What would be a good end of life? And I'm talking about the very end. I'm talking about dying.
Kako bi izgledao dobar kraj života? Govorim o samome kraju. Govorim o smrti.
We all think a lot about how to live well. I'd like to talk about increasing our chances of dying well. I'm not a geriatrician. I design reading programs for preschoolers. What I know about this topic comes from a qualitative study with a sample size of two. In the last few years, I helped two friends have the end of life they wanted. Jim and Shirley Modini spent their 68 years of marriage living off the grid on their 1,700-acre ranch in the mountains of Sonoma County. They kept just enough livestock to make ends meet so that the majority of their ranch would remain a refuge for the bears and lions and so many other things that lived there. This was their dream.
Svi mi mnogo razmišljamo o tome kako dobro živjeti. Želim govoriti o tome kako povećati šanse da dobro umremo. Nisam gerijatar. Dizajniram programe za čitanje za predškolsku djecu. Sve što znam o ovoj temi dolazi iz kvalitetne studije s uzorkom od dvije osobe. U zadnjih nekoliko godina, pomogla sam dvama prijateljima da imaju kraj života kakav su željeli. Jim i Shirley Modini proveli su 68 godina u braku živeći povučeno na njihovom posjedu od 1700 hektara u planinama okruga Sonoma. Uzgajali su tek toliko stoke da spoje kraj s krajem tako da je većina njihovog posjeda ostala utočištem za medvjede i lavove i mnoge druge životinje koje su ondje živjele. To je bio njihov san.
I met Jim and Shirley in their 80s. They were both only children who chose not to have kids. As we became friends, I became their trustee and their medical advocate, but more importantly, I became the person who managed their end-of-life experiences. And we learned a few things about how to have a good end.
Upoznala sam Jima i Shirley u njihovim osamdesetima. Oboje su bili jedinci koji su odlučili da ne žele imati djecu. Kako smo postali prijatelji, ja sam postala njihov staratelj i medicinski zaštitnik, ali što je puno važnije, postala sam osoba koja je pomogla u njihovim zadnjim životnim iskustvima. Naučili smo nekoliko stvari o tome kako doživjeti dobar kraj.
In their final years, Jim and Shirley faced cancers, fractures, infections, neurological illness. It's true. At the end, our bodily functions and independence are declining to zero. What we found is that, with a plan and the right people, quality of life can remain high. The beginning of the end is triggered by a mortality awareness event, and during this time, Jim and Shirley chose ACR nature preserves to take their ranch over when they were gone. This gave them the peace of mind to move forward. It might be a diagnosis. It might be your intuition. But one day, you're going to say, "This thing is going to get me." Jim and Shirley spent this time letting friends know that their end was near and that they were okay with that.
U njihovim posljednjim godinama, Jim i Shirley suočili su se s karcinomima, prijelomima, infekcijama, neurološkom bolešću. Istina je. Na kraju, naše tjelesne funkcije i samostalnost sve se više približavaju ništici. Otkrili smo da, uz dobar plan i prave ljude, kvaliteta života može ostati visoka. Početak kraja potaknut je događajem koji potiče svijest o smrtnosti, i tijekom tog vremena, Jim i Shirley odlučili su da ACR prirodni rezervat preuzme njihov posjed kada ih više ne bude. Ovo im je dalo duševni mir da nastave dalje. To može biti dijagnoza. Može biti vaša intuicija. Ali jednog dana, reći ćete: „Ovo će me dokrajčiti“. Jim i Shirely proveli su to vrijeme obznanjujući prijateljima da je kraj blizu i da su oni pomireni s tim.
Dying from cancer and dying from neurological illness are different. In both cases, last days are about quiet reassurance. Jim died first. He was conscious until the very end, but on his last day he couldn't talk. Through his eyes, we knew when he needed to hear again, "It is all set, Jim. We're going to take care of Shirley right here at the ranch, and ACR's going to take care of your wildlife forever."
Smrt od karcinoma i smrt od neurološke bolesti se razlikuju. No u oba slučaja, zadnji su dani provedeni u tihom mirovanju. Jim je umro prvi. Bio je svjestan do samoga kraja, ali nije mogao govoriti na svoj zadnji dan. U njegovim očima, vidjeli smo da je opet trebao čuti: „Sve je spremno, Jim. Pobrinut ćemo se za Shirley ovdje na posjedu, i ACR će se zauvijek brinuti za vaše životinje.“
From this experience I'm going to share five practices. I've put worksheets online, so if you'd like, you can plan your own end.
Podijelit ću s vama 5 postupaka koje sam naučila iz ovog iskustva. Postavila sam smjernice online, pa ako želite, možete isplanirati svoj vlastiti kraj.
It starts with a plan. Most people say, "I'd like to die at home." Eighty percent of Americans die in a hospital or a nursing home. Saying we'd like to die at home is not a plan. A lot of people say, "If I get like that, just shoot me." This is not a plan either; this is illegal. (Laughter) A plan involves answering straightforward questions about the end you want. Where do you want to be when you're no longer independent? What do you want in terms of medical intervention? And who's going to make sure your plan is followed?
Počinje s planom. Većina ljudi kaže: „Volio bih umrijeti kod kuće“. Osamdeset posto Amerikanaca umire u bolnici ili u staračkom domu. Reći da bismo voljeli umrijeti kod kuće nije plan. Mnogi ljudi kažu: „Ako završim tako, upucaj me“. Ni to nije plan, to je ilegalno. (Smijeh) Plan uključuje odgovaranje na izravna pitanja o tome kakav kraj želite. Gdje želite biti kada više niste samostalni? Što želite u pogledu medicinske intervencije? Tko će se brinuti za to da se vaš plan slijedi?
You will need advocates. Having more than one increases your chance of getting the end you want. Don't assume the natural choice is your spouse or child. You want someone who has the time and proximity to do this job well, and you want someone who can work with people under the pressure of an ever-changing situation.
Trebat ćete zagovornike. Imati više od jednog povećava šanse da imate kraj kakav vi želite. Nemojte pretpostaviti da je prirodan izbor vaš partner ili dijete. Želite nekoga tko ima vrijeme i blizinu da taj posao obavi dobro, i želite nekoga tko može raditi s ljudima pod pritiskom situacije koja se neprestano mijenja.
Hospital readiness is critical. You are likely to be headed to the emergency room, and you want to get this right. Prepare a one-page summary of your medical history, medications and physician information. Put this in a really bright envelope with copies of your insurance cards, your power of attorney, and your do-not-resuscitate order. Have advocates keep a set in their car. Tape a set to your refrigerator. When you show up in the E.R. with this packet, your admission is streamlined in a material way.
Ključna je pripremljenost za bolnicu. Vrlo je vjerojatno da ćete dospjeti u sobu za hitne slučajeve, i želite to obaviti kako treba. Pripremite sažetak vaše medicinske povijesti na jednoj stranici, lijekove i zdravstvene informacije. Pospremite to u jarku omotnicu zajedno s kopijama vaše kartice osiguranja, opunomoćenja, i odlukom za ne-oživljavanje. Neka vaši zagovornici drže jedan set u njihovom autu. Zalijepite jedan set na hladnjak. Kada se pojavite u sobi za hitne slučajeve s tim paketom, materijalno ste osigurani.
You're going to need caregivers. You'll need to assess your personality and financial situation to determine whether an elder care community or staying at home is your best choice. In either case, do not settle. We went through a number of not-quite-right caregivers before we found the perfect team led by Marsha, who won't let you win at bingo just because you're dying but will go out and take videos of your ranch for you when you can't get out there, and Caitlin, who won't let you skip your morning exercises but knows when you need to hear that your wife is in good hands.
Trebat ćete skrbnike. Morat ćete procijeniti vašu duševnu i financijsku situaciju kako biste odredili je li starački dom ili ostanak kod kuće vaša najbolja opcija. U svakom slučaju, nemojte praviti kompromise. Mi smo prošli kroz priličan broj nedovoljno dobrih skrbnika prije nego što smo pronašli savršeni tim kojeg je vodila Marsha, koja vam ne bi dala da pobijedite u bingu samo zato što umirete, ali će izaći van i snimiti video vašeg posjeda kada ne možete sami izaći. I Catilin, koja vam neće dozvoliti da preskočite jutarnju tjelovježbu, ali zna kada trebate čuti da vam je žena u dobrim rukama.
Finally, last words. What do you want to hear at the very end, and from whom would you like to hear it? In my experience, you'll want to hear that whatever you're worried about is going to be fine. When you believe it's okay to let go, you will.
Konačno, posljednje riječi. Što želite čuti na samome kraju i od koga to želite čuti? Iz moga iskustva, željet ćete čuti da će s onim što vas brine biti sve u redu. Kada vjerujete da je sve u redu, prepustit ćete se.
So, this is a topic that normally inspires fear and denial. What I've learned is if we put some time into planning our end of life, we have the best chance of maintaining our quality of life. Here are Jim and Shirley just after deciding who would take care of their ranch. Here's Jim just a few weeks before he died, celebrating a birthday he didn't expect to see. And here's Shirley just a few days before she died being read an article in that day's paper about the significance of the wildlife refuge at the Modini ranch.
Ovo je tema koja inače potiče strah i poricanje. Naučila sam da ako uložimo vrijeme u planiranje kraja života, imamo dobru šansu da održimo kvalitetu života. Ovo su Jim i Shirley nakon što su odlučili tko će se brinuti za njihov posjed. Ovo je Jim samo nekoliko tjedana prije nego što je preminuo, slaveći rođendan za koji nije mislio da će ga dočekati. A ovo je Shirley samo nekoliko dana prije smrti kako sluša članak iz dnevnih novina o značaju utočišta za divlje životinje na posjedu Modini.
Jim and Shirley had a good end of life, and by sharing their story with you, I hope to increase our chances of doing the same.
Jim i Shirley imali su dobar kraj života, i dijeljenjem njihove priče s vama, nadam se da ću povećati naše šanse da doživimo to isto.
Thank you.
Hvala vam.
(Applause)
(Pljesak)