“Being Mortal: Medicine and What Matters in the End” is a powerful survey of the fraught relationship between medicine and death in America. The author, Dr. Atul Gawande, is a surgeon and professor of medicine and public health. The main artery running through the text is the conflict between the drive to preserve life and the inevitability of death. In American culture, medicine’s raison d’être is to prolong life for as long as possible. This urge to deny death often overrules the drives to prolong dignity, comfort, and meaning at the end of life. As he writes, “medicine’s focus is narrow” – fix an ailment, treat a chronic illness. By contrast, end-of-life is a broad, complex stage involving accumulating physical decays as well as the social, cultural, religious, relational, and intrapsychic conditions of the patient.
The drive to live at any cost vs. the drive to live well
As Gawande writes, despite medicine’s narrow focus, “we have decided that [medical professionals] should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns.” A doctor’s directive is to save life, to prolong life. However, this goal may be at odds with the patient’s goals. Americans have a powerful compulsion to cure sickness throughout life. Even when facing the inevitability of death, that drive to heal or solve persists. Medical professionals can easily become enablers of patients’ denial of death. The doctors’ need to heal exists symbiotically with a patient’s need to live. But there is no cure for death. At some point, the denial must end.
“[O]ur most cruel failure in how we treat the sick and the aged is the failure to recognize that they (patients) have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life . . . .” Therein lies the friction between medicine’s compulsion to fix problems and the patient’s desire to live well. Often, efforts to fix and heal and treat bring both risked and realized declines in quality of life.
Navigating medical decision-making
The text is dotted with stories from Dr. Gawande’s personal and professional life, including that of his father’s death, that illustrate the complexities of end-of-life decision-making. Gawande’s father, following increasing neck pain and numbness in one hand over the course of several years, discovered he had a tumor growing in his spinal cord. Rather than undergo a surgery with “uncertain benefit,” he left the tumor untreated to retain his current level of functioning. Avoiding surgery allowed him to continue the activities that made his life enjoyable – working, exercising and living just as before his diagnosis. The tumor continued to grow, however he did not suffer any symptoms for months. Such a decision – to forgo a surgery – was made with the help of a clinician who took the time to consider the whole of the patient’s life, his priorities, and his goals, and collaborate to make a decision. As time went on and his condition changed, his father continued to make decisions in collaboration with his family and providers that carefully considered his goals for life and death. His father’s frequent question was not how to extend his life, but how to extend a life of acceptable quality to him.
Avoiding “Dr. Informative”
Gawande writes about providers who act as “Dr. Informative.” These doctors provide facts and figures to assist with medical decision-making, but do not help their patients digest that raw information into visions of outcomes. As his condition declined, his father continued to find “moments worth living for,” by continuing personal projects and spending time with family. As his body reached its end, his goal shifted to preventing suffering. He made clear to his son that he wanted all measures taken to prevent suffering, including at the expense of life-prolonging measures.
Toward the end of the book, Dr. Gawande issues an imperative to health professionals. He implores providers to treat patients with a vision beyond acting solely as “Dr. Informative.” He implores other professionals to see their work as “aiding people in their struggle” with the limits of being human. “[I]nterventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.”
How to invite productive discussion with your doctor
To invite medical providers to collaborate with you on making decisions, rather than act as “Dr. Informative,” consider using the following questions based on questions in Dr. Gawande’s book:
- What are the potential outcomes of the different options?
- I would like to tell you what I am afraid of and what I want to achieve.
- What are the trade-offs for each of my options? I would like to tell you what I am not willing to lose.
- What is the best course of action that serves my particular situation?
Working with a therapist can also help you come to understand what is important to you in life as you face medical decisions.