A Good Life, All the Way to the Very End


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This is a book about mortality—about what it’s like to be creatures who age and die.… I find that neither I nor my patients find our current medical state tolerable. But I have also found it unclear what the answers should be, or even whether any adequate ones are possible.

—Atul Gawande, MD, MPH

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Title: Being Mortal
Author: Atul Gawande, MD
Publisher: Metropolitan Books
Publication date: October 7, 2014
Price: $26.00; hardcover, 304 pages

 

Mortality is the invisible observer in the oncology exam room. When people hear the three words, “You have cancer,” they see their world as they knew it swiftly passing as they enter the other world of the sick. This human experience was strikingly described in the opening lines of Susan Sontag’s modern classic, Illness as a Metaphor:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

From Euripides to Sontag, authors have tried to come to understand and demystify illnesses, aging, and mortality. Now, in his deeply affecting new book, Being Mortal, internationally regarded author Atul Gawande, MD, MPH, examines the limitations and missteps in our health-care culture within the inescapable realities of aging and death. During this intense medical literary journey, the reader is introduced to people who know how to have the hard conversations about being mortal, which is one of many reasons this is a valuable book for readers of The ASCO Post.

Key Narrative Thread

The first few lines of Being Mortal’s introduction speak to one of the disappointments in current medical school curricula, an issue that parallels ongoing discussions in the oncology community over best practices in end-of-life care. Dr. Gawande writes, “I learned a lot of things in medical school, but mortality wasn’t one of them. Although I was given a dry, leathery corpse to dissect my first term, that was solely a way to learn about human anatomy. Our textbooks had almost nothing on aging or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point.”

Further on, Dr. Gawande makes another important observation, one that he will explore throughout the narrative. “Modern scientific capability has profoundly altered the course of human life … but scientific advances have turned the process of aging and dying into medical experiences, matters to be managed by health-care professionals. And in the medical world, we have proved alarmingly unprepared for it.”

That is a serious charge, one that he qualifies within a few pages. “This is a book about mortality—about what it’s like to be creatures who age and die.… I find that neither I nor my patients find our current medical state tolerable. But I have also found it unclear what the answers should be, or even whether any adequate ones are possible.”

Over the past couple of decades, the oncology community has been addressing the state of end-of-life care that Dr. Gawande finds intolerable. For one, the integration of palliative care into best practices along with state-of-the-art psychosocial services has greatly enhanced the quality of care for our patients with advanced cancer. Leaders in the oncology community acknowledge that there is much work ahead in this difficult clinical setting, but the growing quality-of-life data are proof of the advances that have been made.

Being Mortal is as much about the broader cultural issue regarding aging and death as it is about how our medical system deals with mortality. The book consists of eight chapters that use anecdotes from Dr. Gawande’s personal and professional life to examine various scenarios surrounding mortality. Readers looking for health-care policy discussions about cost-effective end-of-life care won’t find them here. But they won’t be disappointed, either.

Cultural Observations

Dr. Gawande briefly delves into the debate about “rationing” medical care and the costs of end-of-life care in today’s cost-constrained environment, but those details are lost within his larger musings on our society that he feels—and rightly so—is decidedly ageist and unwilling to confront the realities of mortality.

Dr. Gawande contrasts and compares the way we age and die in different societies, using the experiences of his grandfather, who emigrated from India, and his college girlfriend’s aged grandmother, Alice. He makes some interesting points about cultural differences and how we look at the elderly. He writes, “My father’s father had the kind of traditional old age that, from a Western perspective, seems idyllic.… [W]hen we ate, we served him first. When young people came into his home, they bowed and touched his feet in supplication.… [I]n America, he would almost certainly have been placed in a nursing home.”

Dr. Gawande’s criticism of our rush to institutionalize our elderly has some merit, but his grandfather was a robust man until he died, falling off a bus at the age of 100, and he didn’t fit the stereotype Dr. Gawande was looking to make his point. He married his college girlfriend, and we follow her grandmother, Alice, who by her mid-80s had dementia and multiple comorbidities, leaving her helplessly frail and vulnerable. She was indeed put into a less-than-optimum nursing home.

We live in an aging society, and many cash-strapped American working families are simply not equipped to handle the difficult care issues of elderly parents and grandparents who are very sick. Writing about Alice’s nursing home experience, Dr. Gawande comments, “All privacy was gone. She was put into hospital clothes most of the time. She woke when they told her. She lived with whomever they said she had to.… [S]he felt incarcerated, like she was in prison for being old.”

Dr. Gawande then cites the sociologist Erving Goffman, who noted the likeness between prisons and nursing homes a half a century ago in his book Asylums. Some of this is difficult reading because we know the vast disparities of medical care that exist between the haves and have-nots in our society, and some nursing homes are indeed depressing and lonely “prisons.”

But placing a loved one in a nursing home is a heartbreaking experience, and Dr. Gawande is at times a bit hard in his judgments. That said, once he gets rolling into more inspiring territory, the book sails along as he follows a hospice nurse on her rounds, a geriatrician in his clinic, and reformers who want to radically change the nursing home model.

Provocative Vignettes

This book was never intended to be a blueprint for policymakers who want to fix broken parts of our health-care system. The power of Being Mortal lies in the writing and story-telling gifts of Dr. Gawande, as he offers provocative vignettes that drill to the marrow of the human mortality experience.

His candor is also refreshing, as he recounts some of his own misguided prejudices about the health-care system. “Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But multiple studies show otherwise.” The oncology community has long known that earlier initiation of hospice creates better patient and family outcomes.

Being Mortal’s sections on the cancer death journey, exacting and well drawn, will be valuable for the readers of The ASCO Post. “My father was in his early seventies when I was forced to realize that he might not be immortal,” writes Dr. Gawande, as he introduces some of the book’s most instructive and moving scenes.

His beloved father, a well-known urologist of uncanny vigor, is diagnosed with a spinal cord tumor. After several years of heroic struggling that included surgery and chemotherapy, father and son had the difficult conversation about his prognosis. In the end, after a shared decision-making discussion with his son, Dr. Gawande’s father chose not to have more treatments with their debilitating side effects. He was ready to face his mortality.

“We went to his bedside. My mother took his hand. And we listened, each of us silent.… [N]o more breaths came.” So ends this powerful and endearing book about human mortality, something we all share. Being Mortal is a must-read, especially for medical students. ■

 


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