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Medicine and What Matters in the End
(The Science of Us)
Football and chocolate ice cream are the two somewhat unlikely images that stuck with me after reading Being Mortal: Medicine and What Matters in the End, Atul Gawande's powerful new book on aging, death, and end-of-life care. Because Gawande, the surgeon, Harvard Medical School professor, and New Yorker staff writer, poses this as the central question of the book: If your time becomes short, what is most important to you? What, in other words, is your definition of a happy, purposeful life?
For one man featured in Gawande's new book, the answer is simple. As long as he's alert enough to watch a football game, and as long as he has the ability to eat chocolate ice cream, that's enough. He's happy. Everyone's answer to this question will be a little different, and Gawande's point is that every answer matters. It's the radical idea that everyone, even the ailing and the aged, deserves to lead a meaningful life, a notion that runs contrary to the way many old-age homes are conceptualized.
Gawande recently talked to Science of Us about his new book, and how to keep life worth living, even for those who, through sickness or old age, are mostly dependent on others.
Your book is about mortality. But, as you've said yourself, it's less about what makes for a good death than what makes for a good life, all the way up to the final days. So what do we get wrong about the way we currently view illness and aging, especially in those final years when independent living becomes less possible?
I think what we've really lost sight of, both in medicine and society, is that we don't recognize that people have priorities besides just living longer. We all have things we care about; we all have reasons we want to be alive. And preserving those reasons is fundamentally important.
What I mean is - we have no imagination. We have no actual picture of what a good life might be when you are dependent. The assumption is, Well, jeez, if I'm in a wheelchair, if I have to be helped going to the bathroom and getting dressed, then I can't have a purpose in living, or, I can't add meaning to the world. And so that's what's so incredibly depressing about the possibility of the end of life, and what's going to happen to you when you move into an old-age home.
On the subject of nursing homes - one incredibly memorable person in your book is Bill Thomas, who, you write, really helped to change the thinking behind a lot of these institutions. Can you talk about how his vision helped introduce a new way of thinking about life at this stage?
So, Bill Thomas came in as the new medical director of a nursing home in upstate New York. It was a progressive nursing home, and they had lots of things they were doing that were really great. But the elderly there - he said it brought him down to be around them. He described the people as suffering from the three plagues: boredom, loneliness, and helplessness. You know, a life of television, bingo, and group scheduled activities is not one that anybody looks forward to.
And so he started thinking, What's missing here is life. You know, think of in your own home, there's spontaneity; there are things that you have responsibility for.
The other thing to know about Bill is that he ran his own farm there in upstate New York. So he connected those two parts of his life, and said, Why don't I give these people pets? And not just a pet here and there. We're talking two dogs, four cats, a hundred parakeets, laying hens, rabbits - I mean, it was a menagerie. And he had to go up against the New York State regulators, but it was eventually approved.
And an incredible thing started to happen. Someone would have a pair of parakeets in their room, and this would be someone who had been more or less mute for weeks - you know, just, flat, depressed. Maybe they'd hardly left their bed for a long time. And these birds would get put in their room. And for the first week, they'd just watch the birds. And then the next week, they would speak, for maybe the first time in a long time - they'd tell the nurse, You're not feeding the birds properly. And then, the week after, they'd get out of bed, and say, Goddamn it, I'm just going to feed the bird myself.
I love that story. So what did this mean to the residents of this nursing home?
You're giving people a chance to have responsibility for the care of, not only themselves, but of a household, and others in the household. And this turned out to be this critical turn of the key for many of them. The amount of medication required fell, and survival went up. And people took notice.
But I have to stop here and say that this is part of the thing that drives me crazy. When we look at these kinds of stories, we say, And it helped them live longer! It's like, no, that's not the point. The point is that it let them live better. It's the idea that you could provide an intervention that could provide people a reason to be alive. That's the amazing and most important thing.
And it didn't boil down to how the animals saved them. It boiled down the idea that people need to have purposes in their lives, and that you could offer ways that they could connect to them. That they could live for something larger than just being alive.
You write that it's not just that this experiment gave the residents a purpose. The significance was that many of us assume it's not even possible for life to have a purpose at that stage - when you're old, dependent, and in a home. Can you talk about what you mean by that? Why do we assume this of the elderly?
To answer that question, I'm going to borrow something one of the innovators in this area, Keren Brown Wilson, told me. She said that we want safety for those we love and we want autonomy for ourselves. When we're looking at the adult children working with our parents, these places figure out that it's the children making the decisions, and so the first thing they tell you is how safe they are. But they don't tell you how - or if - they go about keeping people connected to the things that they most care about in life.
So I visited a place up in Massachusetts that took this very different philosophy. Instead of putting a dozen rooms around a nursing station, for example, they put them around a kitchen. And the elderly could go into the kitchen, and they could open the refrigerator, and they could get whatever they wanted. That kind of unstructured spontaneity - do you know how controversial that is? A diabetic might go into the refrigerator and take a soda. Someone might even grab a beer, horror of horrors. And, according to our rules, that would be unsafe.
One of the most common reasons elderly people in nursing homes get written up is for food violations. Oh, and by the way - you're living in a place where you can get written up! And the kind of food violation you'll see in 80-year-old patients with Alzheimer's is, like, hoarding cookies, when they're supposed to be on a pureed diet.
You're basically saying that a certain amount of freedom is actually more important, psychologically speaking, than safety? Exactly. With the cookies example - yes, there is the very real possibility that they might choke. But if these cookies are so important and meaningful to them, then, honestly, just let them eat the cookies.
Because if you don't have that freedom, you feel like you're in a prison. People have to be allowed to make choices. And you can argue with them about choices - it's just like in your own home, where you argue with your parents, or they argue with you about what you both think are good choices and bad choices.
But that's part of being alive. People have priorities besides just surviving and being safe, and we as a society have to recognize that.
So for those of us who aren't directors of nursing homes - how do we move toward making the end of our lives, and our loved ones' lives, better, and more filled with meaning and purpose?
We need to learn what people's priorities are, and the most reliable way to do this is to simply ask them. But we don't ask.
Less than a third of cancer patients in one study - terminal cancer patients, who lived on just four months after the study started - less than a third had any discussion with their clinicians about what their priorities and goals were for the end of life. And those patients who did have that discussion were more likely to have stopped aggressive therapy sooner. They had less suffering at the end of life. They entered hospice sooner. Their family members had less depression and post-traumatic-stress-disorder symptoms than the others at six months after the patient died. And then the striking thing in multiple studies now is the groups that had those conversations often ended up using less aggressive care to the end; they not only did not shorten their lives, they tended to live longer.
It's a hard conversation to have. But there's actually an incredibly simple way to broach the subject. It just needs these simple words: I'm worried. You're saying, I'm worried about what I'm seeing going on. It doesn't say, I'm certain you're going to die next week, because we're not certain exactly what's going to happen. But it puts the worry on the table, and then it also says that we can talk about those best cases and worst cases here.
You've been talking about the words that a medical professional can use to talk about dying. But do you think those two words - I'm worried - would also help a layperson broach this subject with an aging or ailing loved one?
I think so - in fact, I used them when I was talking to my dad toward the end of his life, when he was diagnosed with a disease that would cause him to gradually become quadriplegic.
We put off that talk for a while, because we didn't know the end would come so soon - we kept thinking it would be later. But then he began having a series of falls. At one point, he fell in the middle of the night, and my mom couldn't get him off the ground. And then, with her arthritis, she ended up on the floor next to him, and neither of them could get up! And so they called me up, like, Help. And so we called a friend who helped them get up, and meanwhile I immediately flew out to see them. And by the time I arrived, he was feeling better and he was like, It's probably all right. It was just this one thing.
And being able to just say those words, I'm worried - I wasn't saying I know for certain that we're going to be in trouble here. And maybe this really was just a one-time thing. But I was really worried, and being able to say so let us open the door to the next set of questions - like, What do we do if this happens again? So these words let us walk down that road in the conversation.
And from there, you can start to arrive at answering this question that's at the heart of your book: What becomes important to you if your time becomes short?
I think my favorite answer to that question was 'chocolate ice cream and football.'
Yes! This was an older man who told his daughter, when she asked him this line of questions, As long as I can eat chocolate ice cream and watch football on television, that'll be good enough for me.
When I had this conversation with my father, I mentioned that, and he said, No way that's good enough for me. He's a very social creature, and he wanted to be able to interact with people. So he needed to be able to talk and have his brain together enough to have that kind of interaction. And he also wanted to know that he was going to be able to keep making some kind of contribution to the world. You know, he was a doctor and he liked helping people, and he wanted to know that there was some way for him to keep up doing that right up to the end. And so that's what we tried to make sure, as treatment went along and as his condition worsened, that we were prioritizing the options that would not sacrifice his ability to see people, connect with them socially. Even on hospice, he continued to have dinner parties.
As I was reading this book, I kept asking myself, how would I answer that question - what would matter to me if my time became short? So I'm curious: Have you answered that for yourself?
Yeah. My wife and I have talked about this, and we have very different opinions. For me, if I'm reduced to a brain in a jar that can still be connected to have some kind of sensory input and I can communicate with others stills - you know, if I'm still able to talk and connect and get a sense of what's going on in the world - that's good enough for me. However, if my body is still working, but my brain is not - if I'm not who I am anymore, and I can't interact that way anymore - then just let me go.
Now my wife's answer is, Hey, if I look happy, that is good enough for me. She said, If you see me and as long as I look like I'm happy I may not be who, I was I may not even recognize you anymore, but hey, if I look happy, that's good enough. Keep me going.
Atul Gawande's 'Being Mortal: Medicine and What Matters in the End' introduces its author as a myopically confident medical school student whose seminar in doctor-patient interaction spent an hour on Tolstoy's novella 'The Death of Ivan Ilyich.'
As a young man, he was not ready to understand the title character's loneliness, suffering and desire to be pitied. He saw medical compassion as a given and Ivan Ilyich's condition as something modern medicine could probably cure. He and his fellow students cared about acquiring knowledge and competence. They did not see mortality as part of the medical equation.
Now a surgeon (and rightfully popular author) in his 40s, Dr. Gawande sees why that story was part of his training. 'I never expected that among the most meaningful experiences I'd have as a doctor - and, really, as a human being - would come from helping others deal with what medicine cannot do as well as what it can,' he writes.
'Being Mortal' uses a clear, illuminating style to describe the medical facts and cases that have brought him to that understanding. He begins with an anecdote that illustrates how wrong doctors can be if they let their hubris and fear of straight talk meld with a patient's blind determination to fight on, no matter what. 'Don't you give up on me,' demands a man with cancer, though the surgery he wants cannot possibly cure him. 'He was pursuing little more than a fantasy at the risk of a prolonged and terrible death - which was precisely what he got,' Dr. Gawande writes.
Such things happen because modern death-delaying techniques are relatively new in medicine. Which patients have long-term life-threatening conditions and which are really at death's door? In what Dr. Gawande calls 'an era in which the relationship between patient and doctor is increasingly miscast in retail terms,' how easy is it for doctors - trained to solve problems and succeed - to acknowledge that there's no cure to be had? How many doctors, used to telling their patients how to live, are ready to talk to them about how to die?
Dr. Gawande's early description of how the body decays with age is nothing if not sobering. It's one thing to know that arteries harden; it's another to learn that he, as a surgeon, has encountered aortas so calcified that they crunch. And so it goes with this book's thorough litany of body parts, from the news that an elderly person's shrinking brain can actually be knocked around inside his or her skull to the way a tooth can determine a person's age, give or take five years. Eat and exercise however you want, tell everyone how old your grandparents lived to be: According to 'Being Mortal,' none of these factors do much to slow the march of time.
So a lot of the book is devoted to subjects generally unmentionable, like geriatrics. 'When the prevailing fantasy is that we can be ageless, the geriatrician's uncomfortable demand is that we accept we are not,' he writes. And the number of doctors willing to become geriatricians is shrinking, partly because the field is not as lucrative as, say, plastic surgery, and partly because it provides so little instant satisfaction, and requires such work as a detailed, lengthy examination of callused old feet.
'Mainstream doctors are turned off by geriatrics, and that's because they do not have the faculties to cope with the Old Crock,' says Dr. Felix Silverstone, a specialist in the field. To summarize: This hypothetical Old Crock is deaf and forgetful, can't see, has trouble understanding what the doctor says and has no one chief complaint; he has 15 of them. He has high blood pressure, diabetes and arthritis. 'There's nothing glamorous about taking care of any of those things.'
But patients who receive good geriatric care stay happier and healthier, just as old people who can remain at home and aren't forced into nursing homes are better able to enjoy their lives. This book makes a thorough inquiry into how the idea of the assisted-living facility arose as a supposed improvement on regimented nursing homes but has often become a disheartening place for independent-minded people to have to go. The all-important quality-of-life issue that is used to market such places, Dr. Gawande maintains, is directed more toward the people planning to leave Mom then than toward Mom herself. But he sees a lot of hope in the group living concept, if it is overseen with the residents' happiness in mind.
The toughest stories in the book are, of course, the terminal ones. And Dr. Gawande gives an agonizing account of how his own father, also a surgeon, gradually lost control of his body, even while understanding exactly what was happening to him. He writes of his family's ordeal in facing the reality of this downhill slide, and of his own particular helplessness as a doctor. He captures the inevitable physical intimacy that comes with death, which is perhaps the strangest shock to a culture that has used hospitals and nursing facilities to isolate the dying from the healthy in ways that earlier generations never could.
Last and hardly least, Dr. Gawande describes some of his toughest cases, including that of a pregnant 34-year-old with terminal cancer (a tough fighter facing a heartbreaking situation) and a woman whose abdominal troubles prove far more awful than anything the doctor anticipated. By then, he has made a subtle but all-important change in how he answers patients' terrified questions. Asked 'Am I going to die?' his answer could be: 'No, no, no. Of course not.' But he learns to say, 'I am worried.' That's a way of being honest, serious and empathetic, showing he is wholly on the patient's side. It won't work miracles. But it's the best a doctor can do.
Once as a medical student I was deputed by a hospital consultant to tell a family that their loved one was dying of lung cancer. The imparting of such information was not regarded by him as very important, indeed he thought it almost as a distraction from the serious business of curative medicine.
Without any guidance as to how to do it, I told the family in a very straightforward way, not because of any commitment to honesty but because I could think of no other. To my horror, one of the relatives was very hard of hearing, so I had to raise my voice to so high a volume that my voice echoed round the ward. It would have been comical if it had not been so appalling.
In any case, the dying patient might have guessed that he was in a bad way because, when the medical notes were put out at the end of the bed before the consultant's ward round, those that contained a diagnosis of cancer were left out. In other words, if you were lying in bed and the notes failed to appear at the end of your bed, you knew the diagnosis was bad, despite the doctor's assurance that it was 'just a little ulcer' in your lung or your bowel.
Things have improved since those days, though not in all respects. Our technological capacity to keep people alive, but barely, and to hold out the hope of miracle cures in the face of the most obvious approach of death, has meant that very large numbers of people have been horribly tortured, though with the best of intentions, in the last days, weeks and months of their earthly existence, all to no purpose and often at extravagant expense. Perhaps the long-drawn out death of Generalissimo Franco in Spain, in 1975, first brought this problem to world attention: a problem that the most fascinating part of the latest book by Atul Gawande, a surgeon at Harvard with great literary gifts, seeks to address. And he knows whereof he speaks, for he confronts it in practice every day.
He tells in horrifying detail tales of people with fatal cancers who have been subjected to regimes of drugs, vastly expensive, that offer at best a few extra weeks of life at the cost of debilitating and even hideous side-effects, and which may even in some cases actually shorten life by comparison with simpler regimes that take patients' own priorities more into account.
Part of the problem is that medicine, despite its great strides, is still an inexact science. Prognosis remains surprisingly approximate, even in the last days of life. Surprising cures do sometimes occur, and not just doctors but patients hang on to their possibility. Dr Gawande tells the story of his father's final illness from a tumour in his spine, when he thought that his father would not last the hour. He survived for four days, during one or two of which he ate with surprising appetite and was able to speak coherently. Nature could fool even as experienced a doctor as he.
Another problem is that medicine continues to see the lengthening rather than the improvement of life as its principal goal, one that is easily measured and believed by doctors always to be desirable in itself. This might have been appropriate when the life expectancy of the population was a mere half of what it is now and the slightest infection or accident could easily prove fatal; but the days of revolutionary advance such as anaesthesia, antiseptic (and then aseptic) surgery, mass immunisation and antibiotics, seem to be over.
Nowadays, medical advance is mostly incremental rather than by great leaps. If you read the medical journals you will see that immense clinical trials of new drugs, involving thousands of patients, are often undertaken to prove them marginally superior to the old; a few weeks or months of extra life are bought at immense cost, financial and other. By comparison, it needed only seven patients with a condition called sub-acute bacterial endocarditis treated with penicillin to show that the drug worked.
Furthermore, doctors are embarrassed by death and the dying. Where the prolongation of life is the aim, death is defeat, and no one likes to admit defeat any more than he likes breaking bad news. Dr Gawande quotes a study showing that most doctors overestimate the time left to patients, even when they are specialists in frequently fatal diseases.
Is there a solution, simple or otherwise, that will allow people to take advantage of modern medicine yet not be subjected to the indignities and horrors of technologised death? The author proposes that doctors take more notice of what is important to patients rather than assuming that to live an extra few days or weeks at all costs is what they want. Many patients fear dependence more than death (my mother certainly did), and what reduces dependence may accelerate death. A reason for living is more important than living itself; and this can sometimes be surprisingly easy to provide the old who are in decline. For example, pets give a sense of purpose: a dog is the best antidepressant known to man. Dr Gawande quotes a trial in which the arrival of pets improved not only the mood, but the cognition and longevity of elderly patients.
Dr Gawande is no utopian who believes that the pain and sorrow of decline and death can be eliminated entirely if only we adopt the right attitudes. Occasionally he overstates a case, spins out a story or uses words in a way that jolted me. I cannot think of children at kindergarten as 'students', for example; they are not even pupils. To call them students is to impoverish the language, for what word do we then use for student in the real sense? It is hardly surprising that children are treated as adults and adults as children, and that precocity followed by arrested development should be so common.
But for the most part Dr Gawande writes very well, his book is deeply humane and I learned much from it. If only I had read it all those years ago when I was deputed to tell the relatives that their loved one was dying.
It began with a tingle in the surgeon's fingers and a pain in his neck. A couple of years later, he learned he had a tumor inside his spinal cord. That was when the difficult choices began. Should he have it removed right away in a risky operation, as his doctor recommended? Or should he take time to consider this question: At what point would the expanding tumor cause debility bad enough to justify the risk of greater debility or even death in trying to fight it?
The surgeon in the story is the father of Atul Gawande, who is also a surgeon as well as a writer for The New Yorker. His new book, 'Being Mortal,' is a personal meditation on how we can better live with age-related frailty, serious illness and approaching death.
It is also a call for a change in the philosophy of health care. Gawande writes that members of the medical profession, himself included, have been wrong about what their job is. Rather than ensuring health and survival, it is 'to enable well-being.'
If that sounds vague, Gawande has plenty of engaging and nuanced stories to leave the reader with a good sense of what he means. In a society that values independence, what happens when that is no longer possible? We need to reckon with the reality of the body's eventual decline, he argues, think about what matters most to us, and adapt our society and medical profession to help people achieve that.
Gawande writes: 'For many, such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are already being sacrificed - victims of our refusal to accept the inexorability of our life cycle?'
Medical professionals are the ones who are largely in control of how we spend our 'waning days,' he writes, yet they are focused on disease, not on living. 'Medicine has been slow to confront the very changes that it has been responsible for - or to apply the knowledge we have about how to make old age better.' The experts quoted here argue that doctors should not only treat disease but also concern themselves with people's functional abilities, and that most medical trainees should learn about geriatrics.
In the first part of the book, Gawande explores different models of senior living - from multigenerational households to newfangled nursing homes. In the latter part, which is shorter, he shifts somewhat abruptly to end-of-life medicine, promoting hospice as a model of care. The two sections are anchored by two of Gawande's most memorable New Yorker essays, which make up two of the book's eight chapters - 'Things Fall Apart' and 'Letting Go.' Around them are rich stories from his own family.
'Being Mortal' is a valuable contribution to the growing literature on aging, death and dying. It contains unsparing descriptions of bodily aging and the way it often takes us by surprise. Gawande is a gifted storyteller, and there are some stirring, even tear-inducing passages here. The writing can be evocative. In a home for the aged in a New Delhi slum, mattresses are 'pushed up against one another like a large sheet of postage stamps.'
The stories give a dignified voice to older people in the process of losing their independence. We see the world from their perspective, not just those of their physicians and worried family members.
One of his most provocative arguments is that hard-won health and safety reporting requirements for elder care facilities might satisfy family members, but ignore what really matters to the residents in question. Despite the popularity of the term assisted living, 'we have no good metrics for a place's success in assisting people to live,' Gawande argues. A life of safety isn't the life most people really want for themselves.
Gawande searches for models of care that promote frail people's ability to live a meaningful life, by imbuing them with cause or promoting their ability 'to keep shaping the story of their life in the world.' The reader may wonder if everyone in these innovative senior communities is as satisfied as the individuals Gawande profiles. Given that there is little data to back up the anecdotes, it's hard to know if there are real solutions here. There is also relatively little exploration of the options for people with dementia.
On the other hand, if the various ideas Gawande describes work for some residents - bringing in cats and dogs and kids to help re-instill purpose; splitting up floors into smaller units that are more homelike; making aging-in-place more possible - then so much the better. Hallelujah, really.
In the last part of the book, Gawande argues against the treatment-at-all-costs model that once prevailed in medicine. 'People with serious illness have priorities besides simply prolonging their lives,' he writes. 'If your problem is fixable, we know just what to do. But if it's not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity and extraordinary suffering.'
Some of the ideas, however, strain credibility, such as that an increase in people dying in the home in America beginning in the 1990s might reflect a stage when a country's income climbs to the highest levels (the single article Gawande includes as reference does not back the theory, and median income in the 1990s was not much lower than it is now in inflation-adjusted dollars). In the same section, he makes a sweeping statement about the proportion of home deaths in 'some African cities' based on a study that involved only two cities in Botswana.
On the one hand, Gawande is swayed by the paleontologist Stephen Jay Gould's essay 'The Median Isn't the Message.' After receiving a cancer diagnosis with a median survival of only eight months, Gould observed that some patients survived well beyond the eight month median. He became one of them, living some 20 years after experimental treatment, and dying from an unrelated cancer.
Gawande writes: '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.' And, he argues, our medical culture does just that.
One of Gawande's most important observations is that reassessment is crucial. 'Arriving at an acceptance of one's mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.'
Gawande offers a succinct discussion of euthanasia at the end of the book. 'The debate is about what mistakes we fear most - the mistake of prolonging suffering or the mistake of shortening valued life.' He critiques end-of-life policy in the Netherlands, calling the fact that so many Dutch people seek assisted suicide 'a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end.' He questions whether the Dutch have been slow to develop palliative care programs because 'their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.'
Gawande uses his father's powerful story to explore the concept of shared decision-making in medicine - the idea that the ideal modern doctor should be neither paternalistic nor informative but rather interpretive, helping patients determine their priorities and achieve them. He shares lessons he learned from a palliative care doctor who advises him to 'ask, tell, ask' during a difficult discussion about a patient's prognosis: Ask what patients want to hear, tell them and then ask what they understand.
Gawande identifies no perfect solutions to the problems inherent in bodily decline. He is just asking us to commit ourselves to creating better options and making choices with the goal of a purposeful life in mind.
WOULD life still be worth living if you could watch football on television and eat chocolate ice-cream, but not walk, feed yourself or use the bathroom unaided? How much pain would you accept for the chance of a few extra weeks? And how would you use the time you had left if you knew that no such chance remained?
For most people in the developed world, conversations about such topics never take place. Young people remark in passing that they would rather be dead than go into a nursing home; that they do not want to die in hospital; that they do not want a drawn-out, agonising end. The closer that end is, the less it is talked about. The result is that hard choices are made without an understanding of their consequences. More and more people spend their last hours exactly as they wished not to: hooked up to machines under fluorescent lights, surrounded by strangers.
As death approaches, horizons naturally close in. Young people in peacetime say they want to travel, learn and experience things they do not know and meet new people. The elderly and those who are reminded of their mortality by war or civil upheaval want to be in familiar places and with those they love. But many people close to death are cheated of the chance to shift their focus to the near future. They find themselves admitted to hospital for what they think is a treatment that can fix them, only to be stuck there till death.
In this eloquent, moving book Atul Gawande, a general surgeon and author of other thoughtful works on the doctor's trade, explains how and why modern medicine has turned the end of life into something so horrible. 'Over and over, we in medicine inflict deep gouges at the end of people's lives and then stand oblivious to the harm done,' he says. The book's focus is America, which spends vast sums on dubious end-of-life treatments. But other rich countries (and increasingly those that are not rich) are experiencing many of the same trends.
Rightly, doctors have abandoned the paternalism that used to lead them to conceal terminal prognoses. But they have failed to find a voice and the courage to guide their patients through the various treatments between which they are supposed to choose, too often hiding behind 'informed consent'. That too few geriatric specialists are being trained has not helped; in America only 300 graduate every year. Meanwhile, for those people who live long enough to become frail before dying, a nursing home that puts safety before anything that might make their final days worth living awaits. 'Our most cruel failure in how we treat the sick and the aged', says Dr Gawande, 'is the failure to recognise that they have priorities beyond merely being safe and living longer.'
Many passages in Being Mortal will bring a lump to the throat, but Dr Gawande also visits places offering a better way to manage life’s end: a Jewish retirement community on the same site as a school where the residents can act as tutors; a nursing home filled with pets for patients to care for; a sheltered-housing programme that commits itself to supporting all residents, no matter how complex their needs. And Dr Gawande himself learns to have better conversations with the sick and dying. Trial and error, and guidance from enlightened colleagues, some within the hospice movement, have taught him a useful opening gambit: 'I'm worried.' These words signal that the latest procedure is neither a sure thing nor a cure, and start a discussion about priorities and outcomes, and how qualified hope should be.
Many people fear that a doctor who does not try everything possible has abandoned his patients, and they will die earlier as a result. Surprisingly, however, the try-everything approach appears not even to offer a longer life. Multiple studies have shown that patients entering hospice care, which usually means abandoning attempts at a cure, live at least as long as those receiving traditional care. A startling study in 2010 found that patients with advanced lung cancer who saw a specialist in palliative care as well as receiving the usual oncological treatment stopped chemotherapy sooner, entered a hospice earlier, suffered less - and lived 25% longer than comparable patients who received only the standard care. 'If end-of-life discussions were an experimental drug, the FDA [an American regulatory body] would approve it,' says Dr Gawande. In life, as in all stories, he writes, 'endings matter'.
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