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.

BEING MORTAL

Medicine and What Matters in the End

By Atul Gawande

282 pp. Metropolitan Books/Henry Holt & Company. $26.

Pax on both houses

Pages

Sunday, May 17, 2015

"Being Mortal: Medicine And What Matters In The End"

Atul Gawande’s ‘Being Mortal’

BEING MORTAL

Medicine and What Matters in the End

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