TED日本語 - ピーター・サウル: 死に方を話し合おう


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TED日本語 - ピーター・サウル: 死に方を話し合おう

TED Talks

Let's talk about dying - Peter Saul


「死ぬこと自体は変えられないが、『死を占拠』することはできる」というのはピーター・サウル博士の言葉です。終末期医療について希望を明確にすることを勧め、そのきっかけとなる2つの問いかけを提案しています。(TEDxNewy にて収録)


Look, I had second thoughts, really, about whether I could talk about this to such a vital and alive audience as you guys. Then I remembered the quote from Gloria Steinem, which goes, "The truth will set you free, but first it will piss you off." (Laughter) So -- (Laughter)

So with that in mind, I'm going to set about trying to do those things here, and talk about dying in the 21st century. Now the first thing that will piss you off, undoubtedly, is that all of us are, in fact, going to die in the 21st century. There will be no exceptions to that. There are, apparently, about one in eight of you who think you're immortal, on surveys, but -- (Laughter) Unfortunately, that isn't going to happen.

While I give this talk, in the next 10 minutes, a hundred million of my cells will die, and over the course of today,2,000 of my brain cells will die and never come back, so you could argue that the dying process starts pretty early in the piece.

Anyway, the second thing I want to say about dying in the 21st century, apart from it's going to happen to everybody, is it's shaping up to be a bit of a train wreck for most of us, unless we do something to try and reclaim this process from the rather inexorable trajectory that it's currently on.

So there you go. That's the truth. No doubt that will piss you off, and now let's see whether we can set you free. I don't promise anything. Now, as you heard in the intro, I work in intensive care, and I think I've kind of lived through the heyday of intensive care. It's been a ride, man. This has been fantastic. We have machines that go ping. There's many of them up there. And we have some wizard technology which I think has worked really well, and over the course of the time I've worked in intensive care, the death rate for males in Australia has halved, and intensive care has had something to do with that. Certainly, a lot of the technologies that we use have got something to do with that.

So we have had tremendous success, and we kind of got caught up in our own success quite a bit, and we started using expressions like "lifesaving." I really apologize to everybody for doing that, because obviously, we don't. What we do is prolong people's lives, and delay death, and redirect death, but we can't, strictly speaking, save lives on any sort of permanent basis.

And what's really happened over the period of time that I've been working in intensive care is that the people whose lives we started saving back in the '70s, '80s, and '90s, are now coming to die in the 21st century of diseases that we no longer have the answers to in quite the way we did then.

So what's happening now is there's been a big shift in the way that people die, and most of what they're dying of now isn't as amenable to what we can do as what it used to be like when I was doing this in the '80s and '90s.

So we kind of got a bit caught up with this, and we haven't really squared with you guys about what's really happening now, and it's about time we did. I kind of woke up to this bit in the late '90s when I met this guy. This guy is called Jim, Jim Smith, and he looked like this. I was called down to the ward to see him. His is the little hand. I was called down to the ward to see him by a respiratory physician. He said, "Look, there's a guy down here. He's got pneumonia, and he looks like he needs intensive care. His daughter's here and she wants everything possible to be done." Which is a familiar phrase to us. So I go down to the ward and see Jim, and his skin his translucent like this. You can see his bones through the skin. He's very, very thin, and he is, indeed, very sick with pneumonia, and he's too sick to talk to me, so I talk to his daughter Kathleen, and I say to her, "Did you and Jim ever talk about what you would want done if he ended up in this kind of situation?" And she looked at me and said, "No, of course not!" I thought, "Okay. Take this steady." And I got talking to her, and after a while, she said to me, "You know, we always thought there'd be time."

Jim was 94. (Laughter) And I realized that something wasn't happening here. There wasn't this dialogue going on that I imagined was happening. So a group of us started doing survey work, and we looked at four and a half thousand nursing home residents in Newcastle, in the Newcastle area, and discovered that only one in a hundred of them had a plan about what to do when their hearts stopped beating. One in a hundred. And only one in 500 of them had plan about what to do if they became seriously ill. And I realized, of course, this dialogue is definitely not occurring in the public at large.

Now, I work in acute care. This is John Hunter Hospital. And I thought, surely, we do better than that. So a colleague of mine from nursing called Lisa Shaw and I went through hundreds and hundreds of sets of notes in the medical records department looking at whether there was any sign at all that anybody had had any conversation about what might happen to them if the treatment they were receiving was unsuccessful to the point that they would die. And we didn't find a single record of any preference about goals, treatments or outcomes from any of the sets of notes initiated by a doctor or by a patient.

So we started to realize that we had a problem, and the problem is more serious because of this.

What we know is that obviously we are all going to die, but how we die is actually really important, obviously not just to us, but also to how that features in the lives of all the people who live on afterwards. How we die lives on in the minds of everybody who survives us, and the stress created in families by dying is enormous, and in fact you get seven times as much stress by dying in intensive care as by dying just about anywhere else, so dying in intensive care is not your top option if you've got a choice.

And, if that wasn't bad enough, of course, all of this is rapidly progressing towards the fact that many of you, in fact, about one in 10 of you at this point, will die in intensive care. In the U.S., it's one in five. In Miami, it's three out of five people die in intensive care. So this is the sort of momentum that we've got at the moment.

The reason why this is all happening is due to this, and I do have to take you through what this is about. These are the four ways to go. So one of these will happen to all of us. The ones you may know most about are the ones that are becoming increasingly of historical interest: sudden death. It's quite likely in an audience this size this won't happen to anybody here. Sudden death has become very rare. The death of Little Nell and Cordelia and all that sort of stuff just doesn't happen anymore. The dying process of those with terminal illness that we've just seen occurs to younger people. By the time you've reached 80, this is unlikely to happen to you. Only one in 10 people who are over 80 will die of cancer.

The big growth industry are these. What you die of is increasing organ failure, with your respiratory, cardiac, renal, whatever organs packing up. Each of these would be an admission to an acute care hospital, at the end of which, or at some point during which, somebody says, enough is enough, and we stop.

And this one's the biggest growth industry of all, and at least six out of 10 of the people in this room will die in this form, which is the dwindling of capacity with increasing frailty, and frailty's an inevitable part of aging, and increasing frailty is in fact the main thing that people die of now, and the last few years, or the last year of your life is spent with a great deal of disability, unfortunately.

Enjoying it so far? (Laughs) (Laughter) Sorry, I just feel such a, I feel such a Cassandra here. (Laughter)

What can I say that's positive? What's positive is that this is happening at very great age, now. We are all, most of us, living to reach this point. You know, historically, we didn't do that. This is what happens to you when you live to be a great age, and unfortunately, increasing longevity does mean more old age, not more youth. I'm sorry to say that. (Laughter) What we did, anyway, look, what we did, we didn't just take this lying down at John Hunter Hospital and elsewhere. We've started a whole series of projects to try and look about whether we could, in fact, involve people much more in the way that things happen to them. But we realized, of course, that we are dealing with cultural issues, and this is, I love this Klimt painting, because the more you look at it, the more you kind of get the whole issue that's going on here, which is clearly the separation of death from the living, and the fear - Like, if you actually look, there's one woman there who has her eyes open. She's the one he's looking at, and [ she's ] the one he's coming for. Can you see that? She looks terrified. It's an amazing picture.

Anyway, we had a major cultural issue. Clearly, people didn't want us to talk about death, or, we thought that. So with loads of funding from the Federal Government and the local Health Service, we introduced a thing at John Hunter called Respecting Patient Choices. We trained hundreds of people to go to the wards and talk to people about the fact that they would die, and what would they prefer under those circumstances. They loved it. The families and the patients, they loved it. Ninety-eight percent of people really thought this just should have been normal practice, and that this is how things should work. And when they expressed wishes, all of those wishes came true, as it were. We were able to make that happen for them. But then, when the funding ran out, we went back to look six months later, and everybody had stopped again, and nobody was having these conversations anymore. So that was really kind of heartbreaking for us, because we thought this was going to really take off. The cultural issue had reasserted itself.

So here's the pitch: I think it's important that we don't just get on this freeway to ICU without thinking hard about whether or not that's where we all want to end up, particularly as we become older and increasingly frail and ICU has less and less and less to offer us. There has to be a little side road off there for people who don't want to go on that track. And I have one small idea, and one big idea about what could happen.

And this is the small idea. The small idea is, let's all of us engage more with this in the way that Jason has illustrated. Why can't we have these kinds of conversations with our own elders and people who might be approaching this? There are a couple of things you can do. One of them is, you can, just ask this simple question. This question never fails. "In the event that you became too sick to speak for yourself, who would you like to speak for you?" That's a really important question to ask people, because giving people the control over who that is produces an amazing outcome. The second thing you can say is, "Have you spoken to that person about the things that are important to you so that we've got a better idea of what it is we can do?" So that's the little idea.

The big idea, I think, is more political. I think we have to get onto this. I suggested we should have Occupy Death. (Laughter) My wife said, "Yeah, right, sit-ins in the mortuary. Yeah, yeah. Sure." (Laughter) So that one didn't really run, but I was very struck by this. Now, I'm an aging hippie. I don't know, I don't think I look like that anymore, but I had,two of my kids were born at home in the '80s when home birth was a big thing, and we baby boomers are used to taking charge of the situation, so if you just replace all these words of birth, I like "Peace, Love, Natural Death" as an option. I do think we have to get political and start to reclaim this process from the medicalized model in which it's going.

Now, listen, that sounds like a pitch for euthanasia. I want to make it absolutely crystal clear to you all, I hate euthanasia. I think it's a sideshow. I don't think euthanasia matters. I actually think that, in places like Oregon, where you can have physician-assisted suicide, you take a poisonous dose of stuff, only half a percent of people ever do that. I'm more interested in what happens to the 99.5 percent of people who don't want to do that. I think most people don't want to be dead, but I do think most people want to have some control over how their dying process proceeds. So I'm an opponent of euthanasia, but I do think we have to give people back some control. It deprives euthanasia of its oxygen supply. I think we should be looking at stopping the want for euthanasia, not for making it illegal or legal or worrying about it at all.

This is a quote from Dame Cicely Saunders, whom I met when I was a medical student. She founded the hospice movement. And she said, "You matter because you are, and you matter to the last moment of your life." And I firmly believe that that's the message that we have to carry forward. Thank you. (Applause)

実はかなり迷いました 皆さんのような元気な人達を前に こんな話をしてもいいものか グロリア・スタイネムの 言葉です 「真実は貴方を解放する しかし その前にまず貴方を怒らせるだろう」 ということで(笑)

それを念頭において お話しするのは 21世紀の死です 腹の立つ真実の一つ目は 私達はみんな21世紀中に 死ぬこと 例外はありません 調査によると8人に一人は 不死身だと思っていますが (笑) 残念ながらそういう訳には行きません

今から10分間私が話す間にも 1億もの細胞が死んでいき 今日中に2千の脳細胞が 死んでしまうので 死の過程は早くから 始まると言えます

21世紀の死について2つ目は 死は不可避である上に やや悲惨な様相を 呈していることです 容赦ない軌道に乗っている死の過程を 改善しなければならない

それが真実です 頭には来ますが 自由にはなれるでしょうか 集中治療が私の仕事です 集中治療の全盛期を経験しました 色々なことがあって 最高でした モニターとか音の鳴る機械が たくさんある職場です すごい技術のおかげで 私が働き始めてから オーストラリア男性の死亡率が 半減しました 集中治療の成果です さまざまな技術を駆使した おかげでもあります

大変な成功を収めて すっかり浮かれてしまい 「救命」などという言葉を使い始めてしまいました 誤解を招いたことを お詫びします 私達がするのは延命で 死を先延ばしにし 遠回りさせる事は出来ても 永続的な救命はできないのです

集中治療で働いていて 目の当たりにしていることですが 70年代から90年代にかけて 私達が命を救った人達は21世紀になって 当時とは違う解決策のない病気で 死んでいこうとしています

人の死に方に大きな変化が 起きているのです 現在の死因の多くは 80年代や90年代のように 治療が可能なものではありません

この対応に追われていて いま何が起こっているのか きちんと説明していませんでした 90年代後半にこの人に出会って 目が覚めました 彼の名前はジム・スミスといいます 細い方が彼の手です 彼の様子を見るよう 呼吸科医に 呼ばれました 「肺炎に罹った患者がいる 集中治療が必要だ 娘さんは あらゆる手を 尽くしてくれと言っている」 私達には聞き慣れた言葉です 病室に様子を見に行くと 皮膚が透けて 骨が見えるほどです やせ細って 重度の肺炎に罹っていました 話は無理なので 娘のキャスリーンに向かってこう聞きました 「こういう状況になった時 どうしたいのか 話し合ったことは?」 彼女は私を見て「ある訳ないでしょう!」 「落ち着かせなきゃ」と思いました しばらくして彼女はこう言いました 「まだ先のことだと思ってた」

ジムは94歳でした(笑) それで気づきました何かが欠けている あるはずの 対話が持たれていない そこで調査を始めて ニューカッスル周辺の 養護施設に住む4,500人に当たりました 心停止の際のプランがあるのは 100人のうち1人だけでした 100人中1人ですよ 重体になった際どうするか考えている人は 500人中たったの1人だけ この対話は社会全般では 全くなされていないと気がつきました

現職は救急医療です ジョン・ハンター病院です 我々の病院ではこんなはずではないと 同僚のリサ・ショウと一緒に 何百もの診療記録を 調べました 受けている治療が効かず 死ぬ可能性がある場合 患者の希望を話し合ったような 会話の記録を探しましたが 医師や患者が始めた記録のどこにも 目標や治療や成果についての 希望は一つも書いてありませんでした

これは問題だと やっと気づきました 問題は更に深刻ですというのも

誰でも死ぬ事は知っていますが 死に方も大切だからです 本人だけでなく 先立たれた人達の 人生にも影響するからです 残された人達の心に 死に様が生き続けるのです 死による家族のストレスは甚大で 集中治療室で死ぬ場合のストレスは 他で死ぬ場合の7倍です 選べるなら 集中治療室では 死なない方がいい

ところが残念ながら 集中治療室で死ぬ人は急速に増えていて 10人に一人は集中治療室で 死ぬことになりそうです アメリカでは 5人に一人マイアミは5人に3人 そういう勢いです これが現状です

その理由はこれです 説明しましょう 4つの死に方です 誰もがこの一つで死にます よくご存知なのは その重要性が過去のものとなりつつある 突然死でしょう ここにいる位の人数だと 突然死する人はいません 突然死は稀になりました 悲劇のヒロインのような死は もう起きません この末期疾患の 死に方は 若い人に多く 80歳以上では少ないです 80歳以上で癌で死ぬのは10人に一人だけ

大幅に増加している死因はこちらです 臓器不全で死ぬ人が増えています 呼吸器 心臓 腎臓など 臓器の機能が止まったら 救急病院に入院です そして もう十分だと言われるまで 治療を続けます

そして これが最大の成長分野 今日お集まりの10人中6人は これが理由で死にます 衰弱がひどくなることに伴う 身体能力の衰えです 衰えは老化において避けられませんが だんだん衰弱することが 現代人の主な死因です 残念ながら晩年は かなりの障害をもって過ごすことになります

楽しんでます?(笑) (笑) 悲劇の預言者みたいな気分だ (笑)

明るい話をしましょう 衰弱するほど高齢まで 長生きする人が多いということです 昔は違いました 長生きすれば こういう死に方になるのです 延びるのは老年期だけで 若年期は増えません 残念な事ですが(笑) 私たち病院などの関係者は 死についての問題を 見過ごしませんでした 不測の事態の備えに もっと関わってもらおうと 一連のプロジェクトを始めました もちろん 文化上の問題も承知でした クリムトの絵です よく見ると 本質的なことが 描かれていますつまり― 生と死ははっきり分かれるということ そして恐怖 目を開けた 女性がいます 死神は彼女を 狙っています見えますか? 彼女は怯えている 素晴らしい絵です

ともかく文化上の理由で 人は死の話を聞きたがらない そう予想しました そこで政府と公共医療機関から 予算をもらい 我々の病院で事前ケア計画を導入しました 研修を受けた数百人が 病棟を訪ね患者たちに死の話をして 終末期の希望を聞きました 患者も家族も大変喜びました 98%がこれを普通の診療として あるべき形と 思ってくれました 伝えられた希望は 全て叶いました 実現できたのです しかし予算が底をつき 半年後に確認したら 打ち切りになっていました 誰もこの対話をしなくなり とても残念なことでした うまくいくと思ったのに 死を嫌う文化の問題は根強かったんです

本題です ICU行きの高速に乗ってもいいのか 真剣に考えることが とても大切です 老い衰えるほど ICUで出来る事は少ないのです その道を望まない 人達のための横道がないといけません 将来に関して 私には 小さいアイデアと大きなアイデアがあります

小さい方は ジェイソンの提案のように ローテクな方法で参加しましょう こういう会話を お年寄りや 死が近い人と持ちましょう できる事が2つ 1つ目はシンプルで 誰でもできる失敗のない問いかけです 「重体で意思伝達ができなくなったら 誰に代弁してほしいですか?」 大事な質問です 誰に代弁を頼むかという決定権を 本人が持つことで結果が違ってきますからね 2つ目は 「何が大切か 私達にも伝わるよう 代弁者の方に言い残してありますか?」 それが小さいアイデアです

大きい方は 皆で力を合わせて 「死を占拠」するべきです (笑) 妻は「あーはいはい 死体安置所で座り込みね」(笑) そうは行きませんでしたが ピンと来ました 実は 私はヒッピーです この歳ではそう見えないでしょうが うちの子達は80年代に 当時話題だった 自宅出産で生まれましたベビーブーマー世代なので 何でも自分主導でやりたくて あの頃の「誕生」を「死」に置き換えるわけです 「平和 愛 自然死」なんていいと思います 現行の医療重視の モデルからプロセスを 取り戻すべきです

安楽死肯定に聞こえるが はっきり言います 安楽死は大嫌いです 実際大した問題でもないと 思っています 医師のほう助による 自殺ができるオレゴン州でも 毒を摂取するのは 0.5%の人だけです 99.5%はそれを望まなかった 私はそちらに興味があります 人は死にたくないが 自分の死の過程は 自分でコントロールしたい 安楽死には反対です 本人に決定権を戻すべきです そうすることで安楽死を廃止するのです 安楽死が必要だという考えを なくすべきです違法か合法かは問題ではありません

学生の時に出会ったシシリー・ソンダース博士の 言葉です ホスピス活動創始者です 「貴方は貴方ゆえ大切なのです 貴方の人生の最後の瞬間まで大切です」 このメッセージを 推進すべきと固く信じています ありがとう(拍手)

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