“Being Mortal”

Atul Gawande’s best-selling book Being Mortal: Medicine and What Matters in the End targets not only those whose mortality looms before them, whether from a terminal illness or from the ravages of time, but their children and others who will be helping them make those decisions that affect the last years of their lives. While Gawande writes primarily of the elderly, he also examines cases of younger patients who are in the process of dying.

The author is a surgeon at Brigham and Women’s Hospital in Boston, a staff writer for The New Yorker, and a professor at Harvard Medical School. He brings to this book not only medical expertise but evocative retelling of the case histories of his own family as well as of patients. It is through poignant narratives that the author draws readers into self-examination of what being mortal entails for them.

That which emerges from the book is neither a morbid discussion of death nor a glib reassurance of immortality. In fact, he offers as many questions as he does answers, specific queries that encourage readers to arrive at their own conclusions.

Gawande praises the Gundersen Lutheran Hospital in La Crosse, Wisconsin, whose elderly patients not only incur end-of-life hospital costs below the national average, but during their last six months spend half as many days in the facility. The reason, according to a critical care specialist in that institution, can be attributed in part to an admission form that asks all patients: At this moment in your life do you want to be resuscitated if your heart stops? Do you want aggressive treatments such as intubation and mechanical ventilation? Do you want antibiotics? Do you want tube or intravenous feeding if you can’t eat on your own?

Patients who come earlier in their lives to the hospital for care will have different answers than when they return years later.

Like many physicians, Gawande in the past found himself reluctant to have honest discussions with people nearing the end of their lives, sometimes choosing to offer unsubstantiated hope rather than a realistic prognosis. Ultimately he learned to ask four vital questions: 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? What is the course of action that best serves this understanding?

This conversation, he found, ultimately not only brings more peace to the patient but to the family as well.

“Technological society has forgotten what scholars call the ‘dying role,’” he explained, “and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms.”

When “we deny people this role,” he continued, “out of obtuseness and neglect, [the omission] is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.”

Sometimes the “dying role” is not served when heroic medical measures lengthen life for a few days at the expense of extreme discomfort; on those occasions hospice may fulfill that expectation, he maintained.

Ultimately, “It is not death that the very old tell me they fear,” Gawande wrote. “It is what happens short of death – losing their hearing, their memory, their best friends, their way of life.” When the ravages of time no longer allow people to live in their own homes, then what? Once upon a time the elderly were taken into the families of their children, but today this solution is seldom an option.

Subsequently the recourse became a nursing home, with an efficient and safe environment; scheduled routines for dining, bathing, medications, bedtimes, and recreation; and living with an assigned roommate – in short, a total loss of autonomy.

Gawande wrote of Keren Brown Wilson who in the 1980s was an originator of the assisted living facility concept, as she hoped to create a place in which people could live with freedom and autonomy regardless of their physical limitations. She thought that being old and frail was no reason to submit to life in an asylum. When Wilson’s mother required a “home,” she determined to design a facility that would be literally a home, a place where residents decided how to spend their time, share their space, and manage their possessions.

He also wrote of physician Bill Thomas who had experienced a “giddy, thriving abundance of life . . . on his farm” but encountered “a confined, institutionalized absence of life” when he went to work as medical director at a nursing home, recognizing the “Three Plagues of nursing home existence: boredom, loneliness, and helplessness.”

His solution was to put live plants and two parakeets in each resident’s room, along with four dogs, two cats, a colony of rabbits, a flock of laying hens, vegetable and flower gardens, on-site child care for the staff, and a new after-school program as a part of the residents’ communal life. While some conservatives were concerned that these measures might compromise the health and safety of residents, Thomas found that their mental and physical well-being improved as their lives became more vital.

The progressive thinking of innovative planners such as Wilson and Thomas is becoming more common in the design of residences for the aging, as typified by the Good Samaritan Society – Scandia Village in Sister Bay.

Gawande’s Being Mortal not only reminds us of the fact that our time on earth is limited, but also will initiate both introspection and conversations that are an important part of dealing successfully with the inevitable consequences of our mortality.

Being Mortal: Medicine and What Matters in the End by Atul Gawande, 283 pages, Metropolitan Books/Henry Holt and Company, 2014.