A friend lent me the book Being Mortal, by Atul Gawande. It is on The New York Times best-seller list, Gawande has been on many talk shows recently, and there’s lots of buzz about this book. Not surprising: There are so many of us who feel that there has become a “medicalization” of dying, instead of a natural end to life, with quality a big part of that.
It reminds me of how childbirth has also become medicalized in the past 30 years. It is rarely natural, without some form of drugs or intervention from doctors.
Gawande is a practicing surgeon in Boston, writer for the New Yorker and teaches at Harvard. He writes about how medicine has changed the way we age and die and how it has failed the people it is supposed to help. The end is often full of treatments that confuse our brains and “sap our bodies for a sliver’s chance of benefit.” It is spent in institutions where regimented, impersonal routines cut us off from all the things that matter to us. We have allowed our end years to be full of medicine, technology and strangers.
There needs to be much more emphasis on what we need and want in our last years, last weeks, last hours. People have priorities as they near the end, and well-being may be more important than survival for most of us.
Surveys find that top priorities in old age include: avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others and having a sense that life is complete. The chance to shape our lives, even at the end, is essential.
Gawande suggests that doctors take time to learn what’s most important to each patient about the potential final days, then help make the choices most likely to achieve those goals. He put together a list of questions for doctors to ask their patients toward the end. (The questions are appropriate for any disease, illness or life situation we may experience, as well-being matters all along the way.) They are:
What is your understanding of the situation and its potential outcomes?
What are your fears?
Hopes?
What are the trade off you are willing to make and not willing to make?
What is the course of action that best serves this understanding?
To step through this looking glass and honestly be with our answers requires tremendous courage to act on the truth we find.
One woman on her deathbed only wanted to attend a wedding the coming weekend – that was her one priority in the final days. So, Gawande did what he could to get her there. He passed on more chemo and surgery to fulfill this important want for her. She didn’t make it, but the example shows us what was most meaningful to her at the end.
Gawande used these questions with his own father, who was dying from a mass on his spinal cord. With the gentle questioning, love and patience, he saw his father’s fragility turn to more clarity. The father switched his focus to more interactions with family, discussions of his will and plans for sustaining his legacy – all meaningful things for him with the new acceptance of his condition. His story is interesting because it explains step by step what Gawande wants the medical profession to move toward.
Autonomy and independence are so important to all of us. Nursing homes could so much more meet the needs for the aged and dying, and Gawande cites some exciting examples of new work in this field on the East Coast. Patient-doctor relationships, what really makes life worth living when we are old and frail and some fascinating studies on perspective as we age are all included in this forward-thinking book.
The question comes down to what we fear the most – the mistake of prolonging suffering or the mistake of shortening valued life. Whatever the medical profession can offer, the risks and sacrifices they entail are justified only if they serve the larger aims of a person’s life.
Martha McClellan has been a developmental educator in early childhood for 38 years. She has moved her focus now to the other end of life and has written the book, The Aging Athlete: What We Do to Stay in the Game. Reach her at mmm@bresnan.net.
