Reaper at Bay

Atul Gawande’s Being Mortal: Medicine and What Matters in the End is an eminently useful book. Contrary to the implication of his title, Gawande’s subject isn’t death—the dying aren’t dead, after all, they are living. Rather, his purpose is to help readers navigate the treacherous shoals of medical and caregiving choices that we or loved ones face as we grow old and when life draws to its end.

Gawande is a surgeon, but he is anything but clinical. With a distinctly human touch, he takes us through true-life experiences of his late father, friends, and patients, documenting the conundrums they faced coping with serious illnesses or age-caused decrepitude. His hope is that by seeing the good, bad, and ugly of others’ experiences, we will make better choices ourselves.

That’s a noble undertaking, but dangers lurk in these woods. A crass utilitarianism has infected modern bioethics and the practice of contemporary medicine. Under the so-called “quality of life” ethic, dependent, disabled, elderly, and dying patients may be denied optimal care in order to redistribute health resources to the young, fit, healthy, and productive—deemed to have a greater claim to care.

With cost containment becoming the new buzzword in medicine—particularly given the reasonable apprehension that the Affordable Care Act could lead to “death panels”—I worried that Gawande would recommend forcing the weakest and most vulnerable out of the lifeboat if they refused to jump themselves. Thankfully, I was wrong. Gawande’s approach is loving toward and deeply respectful of those facing the end of days. Indeed, he adamantly insists that the aged and dying are entitled to the best care reasonably obtainable—which sometimes isn’t raging against the dying of the light. Indeed, he convincingly demonstrates that foregoing last-ditch efforts such as the Hail Mary round of chemotherapy can sometimes be “almost Zen: you live longer when you stop trying to live longer.”

Not that there are hard and fast rules. The thick fog of uncertainty can obscure the best path forward—even for the most informed patients and caregivers. At such times, Gawande counsels, all we can do is exercise “prudent strength” on a path illuminated by human courage:

At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped…But even more daunting is the second kind of courage—the courage to act on the truth we find…One has to decide whether one’s fears or one’s hopes are what should matter most.

I found the author’s pointed lament about the decline of geriatrics—and its causes—particularly cogent. “We all like new medical gizmos and demand that policy makers ensure they are paid for,” he notes. “We want doctors who promise to fix things.”

But that isn’t what geriatricians do. Rather, they “bolster our resilience in old age, our capacity to weather what comes:”

It requires attention to the body and its alterations. It requires vigilance over nutrition, medication, and living situations. And it requires each of us to contemplate the unfixables in our life, the decline we will unavoidably face, in order to make the small necessary changes to reshape it. When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not.

Gawande seeks to overcome readers’ denial by projecting unsparing images of the continuing adjustments that will be required of those fortunate enough not to get hit by a truck or die suddenly from a heart attack. Having recently qualified for Medicare, I found his descriptions of progressive decline in old age particularly painful. I am, thanks be to God, still vital with nothing beyond sore knees about which to complain. But in ten short years—if I am lucky—I am statistically likely to be on some form of strong medication and unable to walk the 18 holes of golf that I now so enjoy. Not the worst fate, to be sure, but enough to give me pause. In twenty years, I may be unable to live independently. In thirty? If still alive, I am likely to be—take your pick—demented, incontinent, wheelchair dependent, and/or bedridden.

None of that makes me less valuable, Gawande says. But it does mean I should be making plans because the winds of life’s vicissitudes howl ever-more forcefully as we age. Wisdom! Knowing what I want—and don’t want—before the crisis will make it easier for me and my future caregivers to negotiate whatever may come.

The book also hit home for me in the here and now. As an only child, I am the primary caregiver for my 97-year-old mother who remains healthy, but increasingly frail and forgetful. We have faced difficult decisions together already, with more sure to come. I was encouraged that Gawande believes—like mom—that happiness sometimes matters more than safety and forcing bitterly unwanted interventions on a resisting oldster can be the wrong approach.

I was pleased also that Gawande supports changes in hospice that I believe are long overdue. Under current Medicare rules—followed by most private health insurers and Medicaid—those diagnosed with six months or less to live may opt for hospice. But as a condition of receiving hospice’s multidisciplinary approach—house calls by nurses and pain control specialists, as well as and social and spiritual support for patient and families—patients must in return forego all life-extending or curative interventions.

Forcing the dying to make that cruel choice enervates hope—contrary to the very purpose of hospice that offers the realistic prospect of avoiding pain, enjoying family and friends to the very end, and dying peacefully at home surrounded by those we love. As a direct consequence, many reject hospice until just a few days before death, which deprives them of its value and reduces hospice to what end-of-life expert, Dr. Ira Byock, denigrates as “brink-of-death care.”

This isn’t just a matter of compassion, but good public policy. As Gawande notes, a study conducted by Aetna Insurance permitting “concurrent care”—having access to both hospice and life-extending treatments—saw hospice participation rise from 26 to 70 percent. Moreover, many were so pleased with the hospice care they were receiving, they did not pursue painful last ditch efforts, visiting “the emergency room half as often” compared to control group in traditional hospice. More: Their admissions “into ICUs dropped by more than two-thirds. Overall costs fell by almost a quarter.”

It is a sign of the times that any book of this nature must grapple with the assisted suicide menace. Here, alas, Gawande deeply disappoints. After spending nearly 250 pages strongly advocating personalized and life-affirming care for the elderly and dying—and despite noting that a terminal diagnosis can be wrong (using the late Stephen Jay Gould’s first cancer that he survived as his example)—the author only spends a few short pages facilely surrendering to the very movement that undermines all he strives so laboriously in his book to construct.

Worse, clearly uncomfortable with the subject, he is uncharacteristically mushy and imprecise. For example, he wrongly claims that there is “a weak philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives, and giving them the right to stop the natural, internal processes that do so.” To the contrary: The Supreme Court of the United States ruled unanimously in 1997 that the distinction between allowing nature to take its course by refusing life-extending treatment and being killed through suicide is rational, vivid, and robust.

And even though Gawande acknowledges that legal euthanasia made the Dutch “slower than others to develop palliative care programs” of the very kind he advocates, he supports “laws to provide these kinds of [lethal] prescriptions” to those “suffering at the end of life” that is “unavoidable and unbearable.” But this is an entirely false premise: The three U.S. states that legislatively legalized assisted suicide—Oregon, Washington, and Vermont—do not require irremediable agony as a condition precedent to accessing doctor-prescribed death. Indeed, keeping in mind the principle of least resistance, Gawande should read Gawande when he writes, “Assisted living is far harder than assisted death, but its possibilities are far greater.”

The author should also have written about how to be a better care recipient. That takes the development of difficult life skills too. Caregiving should be a two-way street whenever possible: Being graciously dependent—and eschewing pride—is a great gift to those shouldering the responsibilities for another. While Gawande is a very strong advocate of providing the dependent with the kind of care they want, he has little to say to those who are or will be receiving care.

One final criticism. A book of this kind needs an index! (Sorry for yelling.)

Still the many virtues of Being Mortal far outweigh these complaints. We have learned to hold the grim reaper at bay far longer than was dreamed possible even one hundred years ago. But life, like all good things, must come eventually to an end. If we don’t want to slouch toward conflating suicide with “dignity” and enacting medically discriminatory policies based on denigrating attitudes toward the dependent, we need to build a more supportive and inclusive culture.

Gawande (mostly) points us in the right direction. His book is sometimes a painful read, but his prescription is important, and worth enduring the raw emotions that being mortal engenders.