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TED Talks, Judy MacDonald Johnston: Prepare for a good end of life

Judy MacDonald Johnston: Prepare for a good end of life

What would be a good end of life?

And I'm talking about the very end. I'm talking about dying.

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.

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.

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.

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. " 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.

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?

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.

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.

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.

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.

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.

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.

Thank you.

(Applause)

Judy MacDonald Johnston: Prepare for a good end of life Judy MacDonald Johnston Prepárese para un buen final de vida Judy MacDonald Johnston : Préparer une bonne fin de vie Judy MacDonald Johnston: Przygotuj się na dobry koniec życia Judy MacDonald Johnston: Preparar-se para um bom fim de vida 朱迪-麦克唐纳-约翰斯顿为美好的生命终结做好准备

What would be a good end of life? O que seria um bom fim de vida?

And I’m talking about the very end. E eu estou falando sobre o fim. I’m talking about dying. Eu estou falando sobre morrer.

We all think a lot about how to live well. Todos pensamos muito em como viver bem. I’d like to talk about increasing our chances of dying well. Eu gostaria de falar sobre como aumentar nossas chances de morrer bem. I’m not a geriatrician. Eu não sou geriatra. I design reading programs for preschoolers. Eu desenho programas de leitura para crianças em idade pré-escolar. What I know about this topic comes from a qualitative study with a sample size of two. O que eu sei sobre esse tópico vem de um estudo qualitativo com uma amostra de dois. In the last few years, I helped two friends have the end of life they wanted. Nos últimos anos, ajudei dois amigos a terem o fim da vida que desejavam. 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. Jim e Shirley Modini passaram seus 68 anos de casamento vivendo fora da rede em seu rancho de 1.700 acres nas montanhas do condado de Sonoma. 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. Eles mantinham gado apenas o suficiente para sobreviver, de modo que a maioria de sua fazenda continuaria sendo um refúgio para os ursos e leões e muitas outras coisas que viviam lá. This was their dream. Esse era o sonho deles.

I met Jim and Shirley in their 80s. Eu conheci Jim e Shirley nos seus 80 anos. They were both only children who chose not to have kids. Ambos eram filhos únicos que optaram por não ter filhos. 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. Quando nos tornamos amigos, tornei-me administrador e advogado médico, mas, mais importante, tornei-me a pessoa que administrou suas experiências no final da vida. And we learned a few things about how to have a good end. E aprendemos algumas coisas sobre como ter um bom final.

In their final years, Jim and Shirley faced cancers, fractures, infections, neurological illness. Nos últimos anos, Jim e Shirley enfrentaram câncer, fraturas, infecções, doenças neurológicas. It’s true. At the end, our bodily functions and independence are declining to zero. No final, nossas funções corporais e independência estão diminuindo para zero. What we found is that, with a plan and the right people, quality of life can remain high. O que descobrimos é que, com um plano e as pessoas certas, a qualidade de vida pode permanecer alta. 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. O início do fim é desencadeado por um evento de conscientização da mortalidade e, durante esse período, Jim e Shirley escolheram as reservas naturais da ACR para assumir seu rancho quando elas se foram. This gave them the peace of mind to move forward. Isso lhes deu a tranqüilidade de seguir em frente. It might be a diagnosis. Pode ser um diagnóstico. It might be your intuition. Pode ser a sua intuição. But one day, you’re going to say, "This thing is going to get me." Mas um dia você dirá: "Essa coisa vai me pegar". Jim and Shirley spent this time letting friends know that their end was near and that they were okay with that. Jim e Shirley passaram esse tempo informando aos amigos que seu fim estava próximo e que eles estavam bem com isso.

Dying from cancer and dying from neurological illness are different. Morrer de câncer e morrer de doenças neurológicas são diferentes. In both cases, last days are about quiet reassurance. Nos dois casos, os últimos dias são tranquilos. Jim died first. Jim morreu primeiro. He was conscious until the very end, but on his last day he couldn’t talk. Ele estava consciente até o fim, mas em seu último dia não conseguiu falar. Through his eyes, we knew when he needed to hear again, "It is all set, Jim. Através de seus olhos, sabíamos quando ele precisava ouvir novamente: "Está tudo pronto, 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. " Nós vamos cuidar de Shirley aqui no rancho, e a ACR cuidará da sua vida selvagem para sempre. " From this experience I’m going to share five practices. A partir dessa experiência, vou compartilhar cinco práticas. I’ve put worksheets online, so if you’d like, you can plan your own end. Coloquei planilhas on-line, então, se você quiser, pode planejar seu próprio fim.

It starts with a plan. Começa com um plano. Most people say, "I’d like to die at home." A maioria das pessoas diz: "Gostaria de morrer em casa". Eighty percent of Americans die in a hospital or a nursing home. Oitenta por cento dos americanos morrem em um hospital ou em um lar de idosos. Saying we’d like to die at home is not a plan. Dizer que gostaríamos de morrer em casa não é um plano. A lot of people say, "If I get like that, just shoot me." Muitas pessoas dizem: "Se eu ficar assim, apenas atire em mim". This is not a plan either; this is illegal. Este também não é um plano; isso é ilegal. (Laughter) A plan involves answering straightforward questions about the end you want. (Risos) Um plano envolve responder a perguntas diretas sobre o fim que você deseja. Where do you want to be when you’re no longer independent? Onde você quer estar quando não é mais independente? What do you want in terms of medical intervention? O que você quer em termos de intervenção médica? And who’s going to make sure your plan is followed? E quem vai garantir que seu plano seja seguido?

You will need advocates. Você precisará de advogados. Having more than one increases your chance of getting the end you want. Ter mais de um aumenta sua chance de obter o fim desejado. Don’t assume the natural choice is your spouse or child. Não assuma que a escolha natural é seu cônjuge ou filho. 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. Você quer alguém que tenha tempo e proximidade para fazer esse trabalho bem, e alguém que possa trabalhar com pessoas sob a pressão de uma situação em constante mudança.

Hospital readiness is critical. A prontidão do hospital é crítica. You are likely to be headed to the emergency room, and you want to get this right. É provável que você esteja indo para a sala de emergência e deseja fazer isso direito. Prepare a one-page summary of your medical history, medications and physician information. Prepare um resumo de uma página do seu histórico médico, medicamentos e informações médicas. Put this in a really bright envelope with copies of your insurance cards, your power of attorney, and your do-not-resuscitate order. Coloque isso em um envelope realmente brilhante com cópias de seus cartões de seguro, sua procuração e seu pedido de não ressuscitar. Have advocates keep a set in their car. Peça aos advogados que mantenham um conjunto no carro. Tape a set to your refrigerator. Cole um aparelho na geladeira. When you show up in the E.R. Quando você aparece no pronto-socorro with this packet, your admission is streamlined in a material way. com este pacote, sua admissão é simplificada de maneira material.

You’re going to need caregivers. Você vai precisar de cuidadores. 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. Você precisará avaliar sua personalidade e situação financeira para determinar se uma comunidade de idosos ou ficar em casa é sua melhor escolha. In either case, do not settle. Em ambos os casos, não se acomode. 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. Passamos por vários cuidadores não muito corretos antes de encontrarmos o time perfeito liderado por Marsha, que não permite que você ganhe no bingo apenas porque está morrendo, mas sai e grava vídeos de seu rancho quando você não pode chegar lá e Caitlin, que não deixa você pular seus exercícios matinais, mas sabe quando precisa ouvir que sua esposa está em boas mãos.

Finally, last words. Finalmente, últimas palavras. What do you want to hear at the very end, and from whom would you like to hear it? O que você quer ouvir no final e de quem você gostaria de ouvir? In my experience, you’ll want to hear that whatever you’re worried about is going to be fine. Na minha experiência, você vai querer ouvir que tudo o que você está preocupado vai ficar bem. When you believe it’s okay to let go, you will. Quando você acredita que não há problema em deixar ir, você o fará.

So, this is a topic that normally inspires fear and denial. Portanto, este é um tópico que normalmente inspira medo e negação. 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. O que aprendi é que, se dedicarmos algum tempo ao planejamento de nosso fim de vida, teremos as melhores chances de manter nossa qualidade de vida. Here are Jim and Shirley just after deciding who would take care of their ranch. Aqui estão Jim e Shirley logo depois de decidir quem cuidaria de seu rancho. Here’s Jim just a few weeks before he died, celebrating a birthday he didn’t expect to see. Aqui está Jim, apenas algumas semanas antes de morrer, comemorando um aniversário que ele não esperava ver. 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. E aqui está Shirley, poucos dias antes de morrer, lendo um artigo no jornal daquele dia sobre o significado do refúgio de vida selvagem na fazenda 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 e Shirley tiveram um bom final de vida e, compartilhando sua história com você, espero aumentar nossas chances de fazer o mesmo.

Thank you.

(Applause)