I started reading Being Mortal: Medicine and What Matters in the End at the recommendation of a dear friend. I finished the book because of Atul Gawande’s powerful presence on the page, his intimate and detailed vignettes, his humble authenticity, and his personal motivation to write this book. My initial reactions to the stories and content were fortified a few days later.
I had just finished the final chapter when I received word that a close family friend faced a devastating sudden-illness-leading-to-death situation: her step-father and mother had celebrated their 40th wedding anniversary and a few days later her step-father was hospitalized. The diagnosis was not good.
I shared that I had just finished reading this awesome book about aging and chronic illness at any age. I said, “It’s about how the medical system focus is on medicine and not on the person, and what needs to change systemically.” I explained that the author is an incredible writer (he’s a staff writer for the New Yorker) as well as a doctor (a surgeon at Brigham and Women’s Hospital) and that the text is profound (he challenges the medicalization of mortality—the aggressive and often times futile interventions that, for the most part, leave patients feeling miserable on top of isolating them from loved ones).
I told her that I truly learned about aging, about chronic and acute diseases that can and do lead to death and that the quality of one’s life and death need to be the primary focus beyond the diagnosis and potential treatment of said disease. I shared a quote from the book that included the most important four questions people need to ask when confronted with potential end-of-life situations:
“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and the 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? And what is the course of action that best serves this understanding?”
I added, “Perhaps these questions will come in handy as you meet with doctors, with your family, and talk about what is happening and what you want to have happen.”
She replied a few days later that those four questions were extremely important to her family as they negotiated treatment options and quality of life decisions. Her step-father died within two weeks.
Being Mortal has been noted in the New York Times as “ . . . a personal meditation on how we can better live with age-related frailty, serious illness and approaching death”
In the Boston Globe as Gawande’s “best and most personal book yet — though a little depressing, until you get to the parakeets”
According to the Wall Street Journal, Gawande “argues for the importance of palliative care for the terminally ill—especially the palliative services organized in a systematic fashion by hospice groups. He ardently believes that such services and treatments fall within the scope of the modern surgeon’s concern. Dr. Gawande can ‘cut and cure’ with the best of them, but he has also come to ‘care and serve,’ as he shows in a series of stories about patients who, in the course of his providing their surgical treatments, required palliative services.”
Gawande pinpoints what the medical profession is doing wrong and the challenges our healing communities face to contend with terminal illness and the dying process; experts quoted in Gawande’s book argue for an expanded focus—to view the person beyond the disease and to treat terminally ill and aging people like people. According to Gawande, medical professionals basically control how we live our final days, yet their focus is 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.” Medical trainees, Gawande notes, should learn about geriatrics.
The book is broken into two sections (eight chapters). The first explores different models of senior living from multigenerational households to current nursing home protocols and those that are breaking the mold and making a difference (note the parakeet reference!). The second section discusses end-of-life medicine and the hospice model of care. Gawande incorporates two notable essays from his New Yorker column in the book: “Things Fall Apart” and “Letting Go.” As well, he weaves intimate, personal stories about clients and family and the realities of old age and terminal illness in modern America throughout to augment the text and bring readers deeper within the experience from a first person perspective.
According to the Sheri Fink of the New York Times: “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 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.”
As we support our clients who face terminal illness and/or death and the dying process, either in their own lives or those of friends and/or family members, I highly recommend reading Being Mortal and having your clients, their friends, their family members read the book as well. The discussion on palliative care, on changing the focus from treating a disease to being with the person is critical is essential.
For those crushed for time, you can also watch a PBS documentary interviewing Gawande (not as good as the book and still informative).