The Beauty of Choice
Updated: Mar 2
By: Rose D.
Book Review of: Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande
It was an astonishing coincidence that I was recommended and began reading “Being Mortal: Medicine and What Matters in the End” by Dr. Atul Gawande; during the same time, that the news of President Carter’s choice to continue his end-of-life care through hospice care.
As a gerontology and aging specialist and a healthcare professional with acute care experience, hospice care often means different things to different people; and can vary greatly between healthcare professionals. I will share my insights and book review from this point-of-view. “Being Mortal” brilliantly outlined and eloquently relayed the beauty of individual patient choices, especially the aged and terminally ill, in medical decisions and care. While also highlighting the influence healthcare professionals can make in those decisions. We hear this often throughout healthcare and in our medical/healthcare training, packaged as shared decision making and patient-centered care. But as “Being Mortal” highlights there is a significant disconnect between the care patients want and the care patients receive in relation to their decision making and about the choices of their care. "Being Mortal" is a mirror reflected at us (healthcare professionals) and in parallel and in concert a reflection of patients wants and needs and it challenges us to dig deeper; look wider & broader; and overcome our extend-life-at-all-costs medical dogmas and consider providing the kind of care that honors the finite span of time of life, during the end-of-life, which for the aged and terminally ill are hastened by suffering and disease.
"Being Mortal" highlights the ebbs and flow of the disease process and the psychosocial changes that occur as a result for all involved. Dr. Gawande's personal recounting of his father's experience navigating his own illness provided greater insight especially those of a family caregiver who is also a healthcare professional. The dichotomy can be quite jarring and striking for many healthcare professionals who suddenly find themselves as family caregivers to an ailing parent. Among those in aging services, there is a growing shift in emphasizing more support for family caregivers especially for the aged. As our population ages, we often have family caregivers who are sandwiched between wanting to care for ailing and aging parents and simultaneously caring for their own families, some with young children. The mental health toll for all involved, can be significant. Especially if open conversations about wants and needs for care, often complicated by early onset dementias or acute disease processes, have not been had. "Being Mortal" has a special place among aging services. As it describes the very core of aging services, which is to support and provide older adults with choices whether it is safely aging in place at home or help navigating community-living or senior housing; providing healthy meals and nutrition education; and providing opportunities to remain connected and informed. "Being Mortal" is for many in the aging services a carefully curated 300 pages or so bounded open- letter to the healthcare system and those working in it, that there are better ways, to view end-of-life care for the aged and terminally ill. Many were wonderfully highlighted in this book.
Prior to working solely in aging services, I know that my time in acute care and view of hospice care were limited and skewed. Comfort care and hospice often felt like a defeat, that we had not done enough, or provided some extra-ordinary care. I know now that view, was terribly misguided. Further, it was also somewhat self-destructive, since the work of caring should always be permitted, not imposed, even as well-meaning & well-trained it is provided.
Palliative Care and Hospice Care is a type of specialized medical care and completely unique for those nearing end of life. It focuses on comfort and diminishing physical pain, while supporting patients' and their families psychological, spiritual, and emotional needs. Some criteria for hospice care includes a patient must have an incurable medical condition and an anticipated life expectancy of less than six months.
"Being Mortal" subtly provides a reprieve for healthcare professionals, if one is willing to take it, that being mortal is finite and the choices we make about the value of our moments, especially those for the aged and terminally ill, should always consider that in mind and that there is profound beauty in that choice. "The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now..."- Chapter 6
Reference: Gawande, Atul (2014). Being mortal : medicine and what matters in the end. New York :Metropolitan Books, Henry Holt and Company.