What would be a good end of life? And I'm talking about the very end. I'm talking about dying.
Šta bi bio dobar kraj životu? Pričam o samom kraju. Pričam 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 mislimo o tome kako je živeti lepo. Volela bih da pričam o povećavanju šansi za lepu smrt. Nisam gerijatričar. Smišljam programe za čitanje za decu u zabavištu. Ono što znam o ovoj temi dolazi iz kvalitativnog istraživanja sa uzorkom od dvoje ljudi. U proteklih nekoliko godina, pomogla sam dvoma prijateljima da imaju kraj života kakav su želeli. Džim i Šerli Modini proveli su 68 godina svog braka živeći samostalno na imanju od 1700 jutara u planinama okruga Sonoma. Držali su samo onoliko stoke koliko je dovoljno za život tako da bi većina njihovog imanja ostala utočište za medvede, lavove i mnoga druga bića koja su tamo živela. Ovo 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.
Džima i Širli sam upoznala u njihovim osamdesetima. Oboje su bili jedinci i odabrali su da nemaju dece. Kako smo se sprijateljili, postala sam njihov staratelj i medicinski savetnik, Ali što je još bitnije, postala sam osoba koja je upravljala njihovim iskustvima sa krajem života. I naučili smo nekoliko stvari o tome kako imati 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 svojim poslednjim godinama, Džim i Širli su se susretali s rakom, frakturama, infekcijama, neurološkim bolestima. Istina je. Pri kraju, naše telesne funkcije i nezavisnost se smanjuju na nulu. Otkrili smo da se sa planom i pravim ljudima, kvalitet života može održati visokim. Početak kraja je pokrenut događajem koji pokazuje smrtnost, i za ovo vreme Džim i Širli su odabrali ACR prirodne rezervate da preuzmu njihov ranč posle njihove smrti. Ovo im je dalo duševni mir potreban za korak dalje. To može biti dijagnoza. Vaša intuicija. Ali jednog dana ćete reći: "Ovo će me dokusuriti." Džim i Širli su ovo vreme proveli obaveštavajući prijatelje da im se bliži kraj i da im to ne smeta.
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."
Nije isto umreti od raka i od neurološke bolesti. U oba slučaja u poslednjim danima se dešava tiha uteha. Džim je prvi umro. Bio je svestan do samog kraja, ali poslednjeg dana nije mogao da priča. Kroz njegove oči smo znali kada mu je ponovo trebalo da čuje: "Sve je sređeno Džime. Mi ćemo se pobrinuti za Širli ovde na imanju, i ACR će zauvek brinuti o tvojim divljim životinjama."
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.
Iz ovog iskustva podeliću pet praksi. Na internet sam stavila radne listove, tako da možete da isplanirate svoj kraj ako želite.
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 sa planom. Većina ljudi kaže: "Voleo bih da umrem kod kuće." 80% Amerikanaca umire u bolnicama ili domovima za stare. Reći da želimo da umremo kod kuće nije plan. Puno ljudi kaže: "Ako ja budem takav, samo me upucajte." Ni ovo nije plan, ovo je protivzakonito. (Smeh) Kod plana se radi o odgovaranju na jednostavna pitanja o kraju koji želite. Gde želite da budete kad ne budete više samostalni? Šta želite od medicinske intervencije? Ko će se postarati da se vaš plan izvrši?
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.
Biće vam potrebni zastupnici. Ako imate više od jednog uvećava se šansa za kraj koji želite. Nemojte pretpostaviti da su prirodan izbor vaš bračni partner ili dete. Želite nekoga ko ima vreme i blizinu da ovaj posao uradi dobro, i želite nekog ko može sa ljudima da radi pod pritiskom situacije koja se uvek menja.
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.
Pripravnost bolnice je ključna. Verovatno će vas odvesti u sobu za hitne slučajeve, i želite da to uradite kako treba. Pripremite jednostrani rezime vaše istorije bolovanja, informacije o lekovima i doktorima. Ovo stavite u kovertu jarke boje sa kopijama kartica za zdravstveno osiguranje, punomoćju, i naređenjem za zabranu oživljavanja. Neka vaši zastupnici drže primerak u svojim automobilima. Prilepite jedan komplet za vaš frižider. Kada se na urgentnom pojavite sa ovim paketom, prijava vam se poboljšava na materijalan način.
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.
Biće vam potrebni staratelji. Moraćete proceniti vašu ličnost i finansijsku situaciju i odrediti da li je za vas najbolje da budete u domu za stare ili u sopstvenom domu. Svakako se nemojte samo pomiriti s tim. Prošli smo kroz nekoliko ne baš sjajnih staratelja pre nego što smo našli savršeni tim na čelu s Maršom, koja vas neće pustiti da pobedite u bingu samo zato što umirete, nego će otići i snimiti vaše imanje za vas, kada vi ne možete da odete tamo. Tu je i Kejtlin koja vam neće dozvoliti da preskočite jutarnje vežbe, ali zna kada vam je potrebno da čujete da vam je supruga 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.
Na kraju, poslednje reči. Šta želite da čujete na samom kraju, i od koga želite to da čujete? Iz mog iskustva, želećete da čujete da će biti u redu šta god to bilo o čemu brinete. Kada verujete da je u redu da se pustite, to ćete i uraditi.
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 obično pokreće strah i poricanje. Naučila sam da ako uložimo nešto vremena u planiranje kraja našeg života, imamo najbolju šansu da održimo kvalitet našeg života. Ovde su Džim i Širli nakon odlučivanja o tome ko će brinuti o njihovom imanju. Ovde je Džim samo nekoliko nedelja pre smrti, slavi rođendan koji nije očekivao da će dočekati. A ovde je Širli samo nekoliko dana pre smrti kako joj čitaju članak u dnevnim novinama o značaju utočišta za divlje životinje na imanju 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.
Džim i Širli imali su dobar kraj života i time što delim njihovu priču sa vama nadam se da ću povećati šanse da se i vama desi isto.
Thank you.
Hvala vam.
(Applause)
(Aplauz)