For most of us, death will not come suddenly. Instead, the modern way of dying often extends over weeks, months, and increasingly years, with its exact starting point and multiple causes often hard to identify even after the fact, and with many rallies and relapses along the way to journey’s end.
Two years before their death, fully 28 percent of Americans are already suffering from one or more serious disabilities that typically require long-term nursing home care or extensive caregiving by family members. By age eighty-five, 40 percent of us are afflicted with textbook dementia. Within one month before the end, well more than half of us will have become too feeble to perform normal activities of daily living, such as dressing or using the toilet without assistance.
by Atul Gawande
Macmillan, 330 pp.
By that point, many of us will have suffered through a cascading series of setbacks—falls compounded by strokes, compounded by metastasizing tumors, compounded by failing body organs—that will cause us to be shunted in and out of intensive care units. There, respirators, catheters, defibrillators, dialysis machines, artificial feeding tubes, and other high-tech paraphernalia marginally prolong still further the process, and often the agony, of dying. No one wants to pass this way, and there is no good reason why so many of us have to, yet forces beyond our control often conspire against our wishes.
The message of Atul Gawande’s masterful new book, Being Mortal: Medicine and What Matters in the End, is that we need to get over our denial and confront the needless, massive harm we do to each other, including our future selves, by not facing up to the realities of modern mortality. “Our reluctance to honestly examine the experience of aging and dying has increased the harm and suffering we inflict on people,” writes Gawande, “and denied them the basic comforts they most need.”
A more qualified messenger on this subject would be hard to find. Gawande’s credentials include not only being a practicing surgeon at Brigham and Women’s Hospital in Boston, which has given him vast experience with end-of-life issues from a doctor’s point of view. He is also one of the most talented, accomplished, nonfiction writers of his generation, with credits that include having written ground-breaking articles as a staff writer for the New Yorker, plus three best-selling books, exposing and explaining in chilling detail the breakdown of America’s health care delivery system.
Gawande’s effectiveness as a writer comes from his rare ability to combine both cutting-edge policy analysis with a novelist’s flair for bringing those issues to life through gripping anecdotes about the travails of ordinary people, including, in this book, fellow doctors, patients, and his own dying family members. Gawande’s storytelling, which includes harrowing accounts of his mother-in-law’s and own father’s prolonged decline and death, makes for a powerful reading experience, albeit one that for most of us, on most days, we might well prefer to avoid.
One key insight that Gawande offers is how much doctors themselves are unnerved by death. “When I saw my first deaths, I was too guarded to cry,” he says of his early experience as a doctor. “But I dreamt about them. I had recurring nightmares in which I’d find my patients’ corpses in my house—in my own bed.” Death particularly unsettles doctors, says Gawande, because it threatens a core part of their identity: their self-image of being competent above all else. “For a clinician,” he writes, “nothing is more threatening to who you think you are than a patient with a problem you cannot solve.”
Doctors today know how to treat, if not cure, many specific conditions, such as colon cancer, high blood pressure, or an arthritic knee. But, writes Gawande, “give us an elderly woman with high blood pressure, arthritic knees, and various other ailments besides—an elderly woman at risk of losing the life she enjoys—and we hardly know what to do and often only make matters worse.”
Most doctors have not received any training that specifically prepares them to treat the kind of patients who are overwhelmingly becoming the most common. These are people who, had they been born even a few decades before they actually were, would have likely died from childhood infections or midlife coronaries, but who under modern conditions have survived long enough to be afflicted by multiple chronic conditions such as cancer and Alzheimer’s disease.
“I learned about a lot of things in medical school, but mortality wasn’t one of them,” Gawande says. “Although I was given a dry, leathery corpse to dissect in my first term, that was solely a way to learn about human anatomy. Our textbooks had almost nothing on aging or frailty or dying.”
Today, even though the population of the United States is aging rapidly, the number of doctors specifically trained to deal with the problems of the elderly is declining nearly as fast. Between 1996 and 2010, for example, the number of certified geriatricians joining the medical profession has fallen by 25 percent, even as medical school graduates continue to surge into more lucrative specialties such as plastic surgery and radiology.
Gawande shows just how severe are the real-world consequences of such a misallocation of medical talent and resources. He describes, for example, a study conducted by researchers at the University of Minnesota of 568 men and women over the age of seventy who were living independently but who were at high risk of becoming disabled by chronic disease, a recent illness, or declining cognitive faculties.
Researchers assigned half of this group to teams of geriatric nurses and doctors who were specifically trained in the challenges of managing the care of elderly patients. These teams met with patients regularly, provided counseling and health education, adjusted medications when necessary, and assisted with finding community services and with drawing up advanced directives, while coordinating care with any specialists required. The remaining members continued to be treated by their usual physicians.
The results after eighteen months were that the patients who had been seen by the geriatric teams were a quarter less likely to become disabled and half as likely to develop depression. They were also 40 percent less likely to need home health services.
To help us see just how stunning these results are, Gawande provides a thought experiment. Suppose, he asks, that scientists had come up with a device called an “automatic defrailer.” This device would not extend your life expectancy, but it would radically reduce your chances of your ever winding up in a nursing home or suffering miserable depression in old age.
“We wouldn’t care if doctors had to open up your chest and plug the thing into your heart,” Gawande observes. “We’d have pink-ribbon campaigns to get one for every person over 75. Congress would be holding hearings demanding to know why four-year-olds couldn’t get them installed. Medical students would be jockeying to become the ‘defrailulation’ specialists, and Wall Street would be bidding up company stock prices.”
But in the world as we find it, the experiment was shut down because it cost more money than Medicare would reimburse. This illustrates a near-universal axiom of American health care: that almost no actual improvement in care goes unpunished because most health care providers sacrifice income when they succeed in improving their patients’ well-being. It also illustrates the bizarre mental frame we apply to effective treatments that are not high tech. “No one insists that a $25,000 pacemaker or coronary-artery stent save money for insurers,” Gawande observes. “It just has to maybe do some people some good. Meanwhile, the 20-plus members of the proven geriatrics team at the University of Minnesota had to find new jobs.”
Given that most of the money to be made in health care goes to specialists treating one body part at a time with high-tech interventions, and given that medical education and professional culture continues to avoid and discount the realities of aging and death, finding doctors who know how to navigate a patient through end-of-life issues is exceedingly difficult. Yet the cost of not finding one, whether for yourself or for an aging loved one, is often exceedingly high.
“In a war that you cannot win, you don’t want a general who fights to the point of total annihilation,” Gawande observes in a telling analogy. “You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender when it can’t, someone who understands the damage is greatest if all you do is battle to the bitter end.”
According to a recent white paper issued by the Institute of Medicine entitled “Dying in America,” a curious feature of American life today is that members of minority groups, particularly African Americans, are significantly more likely than the general population to receive aggressive treatments at the end of life, such as mechanical ventilation, tube feeding, and cardiopulmonary resuscitation. Evidently, managing to avoid such overtreatment has become yet another matter of racial or class privilege.
Underscoring that conclusion is another landmark study cited by Gawande. It compared a large group of late-stage lung cancer patients, half of whom received only palliative care to relieve their pain and maximize their comfort, and half of whom continued with the usual cancer treatments. Those receiving palliative care not only enjoyed higher quality of life, they actually lived 25 percent longer. “In other words,” Gawande notes, “our decision-making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”
Yet Gawande by no means puts all the blame on doctors; he also has much to say about patients, and also, notably, about their loved ones, who often wind up making matters worse by failing to come to grips with end-of-life realities. In one passage I found particularly chilling, he tells of a young man dying of cancer who opted for continuing chemotherapy because his father could not accept that he was terminally ill. “His father had shown him reports of cures on the Internet. He confided how badly his father was taking the news. No patient wants to cause his family pain.” According to one oncologist Gawande interviewed, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.
One of the major contributions of this book is that Gawande manages to reframe end-of-life issues outside the normal, puerile terms of debate. He does not concentrate on the financial costs of heroic, high-tech treatments that only marginally extend life expectancy, though those costs are extensive. Nor does he engage directly with those calling for, or decrying, various forms of “rationing.” Rather, Gawande quite rightly shows how for the vast majority of us the real issue is entirely different: just how—in the face of a health care delivery system acculturated to and profiting from the overtreatment of its sickest, most vulnerable patients—do we and our loved ones get through to the end of life while avoiding painful, expensive, futile care we don’t want.
There remain deeper issues with which he barely grapples, such as how to distinguish coherently in all cases between suicide and a right to decline treatments that might keep us alive but with an unacceptable loss of what makes life worth living. But Gawande makes clear that we cannot use the difficulty of those discussions as an excuse for continuing to avoid dealing with a subject that increasingly threatens not only our individual lives and the lives of those we hold most dear, but the quality of American life as a whole.