacijenta. Dolaze čistačice, tijelo jurno odvoze iz prostorije i čini se kao da ta osoba nikad nije ni postojala. Naravno, sve u najboljoj namjeri, u ime sterilnosti, ali bolnice vrše udar na naša osjetila, a najviše čemu se možemo nadati unutar tih zidova jest otupjelost - anestetik - doslovno suprotnost estetici. Cijenim bolnice zbog svega što rade, zbog njih sam danas živ, ali previše tražimo od naših bolnica. To su mjesta za akutne traume i izlječive bolesti. To nisu mjesta za život i smrt; nisu za to zamišljene.
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.
Pazite, ne odričem se ideje da naše institucije mogu postati humanije. Ljepotu možemo pronaći svugdje. Nekoliko mjeseci proveo sam na odjelu za opekotine u bolnici sv. Barnabe u Livingstonu, New Jersey gdje mi je pružana sjajna njega na svakom koraku uključujući i izvrsnu palijativnu njegu za moje bolove. Jedne je večeri počelo sniježiti. Sjećam se da su se sestre žalile što moraju voziti kroz taj snijeg. U sobi nije bilo prozora, ali bilo je zabavno zamišljati ga kako pada. Sljedećeg dana jedna od mojih sestara prokrijumčarila mi je grudu snijega. Donijela ju je na odjel. Ne mogu vam opisati koliko sam se sjajno osjećao držeći je u ruci dok je hladnoća kapala po mojoj uzavreloj koži; koliko je to čudesno bilo, fascinacija s kojom sam promatrao kako se pretvara u vodu. U tom trenutku sama činjenica da sam bilo koji dio ovog planeta u svemiru značilo mi je više od činjenice hoću li živjeti ili umrijeti. Da gruda snijega nosila je inspiraciju koja mi je bila potrebna da pokušam živjeti i da mi ne smeta ako i ne poživim. U bolnici je to ukraden trenutak.
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.
Tijekom godina karijere upoznao sam mnoge ljude koji su bili spremni na smrt - ne zato što su pronašli konačan spokoj ili transcedenciju, nego zato što im se zgadilo to na što su im se životi sveli - Jednom riječju - odvojeni ili ružni. Već postoji rekordni broj nas koji živimo s kroničnim i terminalnim bolestima, pa čak i u starijoj dobi. Nismo ni blizu spremni ili pripravni za ovaj srebrni tsunami. Treba nam dovoljno dinamična infrastruktura koja će se nositi s ovim seizmičkim promjenama u našoj populaciji. Sad je vrijeme da stvorimo nešto novo, nešto ključno. Znam da to možemo jer to moramo. Alternativa je jednostavno neprihvatljiva, a ključni sastojci su poznati: politika, odgoj i obrazovanje i obuka, sustavi, cigle i žbuka. Imamo hrpu materijala s kojima mogu raditi dizajneri svih orijentacija.
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.
Npr. iz istraživanja znamo što je najvažnije ljudima koji se bliže smrti: ugoda; osjećaj neopterećenosti i nestvaranja tereta onima koje vole; egzistencijalni mir; osjećaj čuđenja i duhovnosti.
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.
U gotovo trideset godina hospicija Zen puno smo više detalja naučili od naših stanara. Male stvari i nisu toliko male. Npr. Janette je svakim danom sve teže disati zbog ALS-a. Znate što? Želi ponovno početi pušiti, i to francuske cigarete. Ne iz nekog auto-destruktivnog hira, već kako bi osjetila kako joj se pluća pune dok ih još uvijek ima. Prioriteti se mijenjaju. Ili npr. Kate koja samo želi znati da njezin pas Austin leži ispred njezinog kreveta, njegova hladna njuška na njezinoj suhoj koži umjesto dodatne kemoterapije koja joj teče venama - učinila je to. Senzualna, estetička zadovoljština u kojoj u trenutku, u sekundi dobijemo nagradu samo zato što postojimo. Toliko se toga svodi na uživanje u preostalom vremenu putem osjetila, putem tijela - onoga što je zaslužno za život i smrt.
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.
Vjerojatno najbolnija soba u gostinjskoj kući hospicija Zen naša je kuhinja, što je malo neobično kad shvatite da toliko naših stanara jede vrlo malo ili nimalo. Svjesni smo da im pružamo podršku na nekoliko različitih razina: miris, simboličke osnove. Ozbiljno, sa svim obvezama koje su se odvijale pod našim krovom, jedna od najboljih intervencija koje smo otkrili jest pečenje kolača. Sve dok imamo osjetila - makar samo jedno - imamo barem mogućnost pristupa onome zbog čega se osjećamo kao ljudi, povezano. Zamislite posljedice ovoga za milijune ljudi koji žive i umiru s demencijom. Osnovni senzorni užici koji govore stvari za koje mi nemamo riječi, impulsi koji nam pomažu da ostanemo u sadašnjosti - bez potrebe za prošlosti ili budućnosti.
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.
Ako nam je prvi dizajnerski trag bio uklanjanje nepotrebne patnje iz sustava, onda je težnja dostojanstvu putem osjetila, putem tijela - estetski realm - drugi dizajnerski trag. To nas je brzo dovelo do trećeg i posljednjeg dijela; moramo podići pogled i pažnju usmjeriti na našu dobrobit kako bi se život i zdravlje i zdravstvo više usredotočio na uljepšavanje života, umjesto na uklanjanje užasnosti. Dobrotvornost.
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. The need for shelter has given rise to architecture. The need for cover, fashion. And for being subjected to the clock, well, we invented music. So, since dying is a necessary part of life, what might we create with this fact? By "play" I am in no way suggesting we take a light approach to dying or that we mandate any particular way of dying. There are mountains of sorrow that 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 life to play itself all the way out -- so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end. We can't solve for death. I know some of you are working on this.
Ovo pokazuje razliku između modela brige usmjerenog na bolest i onog usmjerenog na pacijenta, čovjeka. Tu briga postaje kreativni, proizvodni, pa čak i zaigran čin. Riječ "igra" ovdje se može učiniti čudnom, ali to je ujedno jedan od najviših oblika prilagođavanja. Razmislite o svakom većem obveznom naporu koji moramo napraviti da bismo bili ljudi. Potreba za hranom izrodila je kuharstvo. Potreba za skloništem izrodila je arhitekturu. Potreba za pokrivanjem - modu. A kako bismo se podredili satu, izumili smo glazbu. Budući da je umiranje nužan dio življenja, što možemo učiniti s tom činjenicom? "Igrom" nikako ne predlažem da olako pristupimo smrti ili da naredimo kako umirati. Brda tuge ne možemo pomaknuti i bilo kako bilo, svi ćemo pred njima pokleknuti. Zapravo tražim da napravimo mjesta - fizičkog, psihičkog mjesta da pustimo život da se sam odigra do kraja i da umjesto da mu se samo izmičemo, starenje i umiranje može postati proces koji se razvija sve do kraja. Ne možemo izliječiti smrt. Znam da neki od vas rade na tome.
(Laughter)
(Smijeh)
Meanwhile, we can --
U međuvremenu možemo -
(Laughter)
(Smijeh)
We can design towards it. Parts of me died early on, and that's something we can all say one way or another. I got to redesign my life around this fact, and I tell you it has been a liberation to realize you can always find a shock of beauty or meaning in what life you have left, like that snowball lasting for 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.
- možemo dizajnirati prema njoj. Dijelovi mene rano su umrli, a to svi mi možemo reći za sebe ovako ili onako. Dobio sam priliku redizajnirati svoj život oko te činjenice i mogu vam reći da je bilo oslobađajuće shvatiti da uvijek možete pronaći iznenađujuću ljepotu ili smisao u životu koji vam je preostao, poput one grude snijega koja je stvorila savršen trenutak topeći se. Ako divljački volimo te trenutke, onda možda možemo naučiti dobro živjeti - ne u inat smrti, već zbog nje. Neka smrt bude ono što će nas izbrisati, a ne manjak mašte.
Thank you.
Hvala vam.
(Applause)
(Pljesak)