Being Mortal: Medicine and What Matters in the End
?by atul gawande?
metropolitan, 304 pages, $26
Atul Gawande’s Being Mortal: Medicine and What Matters in the End is an eminently useful book. Gawande, a surgeon and a staff writer for the New Yorker, 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, the bad, and the ugly of others’ experiences, we will make better choices ourselves.
Dangers lurk in these woods. A crass utilitarianism has infected bioethics and the practice of 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. With cost containment becoming the new buzzword in medicineparticularly given the much-ridiculed but far from unreasonable apprehension that the Affordable Care Act could lead to “death panels”a reader may worry that Gawande recommends forcing the weakest and most vulnerable out of the lifeboat if they refuse to jump themselves.
Fortunately, that’s not so. Gawande’s approach is loving toward and deeply respectful of those facing the end of days. He adamantly insists that the aged and dying are entitled to the best care reasonably obtainablewhich sometimes isn’t raging against the dying of the light. Indeed, he convincingly argues that forgoing 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 forwardeven for the most informed patients and caregivers. At such times all we can do is exercise “prudent strength.” I found the author’s pointed lament about the decline of geriatricsand its causesparticularly 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 that 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 still have nothing beyond sore knees about which to complain. But in ten short yearsif I am luckyI am statistically likely to be on some form of strong medication and unable to walk the eighteen 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 betake your pickdemented, incontinent, wheelchair-dependent, 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. Knowing what I wantand don’t wantbefore the crisis will make it easier for me and my future caregivers to navigate.
As an only child, I am the primary caregiver for my ninety-seven-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 believeslike my motherthat happiness sometimes matters more than safety, and forcing bitterly unwanted interventions on a resisting person can be the wrong approach.
Gawande supports changes in hospice that I believe are long overdue. Under current Medicare rulesfollowed by most private health insurers and Medicaidthose diagnosed with six months or less to live may opt for hospice. But as a condition of receiving hospice’s multidisciplinary approachhouse calls by nurses and pain control specialists, as well as social and spiritual support for patients and familiespatients must forgo all life-extending or curative interventions. Forcing the dying to make that cruel choice enervates hope. As a direct consequence, many reject hospice until just a few days before death. This reduces hospice to what end-of-life expert Dr. Ira Byock denigrates as “brink-of-death care.”
Reversing this either/or isn’t just a matter of compassion, but of good public policy. As Gawande notes, a study conducted by Aetna Insurance permitting “concurrent care”having access to both hospice and life-extending treatmentssaw hospice participation rise from 26 to 70 percent of eligible patients. Moreover, many were so pleased with the hospice care they were receiving that they did not pursue painful last-ditch efforts, visiting “the emergency room half as often” as the 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 menace of assisted suicide. Here, alas, Gawande deeply disappoints. After spending nearly 250 pages strongly advocating personalized and life-affirming care for the elderly and dyingand despite noting that a terminal diagnosis can be wrong (using the late Stephen Jay Gould’s first cancer, which he survived, as his example)the author spends a few short pages surrendering to the 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.” Many ethicists would disagree, as did the Supreme Court of the United States, which ruled unanimously in 1997 that the distinction between allowing nature to take its course by refusing life-extending treatment and being killed through assisted 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,” he supports “laws to provide these kinds of [lethal] prescriptions” to those experiencing “suffering at the end of life” that is “unavoidable and unbearable.” But this is a false premise. The three U.S. states that legislatively legalized assisted suicideOregon, Washington, and Vermontdo not require irremediable agony as a condition precedent to allowing doctor-prescribed death. Indeed, Gawande should read Gawande when he writes, “Assisted living is far harder than assisted death, but its possibilities are far greater.”
The many virtues of Being Mortal outweigh these complaints. We have learned to hold the grim reaper at bay far longer than we 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 the prescription he offers is much needed.
Wesley J. Smith is a senior fellow at the Discovery Institute’s Center on Human Exceptionalism.