REVIEWED BY MONSIGNOR CHARLES J. FAHEY, MSW
BEING MORTAL: MEDICINE AND WHAT MATTERS IN THE END
By Atul Gawande Metropolitan Books, 2014 304 pages, $26
Atul Gawande, MD, MPH, a surgeon at Brigham and Women's Hospital in Boston, public health researcher, MacArthur Fellow, staff writer for The New Yorker magazine and the recipient of a number of prestigious literary awards — among his many achievements — has authored another marvelous contribution to medicine and health care. He notes, "This is a book about the modern experience of mortality — about what it's like to be creatures who age and die, how medicine has changed the experience and how it hasn't, where our ideas about how to deal with our finitude have gotten the reality wrong." In a humble admission evident throughout the book, he continues "I have also found it unclear what the answers should be, or even whether any adequate ones are possible."
Despite this disclaimer, Gawande's work is filled with wisdom and serves as a challenge for us in the health care field, especially those rooted in our religious tradition. He notes, "Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. If independence is what we live for, what do we do when it can no longer be sustained?"
The book's overriding theme is the unfortunate medicalization of aging, especially in its later stages, and dying. The substantial contributions that science has brought to medicine and public heath have resulted in delaying premature death and disability, as well as reducing pain and even suffering. However, medical advances have become something of a siren call, sometimes blinding us to the inevitable physical frailty accompanying aging and eventually resulting in death. Not everything can be fixed.
The human longing to avoid death as well as pain and suffering, coupled with a culture of medicine that all too often sees death as a failure of the profession and those who practice it, reinforce dynamics that frequently result in undue interventions prolonging pain and suffering without any appreciable effect on the desired — but unrealistic — outcome.
Using a number of real cases, Gawande gracefully, if often painfully, describes his interactions with patients and their loved ones. These illustrate the difficulties and uncertainties involved in decision-making. He details approaches he has learned gradually over the years, often by observing and listening to nurses, as well as to other physicians, as well as to patients and their loved ones. While the techniques are instructive, the rationale for using them is more important: helping the patient express what he or she values at this stage of life and what is hoped to be achieve by either undertaking a procedure or deciding to forgo it.
To use a phrase associated with my Jesuit friends and colleagues, the physician must become a "companion on the journey," eliciting the patient's hopes and fears and explaining as best as possible what might be the likely outcomes of adopting one course of action, or another action, or no action. Physicians attempt to assist the person to make a decision congruent with that which is important to him or her.
Gawande notes that as a person's end draws near, there is a time when responsibility shifts to someone else to decide what to do. His observations about end conversations are hardly limited to medical decision-making, but are resonant with the book Food for the Journey by Sr. Juliana Casey, IHM, and its emphasis on "setting relationships aright."
In one of many wise observations, Gawande notes the unfortunate tendency of some to undertake a possibly debilitating, painful course of action in the hopes of living longer, even when there is but a modest likelihood of that expectation being realized. He notes that it is often better to maximize what one values now rather hope for an uncertain future.
The author is critical of our caring for the very frail elderly who must have an alternative to living at home. The institutional approach seems to favor safety and protection over maximizing choice and relative autonomy. For those of us in the field, we know this is heavily influenced by regulation as well as by legal liability. Gawande gives a brief history of the evolution of nursing home care in the United States, with particular emphasis on the influence of hospitals to provide alternative arrangements for long-stay patients needing "rehabilitation." The passage of Medicare and Medicaid in 1965 assured that long-term care in the home and institutions, with the accompanying regulatory structures, would fall within the culture of medical care.
Gawande identifies a number of other approaches that seem promising, such as assisted living and the Pioneer Network movement that advocates for change in the cultures of aging and of long-term care. He cites many studies and personal perspectives centering on the ideal of continuing to find meaning in old age, even in constrained circumstances.
He also briefly and carefully touches on assisted death. Gawande opines that physician-assisted suicide marks a failure of health care, though he celebrates hospice care that insists on palliative care and relief of pain, even if it is foreseen to shorten life. That idea is consistent with traditional Catholic moral tradition.
His final thoughts, which in many ways summarize the book, center on his father's death. It closes with a description of the family's journey to Varanasi, India, and the Ganges River where final Hindu rituals were observed.
"Helping my father through the struggle to define that moment [when the cost of pushing limits exceeds its value] was simultaneously among the most painful and most privileged experiences of my life," Gawande says.
This beautifully written book provides many useful insights, but even more, it presents a thoughtful challenge to us in these fields.
MONSIGNOR CHARLES FAHEY is a priest of the Diocese of Syracuse, a former board member of the Catholic Health Association and the Marie Ward Doty professor of Aging Studies, emeritus, Fordham University, New York.