Sunday, February 08, 2015

показатель зрелости государства — сколько человек умирает дома/ Atul Gawande - Being Mortal

В продолжение темы

Книга американского хирурга и эссеиста Атула Гаванде — про индустрию, которая выросла вокруг старения и смерти

Being Mortal: Medicine and What Matters in the End - by Atul Gawande

Хороший показатель зрелости государства — сколько человек умирает дома.
В 1946 году в США таких было большинство — как и в развивающихся странах сегодня: медицина доступна не всем, и где-нибудь в Афганистане далеко не всякий крестьянин, которого свалила с ног пневмония, вообще успевает увидеть врача.
Уже в 1980 году в США дома умирали всего 17% (а подавляющее большинство остальных — в больницах). Победа прогресса вроде бы налицо.
Но с тех пор цифра росла и росла — 23% в 2000 году и 27% в 2010.

Значит ли это, что всем этим людям не хватило денег на койку в палате? Скорее, наоборот: скончаться в своей постели — привилегия, которую все больше людей может себе позволить.

Какие человек произносит последние слова, прежде чем умереть?
В странах «первого мира» этот вопрос теряет смысл, потому что здесь обычно уходят из жизни без сознания, после многих месяцев с трубкой аппарата искусственной вентиляции легких во рту и с катетером в носу — а это исключает всякие разговоры с близкими. Новые медицинские технологии дают возможность поддерживать жизнь достаточно долго, чтобы больной в клинике успевал не торопясь пройти все стадии беспомощности.

Такие рассуждения хорошо смотрелись бы на сайте антимедицинских активистов, которые призывают не тратить деньги зря, спустить в унитаз все таблетки, а от болезней лечиться травами и позитивным мышлением. Однако автор книги Атул Гаванде — 49-летний практикующий американский хирург, стипендиат Фонда Макартуров (эту стипендию принято называть «грантом гениев») и постоянный колумнист журнала New Yorker. Его главная претензия — не к методам медицины, а к тому, что медицина узурпировала проблему старения и умирания.

Высокая средняя продолжительность жизни (в Японии — 84,2 года, в США — 78,8 лет, в России — 70,5) означает не только то, что у пенсионеров появляется время поездить по миру.
Это означает, что существенная часть населения — люди, которые без посторонней помощи не могут себя одеть и приготовить пищу. Спрос на эту помощь порождает целую индустрию, и большая ее часть — с медицинским уклоном. Старик — это в первую очередь пациент, потому что он чем-нибудь да болеет. Значит ли это, что его нужно в первую очередь лечить?

Эрвинг Гоффман (Erving Goffman, 1922-1982), классик социологии повседневности, в 1961 году опубликовал книгу «Asylums: Essays on the Social Situation of Mental Patients and Other Inmates» («Прибежища»; see also), где обнаруживает схожие принципы у лучших клиник и плохих тюрем: это тоталитарные государства в миниатюре. Даже самые приветливые медсестры не отменяют того факта, что в палате под капельницей вы подчиняетесь чужому плану на ваш счет. В традиционной культуре человек долгой успешной жизнью зарабатывает себе право «уважать себя заставить», особенно на смертном одре. Благодаря прогрессу в медицине нобелевские лауреаты и создатели огромных компаний в последние дни жизни безоговорочно подчиняются врачам и нянечкам.

Один и тот же медицинский подход практикуют больницы, куда люди попадают с неоперабельным раком, и дома престарелых, куда попадают относительно здоровые, но немощные старики.
Для начала Атул Гаванде расправляется со стереотипом, что в дома престарелых родителей сбывают одни нерадивые дети. Уход за 90-летним человеком — это серьезная работа: Гаванде подробно разбирает случай семьи, которой понадобилось несколько лет, чтобы признать задачу непосильной.

Другое дело, что альтернативу домам престарелых в США придумали давно.
Что, если разрешить старикам на свой страх и риск пить виски, курить сигареты и жить отдельно — но при условии, что по сигналу тревоги к ним днем и ночью может явиться медсестра, у которой есть ключи от дома?

Специально оборудованные поселки, где старики живут вместе, поблизости от команды медиков, — это практика assisted living, которая появилась в 1980-х. Первый такой поселок под названием Парк-Пэлейс на свой страх и риск построила в Портленде геронтолог Керен Уилсон (Dr. Keren Brown Wilson), измученная чувством вины перед собственной матерью, для которой ничего похожего не нашлось. К 2000 году основанная Уилсон компания Assisted Living Concepts открыла 184 таких заведения в 18 штатах. А потом появились многочисленные подражатели.

Если для многих лет старости этот рецепт годится, то для нескольких месяцев смертельной болезни — вряд ли. Что может помочь от боли и побочных эффектов лекарств? Отказ от идеи, что главная потребность больного — лечение.

Больше всего врачи занимаются теми, кого уже нельзя вылечить. Последний год лечения перед смертью от рака легких обходится в США в среднем в 94.000 долларов — и обычно речь идет о второй или третьей очереди химиотерапии или операциях, которые заведомо не способны спасти, но при удачном исходе отодвигают смерть на месяц или два ценой мучительных побочных эффектов. Для сравнения: в первый год после диагноза пациента то оперируют, то облучают особенно активно в надежде победить или надолго притормозить болезнь (что часто заканчивается успехом), но за все эти процедуры медики выписывают страховщикам средний чек суммой в 28.000 долларов.

Атул Гаванде видит главный изъян в языке врачей: они уже научились говорить людям в лицо, что болезнь не лечится, но не готовы развивать эту тему. Предлагать на выбор лекарства, которые дают человеку все более и более ускользающий шанс выиграть еще неделю или две, проще, чем вовремя сообщить пациенту — ему осталось два месяца или два года, и полезно подумать о том, как ими распорядиться.

Есть целый ряд практических дилемм, которые хорошо бы решить заранее: если в процессе операции возникает выбор между полным параличом и смертью на операционном столе — стоит ли вас реанимировать? Делать операцию сейчас или дать опухоли разрастись?

Атул Гаванде приводит истории своих и чужих пациентов, отвечавших на эти вопросы по-разному.
Профессор психологии в возрасте за 70, который согласился на жизнь паралитика в результате операции, выиграл десять лет жизни в инвалидном кресле и успел написать две книги.
Отец самого Гаванде, прикинув все за и против, согласился отодвинуть операцию на неопределенное будущее, пока опухоль не станет непереносимой, — и подарил себе несколько лет поездок по миру и игры в теннис перед вмешательством хирурга с химиотерапией, которые сделали его беспомощным инвалидом.

Каждый выбирает сам, но главное — вовремя поставить человека перед выбором и дать сделать этот выбор ему самому. А табу на разговоры про смерть и старость мешает тому, чтобы такие вопросы были правильно заданы и правильно осмыслены.

источник: Что делать со стариками

see also: Atul Gawande - The New Yorker

* * *
UPD What should medicine do when it can’t save your life?
by Atul Gawande // The New Yorker // August 2, 2010

The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. 25% of all Medicare spending is for the 5% of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.

Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.

Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”

People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.

For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks.

As the end-of-life researcher Joanne Lynn has observed, people usually experienced life-threatening illness the way they experienced bad weather — as something that struck with little warning — and you either got through it or you didn’t.

Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.

These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition — advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty — with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence.

“Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.

I didn’t know much about hospice. I knew that it specialized in providing “comfort care” for the terminally ill, sometimes in special facilities, though nowadays usually at home. I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months.

Creed took Cox’s arm gently as we walked to the kitchen to sit down, asking her how she had been doing. Then she asked a series of questions, targeting issues that tend to arise in patients with terminal illness. Did Cox have pain? How was her appetite, thirst, sleeping? Any trouble with confusion, anxiety, or restlessness? Had her shortness of breath grown worse? Was there chest pain or heart palpitations? Abdominal discomfort? Trouble with bowel movements or urination or walking?

A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course? “That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now — by performing surgery, providing chemotherapy, putting you in intensive care — for the chance of gaining time later.

Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.

“A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’ ”

They arranged for an electric hospital bed, so that he could sleep with his back raised. They also taught Sharon how to keep Dave clean, protect his skin from breakdown, and handle the crises to come. Creed told me that part of her job is to take the measure of a patient’s family, and Sharon struck her as unusually capable.

An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.

You’d think doctors would be well equipped to navigate the shoals here, but at least two things get in the way. First, our own views may be unrealistic. A study led by the Harvard researcher Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive, and then followed the patients. 63% of doctors overestimated survival time. Just 7% underestimated it. The average estimate was five hundred and thirty per cent too high. And, the better the doctors knew their patients, the more likely they were to err.

Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than 40% of oncologists report offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms — “the customer is always right” — doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic.

In 1985, the paleontologist and writer Stephen Jay Gould published an extraordinary essay entitled “The Median Isn’t the Message,” after he had been given a diagnosis, three years earlier, of abdominal mesothelioma, a rare and lethal cancer usually associated with asbestos exposure. He went to a medical library when he got the diagnosis and pulled out the latest scientific articles on the disease.
“The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median survival of only eight months after discovery,” he wrote. The news was devastating. But then he began looking at the graphs of the patient-survival curves. Gould was a naturalist, and more inclined to notice the variation around the curve’s middle point than the middle point itself. What the naturalist saw was remarkable variation. The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median.
This is where he found solace. He could imagine himself surviving far out in that long tail. And he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer that was unrelated to his original disease.
“It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity,” he wrote in his 1985 essay. “Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”
I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail.

The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?

Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.

To understand La Crosse, Thompson said, you had to go back to 1991, when local medical leaders headed a systematic campaign to get physicians and patients to discuss end-of-life wishes. Within a few years, it became routine for all patients admitted to a hospital, nursing home, or assisted-living facility to complete a multiple-choice form that boiled down to four crucial questions. At this moment in your life, the form asked:
Do you want to be resuscitated if your heart stops? Do you want aggressive treatments such as intubation and mechanical ventilation? Do you want antibiotics? Do you want tube or intravenous feeding if you can’t eat on your own?
By 1996, 85% of La Crosse residents who died had written advanced directives, up from 15%, and doctors almost always knew of and followed the instructions. Having this system in place, Thompson said, has made his job vastly easier. But it’s not because the specifics are spelled out for him every time a sick patient arrives in his unit.

According to experts, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like pity. You should say, “I wish things were different.”
You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”

She told him, “ ‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’ We had this quite agonizing conversation where he said—and this totally shocked me—‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’ “I would never have expected him to say that,” Block went on. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.”

Susan Block and her father had the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint discussion,” a systematic series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or travelling or enjoying chocolate ice cream. Few people have this discussion, and there is good reason for anyone to dread these conversations. They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person’s trust. Handled well, they can take real time.

But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want.

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