CURRENT BOOKS: Coping with the Constraints of Our Biology

Jeff Weitzman, MD

Being Mortal: Medicine and What Matters in the End, Atul Gawande, MD, Metropolitan, 297 pages (2014).

Dr. Atul Gawande’s newest book, Being Mortal, is on several bestseller lists, which is intriguing because many people would consider his subjects potentially depressing: elder and end-of-life care, nursing homes, assisted living, hospitals, hospice, palliative care, assisted suicide, and ultimately death and dying. Perhaps the book is popular because our society is finally moving toward a real discussion on mortality, the one certainty of the human condition. As Gawande observes, “Decline remains our fate; death will someday come.”

Gawande’s own journey to this discussion may be of particular interest to physicians. He is a general surgeon, not an oncologic surgeon or an internist, so the topic may at first seem like it would be distant to him. How did he get from general surgery to hospice care?

The answer to that question begins with his own experiences. As an intern, he was asked to obtain surgical consent for a spinal decompression from a patient with metastatic prostate cancer. The patient had failed radiation therapy and was in the late stages of his disease. He wanted aggressive treatment and consented to the procedure. His eight-hour surgery went well, but then he spent his few remaining weeks dying of complications in the ICU.  

Gawande wonders whether this type of aggressive surgery was indicated. He observes that “for a clinician … nothing is more threatening to who you think you are than a patient with a problem you cannot solve.” Yet he finds that the need to fix at all costs “has caused callousness, inhumanity and extraordinary suffering. This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing.”

In Being Mortal, Gawande intertwines the story of his dying father with a history and analysis of hospitals, geriatric care, nursing homes, assisted living facilities, hospice care and palliative care. He carefully examines what has been, what is slowly changing and what could indicate a better future.  

A hundred years ago, death came quickly. Acute infections, complications of cancer and results of trauma took you out in days to weeks. There was no need for a nursing home, no hospital to stabilize your condition, and no time for a chronic illness to develop. In some regions, old age was in your 40s, and you died at home. “In 1945,” notes Gawande, “most deaths occurred in the home. By the 1980s, just 17% did.”

Unfortunately the family unit has changed, and many elderly now find themselves alone. Disease that would end life quickly in the past can now be stabilized, at which point it becomes chronic, leading to a slow decline in function that threatens independence. Ultimately, many elderly can no longer stay home alone, especially if they have no family to assist them. In the industrialized world, writes Gawande, “the experience of advanced aging and death has shifted to hospitals and nursing homes.”

Gawande examines the history of this change in detail. In 1946, the Hill-Burton Act provided massive amounts of government funding for new hospitals. Two decades later, there were 9,000 new medical facilities across the country. For the first time, most people had a hospital nearby, and the facilities “became an attractive place to put the infirm.” Hospitals were then faced with housing patients with chronic illness and advancing age. Additional government funding led to the construction of custodial units for patients needing an extended period of “recovery.” These units were not set up to help the frail and elderly deal with dependency in old age. Instead, they “were created to clear out hospital beds,” giving rise to the name “nursing homes.” With the passage of Medicare in 1965, the number of nursing homes exploded, and 13,000 were built by 1970.

Nursing homes became the new paradigm for where we aged. Unfortunately they required giving up your independence and losing your privacy, with an open unlocked front door and a roommate. Gawande observes that “We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.”

Many elderly fared poorly in nursing homes. The search for alternatives led in 1980 to the concept of assisted living. The initial vision was to do away with nursing homes altogether, “to provide an alternative that would let frail elderly people maintain as much control over their care as possible, instead of having to let their care control them.” The goal, according to Gawande, was “that no one ever had to feel institutionalized. People could lock their door, have a kitchen to cook and a private bathroom. Help was provided for things they could not do. Most importantly, residents could refuse strictures imposed for reasons of safety or institutional convenience.” By 2010, almost as many people resided in assisted-living facilities as in nursing homes.

Unfortunately, assisted living became so popular that developers began applying the term to housing that often didn’t provide the expertise or quality initially intended. As Gawande notes, “safety and lawsuits increasingly limited what people could have in their assisted-living apartments, mandated what activities they were expected to participate in, and defined ever more stringent move-out conditions that would trigger discharge to a nursing facility. Things were moving back from where they came.”

Where do we go from here? Do we seek quality of life in our remaining years or length of life at any cost? Who makes the decisions: patient, doctor or family? What is the doctor’s role?

Gawande addresses these and many other questions in the last part of his book, which I leave readers to discover for themselves. The new paradigm of quality of life vs. length of life involves decisions that are often hard and complex. Although physicians are often blamed for making these choices strictly on a medical basis, patients and families are just as responsible for being unwilling to accept their own mortality or that of a loved one.

My own takeaway from Being Mortal is to ask the following questions when faced with a patient or loved one with serious illness or end-of-life decisions:

• What is your understanding of the situation and its potential outcomes?
• What are your fears and what are your hopes?
• What are the trade-offs you are willing to make and not willing to make?

First ask these questions and then stop talking: listen! At this point you will be better equipped to provide advice on an appropriate course of action. Let the patient lead the way, but provide structure for them to do so.

Being Mortal is a beautiful book, a must-read for physicians and anyone who will experience the struggle of friends or family with disease or the frailty and physical deterioration of aging. It will help put into perspective choices to be made and advice that can be given, and it helps us face our patients’ mortality in a more rational fashion than we see at present.

In Gawande’s own words, “Being Mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be.”

Amen.

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Dr. Weitzman, who serves on the MMS Editorial Board, is an emergency physician at Marin General Hospital, an internist at The Tamalpais and a Student Health physician at UC Berkeley.
Email: jweitzmanmd@gmail.com