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Being Mortal: Medicine and What Matters in the End Paperback – September 5, 2017
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In Being Mortal, bestselling author Atul Gawande tackles the hardest challenge of his profession: how medicine can not only improve life but also the process of its ending Medicine has triumphed in modern times, transforming birth, injury, and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death, the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying, checking for vital signs long after the goals of cure have become moot. Doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering. Gawande, a practicing surgeon, addresses his profession's ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person's last weeks or months may be rich and dignified. Full of eye-opening research and riveting storytelling, Being Mortal asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end.
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The book breaks down into roughly two sections – Part A, a critique of the elder-care system in America that relies on nursing homes, and Part B, an examination of the question : 'when do heroic measures to save or prolong lives actually make things worse, and what should be done instead?'
Part A has personal relevance to many of us with parents in nursing homes. Not a day goes by but I consider whether something different could be done for my mother, knowing that I, holding power of attorney for her advance medical directives, have the legal power to change her circumstances. Dr. Gawande abhors the same things about nursing homes that the rest of us do, which he illustrates with examples until he says 'You'd think we would have burned the nursing homes to the ground.' (p. 79) The models he cites as alternatives all require at-home caregivers, saying 'Your chances of avoiding the nursing home are directly related to the number of children you have, and, … having at least one daughter seems to be crucial to the amount of help you will receive'. He cites his grandfather who lived in India to 110 years, holding title to the family lands until his death, while his uncles in India lived out their lives to old age themselves, tending to his needs, and waiting for their inheritance. His successful examples of alternatives include the 'assisted living' arrangements that are very expensive and inadequate for people who lack the ability for self-care; group living arrangements under the supervision of a dedicated individual, and bringing plants and animals into nursing homes. That was the end of Part A and the beginning of my realization that there are still no magic answers.
Part B relates the experience of several patients of Dr. Gawande's with terminal illnesses. The question of 'when to let go' is the focus. The answer is never clear, even with a mentally competent patient, and Dr. Gawande's examples don't lead to a recipe that will serve for all circumstances. He does clearly state that people's priorities change as they perceive their time is limited, not a great breakthrough considering the old addage 'you don't miss your water until your well runs dry.' He advocates the importance of knowing in advance what measures and risks patients wish to take to prolong their lives – again, not news with the prevalence of Advance Medical Directives – and he advocates that Medicine work harder to implement those wishes in spirit as well as procedure. But he assumes that substantive conversations occur while drafting the answers to the questions posed by the Directive. In my experience, the questions are posed and answered in a vacuum, like a lawyer's office, or an admitting workstation, that avoids the reality of the answers, as if they pertain to someone else. My mother doesn't yet believe she will never leave the nursing home, and she doesn't seem to think her time is limited, and the breach between her willingness to understand those two facts and my ability to negotiate that terrain is vast. The development of a healthy mindset around the fact of our mortality that leads to the closing stages of a good ending must come from within, and a dysfuntional life will most likely lead to a dysfunctional end.
Like Lake Woebegone, where all the women are strong and the men good looking, all the patients in Dr. Gawande's examples come from essentially functional families. There is someone home to send the patient back to, or, someone nearby willing to work hard to provide care for the patient. The people in nursing homes don't have that, mostly. It is not just a question of whether a potential caregiver is too selfish to be bothered with becoming a caregiver, but also a question of the life-long autonomy that the patient claimed for themselves, needing no one, themselves caring for no one, who find out in the end they are dependent on others. Perhaps they have alienated all their potential caregivers. Perhaps they are more comfortable with a professional 'friend' than a family member, and show more respect for someone who is helpful because that's their job, than someone who has always been around like a son or a daughter. There is no miracle diet. You want to lose weight : stop eating so much. You want Grandma out of the nursing home, prepare to change your life for an indeterminate length of time. Maybe you will reach enlightenment. Maybe there is true happiness in giving up oneself for the good of another. Maybe Grandma will wreck your peaceful home.
Dr. Gawande writes well, his patient examples are interesting, he shows personal growth and a deepening understanding that appear to be sincere and believable. Just by relating his experiences, he could be helping change the mindset of medical practitioners to pay more attention to their patient's wants. A more apt title, I think, would have been Being Human with the sub-title How a Doctor Learned to Listen to Patients. He is as much a subject of the book as its topic, and his growth and experiences could stand on their own without suggesting that he has solved the problems of mortality and eldercare.
Dr. Gawande's book focuses both on medical procedures and living conditions in later life. He addresses the reality that as people near the end of life, decisions about their living situation are primarily aimed at ensuring safety at the expense of retaining autonomy, especially when adult children are making the decisions. "We want autonomy for ourselves and safety for those we love," a friend tells the author. We mistakenly treat elders as children, Dr. Gawande says, when we deny them the right to make choices, even bad choices. People of any age want the right to lock their doors, set the temperature they want, dress how they like, eat what they want, admit visitors only when they're in the mood. Yet, nursing homes (and even assisted living communities) are geared toward making these decisions for people in order to keep them safe, gain government funds, and ensure a routine for the facility.
In addition, Dr. Gawande shows how end-of-life physical conditions are most often treated as medical crises needing to be "fixed," instead of managed for quality of life when treatment has become futile. Life is more than just a stretch of years; it must have meaning and purpose to be worth living, he says. This is a familiar concept (in fact, I read parts of this book in The New Yorker), but he builds a strong case for reform through case studies, stories from his own life, and examples of how individuals are either becoming victims of, or bucking, the system. He addresses assisted suicide only briefly, but he mentions it in relation to end-of-life care. "Assisted living is far harder than assisted death, but its possibilities are far greater as well," he writes.
The good news is that some people are doing what they can to improve the well-being of elders nearing the end of their lives. He demonstrates the beauty of hospice care in the home. He tells a great story of a doctor who convinced a nursing home to bring in two dogs, four cats and one hundred birds! It was a risky proposal, but the rewards were phenomenal. It made the place, and the people, come alive. I am aware, though, that these movements rely on individuals, and only if enough people have a vision for change will it come about. For that reason, I hope this book makes a big splash!
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