By DON HERZOG
Review of Being Mortal: Medicine and What Matters in the End, by Atul Gawande
Metropolitan Books, 2014
You’re getting older. I’m not sure what tone Atul Gawande means to adopt – reproachful? acerbic? matter-of-fact? – but his litany is relentless. Your tooth enamel is thinning: peroxide may delay the cosmetic symptoms, but your teeth will yellow. If they stay in your mouth, that is. Your jaw muscles are getting weaker and so is your jawbone, so you’ll eat softer foods. That means more carbohydrates, which in turn means more tooth decay. “By the age of sixty, people in an industrialized country like the United States have lost, on average, a third of their teeth. After eighty-five, almost 40 percent have no teeth at all.”
Preening yourself on your relatively good record? Yeah, I had that fatuous impulse, too. But Gawande is just warming up. “Blood vessels, joints, the muscle and valves of the heart, and even the lungs pick up substantial deposits of calcium and turn stiff.” Welcome to high blood pressure, to losing your breath as you climb the stairs, and more. Forget cataracts, as someday you’ll wish you could: even without them, “the amount of light reaching the retina of a healthy sixty-year-old is one-third that of a twenty-year-old.” “Our bowels slow down. Our glands stop functioning. Even our brains shrink….” They don’t just shrink, they work less well. Memory fades, “processing speeds start decreasing well before age forty,” and “40 percent of us have textbook dementia” by age 85.
If you’re still relatively young, face it: that is what you’re looking forward to. As I’ve insisted for some time – some of my closest friends died young – there’s only one way not to age and it sucks. In some sense, we all know the dreary fact that our bodies give way, if not the exact details about enamel and the rest. But we also magically keep that fact at bay, even as we scoff that teenagers imagine that they’re immortal. We imagine – this may be especially alluring to us aging boomers, but I suspect plenty of others succumb – that we will live long and basically healthy lives and then more or less quickly die. We’ll require medical care along the way, but our doctors – smart as hell, fiendishly hardworking, with increasingly sophisticated medical knowledge, drugs, and technology at their command – will get us up and running again.
You don’t have to suffer from serious disability or chronic disease to realize that this script is a cheery fantasy, increasingly at odds with the way many of us live. And die. Set aside the really poor and the really lucky. Many of us can look forward to years of melancholy and majestic decline, with fitful little bursts of recovery and partially regained functioning, until we die. But doesn’t medicine make progress? You bet: that’s precisely why more of us can look forward to more years of falling apart.
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By now you might have received one of our society’s more trenchant reminders that, hey guess what, you really are going to die: you might have been ushered into a hospital room where someone you love, breathing stertorously – or, maybe worse, oh so slowly and serenely – is hooked up with cuffs, IV tubes, electrodes, you name it, to an imposing bank of weird machines. Digital displays flicker, devices beep and click and hum, nurses glide in and out. Economists wring their hands over how fabulously expensive end-of-life care is. Wouldn’t it be more efficient, they demand, to shift many of the resources we expend at the end to enhancing care earlier in life, where we’d get much more bang for the buck?
Gawande is terribly interested in end-of-life care, but social cost is barely on his radar. You’ll misread his book if you think that these economic concerns are the real stakes and if you get impatient with him for dwelling on what you might dismiss as trivial matters. But his perspective isn’t that of the shadowy figure, ominous or not, who we sometimes call the social planner. It’s that of an individual doctor caring for individual patients – and fretting we’re not doing well. And so before he even begins to consider heroic medical interventions in the very last stages of life, he spends dozens and dozens of pages pondering assisted living facilities.
When they’re bad – and often, he thinks, they are grotesquely bad – they are arranged for methodical bureaucratic routine. Patients will eat at these times, have meds administered at those, will go to sleep at this time, wake up at that. You can think of this routine as cruel indifference or rationalize it as cost-saving. Maybe that’s right. But also in the mix is an image of medical care: do what it takes to keep these ailing bodies running.
Keren Brown Wilson’s mother, a stroke victim, balked at one such facility. “Take me home,” she pleaded; “Get me out of here.” Gawande reports on Wilson’s later innovations. The tenants – not patients – of Portland’s Park Place “had private apartments with a full bath, kitchen, and a front door that locked (a touch many found particularly hard to imagine). They were allowed to have pets and to choose their own carpeting and furniture. They were given control over temperature settings, food, who came into their home and when.” More control than that: “if they wanted not to take certain medications that made them feel groggy; if they wanted to eat pizza and M&M’s despite swallowing problems and no teeth and a doctor who’d said they should eat only pureed goop – well, they could.”
Gawande reports too on Bill Thomas’s innovations, introduced in response to listless despair in upstate New York’s Chase Memorial Nursing Home. Missing, Chase thought, “was life itself,” even in the presence of all those bodies dutifully inhaling and exhaling, ingesting and excreting. So he proposed bringing in plants, dogs, cats, parakeets, plenty of visiting children. Other staff hesitated: no way, they figured, that state agencies would grant all the waivers needed for this loopy fantasy. But Thomas prevailed. Picture the slapstick comedy: a hundred parakeets got dropped off before the birdcages had been delivered. “The driver … released them into the beauty salon on the ground floor, shut the door, and left. The cages arrived later that day, but in flat boxes, unassembled.” The residents guffawed – and pitched in to assemble the cages, line them with newspaper, catch the birds. Rabbits and hens followed, an after-school childcare program, too.
Thomas detailed the astonishing effects. “People who had been completely withdrawn and nonambulatory started coming to the nurses’ station and saying, ‘I’ll take the dog for a walk.’” And – get this – the patients took fewer drugs, especially fewer “psychotropic drugs for agitation.” (Some disturbed and disturbing symptoms are doubtless caused by those shrinking brains and their pathologies. But some are a response to living in a socially sterile setting.) The death rate fell. In an experiment in a Connecticut nursing home, Gawande adds, researchers divided patients into two groups. Patients in one group got a plant to water and a lecture on taking responsibility for their lives. Patients in the other had plants watered for them and listened to a lecture on how staff were responsible for their well-being. Eighteen months later, the first group “proved more active and alert and appeared to live longer.”
So it’s not just that the mindless bureaucratic routines advance patients’ health at the cost of robbing them of autonomy, happiness, engagement with life. It turns out the routines don’t even serve patients’ health. If you let an ailing elderly patient lock her door, you might delay a nurse’s access in an emergency, and that might be a catastrophe. And I suppose parakeets can spread infections, especially when sick tenants are cleaning their birdcages; and anyone who’s brought up children know that one of their jobs is to ferry around microbes, so they must have been ferrying microbes into Chase Memorial, too. But it turns out those risks are well worth taking. That there’s no tradeoff here between quality of life and life itself might seem too good to be true. It might be true anyway.
By the time Gawande turns to end-of-life issues, the reader is primed to think concretely about quality of life. Not QALYs, the quantitative measure supposed to rationalize precarious and tricky judgments about the attractiveness of various healthcare interventions. I don’t know if it’s out of contempt, though I kinda hope it is, but anyway Gawande doesn’t even mention them. Not the bloated share of GNP we spend on healthcare, the lopsided bit of it we spend on the closing weeks or months of people’s lives. Gawande wants to suggest that our feverish campaign to do more or less whatever it takes to keep patients’ bodies chugging along is profoundly misguided.
Gawande insists instead that we stop and learn what patients want. Not by having them write out living wills in advance, with a series of answers to often unhelpfully abstract questions. Rather by having gutwrenching conversations with them about their illnesses, their prognoses, the upsides and downsides of various possible courses of treatment. Their answers of course will vary. One seventy-four-year-old emeritus professor was looking at a 20% chance of becoming a quadriplegic if doctors tried to remove a growth in his spinal cord. His daughter talked to him about the options. “Well,” he said, “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.” After surgery, he developed bleeding in his spinal cord. “The bleeding had already made him nearly quadriplegic, and he would remain severely disabled for many months and likely forever.” But if they didn’t stop the bleeding, he would die. His daughter asked the surgeons if he’d be able to eat chocolate ice cream and watch football on TV. They said yes; she okayed the surgery.
There’s a facile frame to account for this: defer to the patient’s autonomy. If people want to live, do what you can; if they don’t, well, that’s their choice. This isn’t making cost-justified QALY calculations. And it’s got nothing to do with death panels, government-run or otherwise. Like all other plans to defer to patients’ wishes, it won’t help with cases where people are suddenly stricken and unconscious. And you might well fret that the week after you’ve been told you have stage IV cancer might not be the best time to make a sensible decision about what care you do and don’t want. But at his most tantalizing, Gawande is suggesting that there’s more here than autonomy.
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I think I see why Gawande is more or less silent about financial cost, why he ignores QALYs, why he doesn’t try to engage the perspective of a social planner. He is perfectly well aware of a social landscape: of hospitals, budgets, an institutional routine in which insurance companies pay for health care (or deny it) and primary care physicians refer patients to specialists, and so on. But again, he writes as a clinician, with a relentlessly individual focus. For him, that social landscape is one patient, one individual, after another. And he thinks we are not only running roughshod over their autonomy. He thinks we are not promoting their well-being.
But I’m puzzled by other absences. Nowhere does he mention the Hippocratic oath, with its repeated injunction on doctors to do no harm. Nowhere does he mention euthanasia. He isn’t consumed with the slippery distinction between killing and letting die, the notorious doctrine of double effect, the legal schemes of Oregon and the Netherlands, the struggles between Jack Kevorkian and his prosecutors.
But his stories sure do have a point. Here’s the crux: “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way.”
Is it good for you to be hooked up to all those machines? Well, that depends on what you want. Some will think, if I have a good shot at eating chocolate ice cream and watching TV when they release me, I’m game. Others will think, no, if I have to give up swimming, or if I won’t be able to listen to music any more, or I can’t sit on the dock and chat with my spouse, or – or whatever else, fill in the blank however you want to, and millions of people will fill in those blanks in millions of ways – then I don’t want that. They needn’t be thinking that they don’t want to put their loved ones through the emotional and financial stress of the additional medical care. Indeed their loved ones might be pushing them to keep trying, no matter what. They might be thinking, a life on those terms is not a life I would find good.
If we defer to those wishes, we’re not preferring patients’ autonomy to their welfare. That familiar contrast is confused, at least for this sort of thing. We’re allowing patients to fill in what their own welfare is. But then it becomes trivially easy to see how medical care can harm people. It can leave them with a life they have no interest in living – a life, indeed, that they have an interest in rejecting. We’re used to thinking that harm is, just a bit roughly, setback of interests. Connect the dots – that part is trivial – and you see something macabre. Using medicine to ensure survival, come what may, means harming patients. I don’t mean malpractice and I don’t mean iatrogenic disease. I mean medical care that does just what it’s supposed to, nudging your body back toward proper functioning or anyway averting or slowing its further decline.
Not all patients with perilous problems are harmed by medical care: again some will have interests in even heroic care, just as I suppose some tenants in assisted living facility will think it good for them to be wakened every four hours to get their meds, or to be fed whatever their doctors think they should eat, not what they want. And sure, even now doctors sometimes say, we can do nothing more. But maybe they should be saying that more often and sooner. Maybe: depending, again, on what particular patients say they want after those gutwrenching conversations.
So Gawande’s worry isn’t that we’re blowing the medical care budget on end-of-life care. It isn’t that we’re ignoring QALYs. It’s that our willy-nilly focus on physical health, survival, proper organ functioning, is sometimes bad for patients. Doctors may well think the Hippocratic oath requires them to do whatever they can for the grievously ailing. But that seems dead wrong.
DON HERZOG teaches law and political theory at the University of Michigan. He’s the author, most recently, of Household Politics: Conflict in Early Modern England, and he’s wrapping up a book on defaming the dead.