Accepting Mortality: A Caregiver’s Notes on Two Thought-Provoking Books

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A couple of months ago my book club read a remarkable book that I felt I just had to share with my readers. This book, Being Mortal, by Atul Gawande, is a discussion of human weakness and mortality, especially as one ages. It is also a challenge to healthcare professionals, as well as each of us, to look at life and death differently, reminding us that it is not the quantity of life that matters, but the quality. . . Serendipitously, a few days ago I picked off the shelf for a reread the book Refuge by Terry Tempest Williams. I remembered that I had enjoyed it in grad school, but I hadn’t remembered that the basic story deals with the author learning to accept her own mortality and her mom learning to find quality in life after she rejects further cancer treatments.

The main premise in both books is that because we are mortal and don’t have time or energy for everything, it is important to consider what matters most to us as we live our daily lives. This shouldn’t change as our health begins to deteriorate and we begin to make medical decisions to deal with our mortal bodies. Gawande’s book highlights how important it is for doctors and caregivers (including family) to assist care receivers as they prioritize what they want out of life and communicate these priorities to those who are caring for them. This idea may come as a surprise to many caregiving professionals who have often considered prolonging life as the ultimate goal. Gawande explains this problem and outlines important questions for discovering the care receiver’s priorities:

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 its 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? (Gawande, Page 259)

In other words, each of us should search our hearts to discover what quality of life should look like as we decline. This will affect our preparations (such as signing “Do Not Resuscitate Orders); our final decisions regarding dying at home or in the hospital; and whether we opt for invasive treatments or allow death to come naturally. This attitude will also require hard conversations—probably earlier than anticipated, but with potential for unbelievable results. At least this is what the author discovered when his father chose hospice care over further cancer treatments.

I helped him to stand. He took my arm. And he began walking. I’d not

seen him make it farther than across a living room in half a year. But walking slowly, his feet shuffling, he went the length of a basketball floor and then up a flight of twenty concrete steps to join the families in the stands. I was almost overcome just witnessing it. Here is what a different kind of care—a different kind of medicine—makes possible, I thought to myself. Here is what having a hard conversation can do. (Gawande, Page 230)

Many people have learned to avoid difficult end-of-life conversations, looking for another way out or simply denying the mortality that we all share. Another common error is to think that one hard discussion is enough. Gawande asserts that a person needs time to process the immanence of death—and some of that processing requires multiple discussions with loved ones and trusted medical professionals. (Gawande, Pages 182-3)

In the book Refuge, we see both the author, Terry Tempest Williams, and her mother processing their mortality as her mother’s cancer progresses. Mom appears more open to processing—she accomplishes the task through spiritual experiences, encouraging others, and becoming more independent as she takes charge of decisions regarding her health and daily life. It takes the daughter longer to accept their common mortality, but she eventually discovers that to deny the fact that each of them will die one day (perhaps in the not too distant future) is harmful to the life they live now:

I have refused to believe that mother will die. And by denying her cancer, even her death, I deny her life. Denial stops us from listening. I cannot hear what Mother is saying I can only hear what I want.

But denial lies. It protects us from the potency of a truth we cannot yet bear to accept. It takes our hands and leads us to places of comfort. Denial flourishes in the familiar. It seduces us with our own desires and cleverly constructs walls around us to keep us safe.

I want the walls down. Mother’s rage over our inability to face her illness has burned away my defenses. I am left with guilt, guilt I cannot tolerate because it has no courage. I hurt Mother through my own desire to be cured.

(Williams, Pages 75-6)

Sixteen years passed between the time that Williams’ mother was diagnosed with cancer and the day of her death. Not everyone has that long to come to grips with their mortality and to have those hard discussions with family and medical personnel. This woman had time to find herself, to enjoy life, and to let go purposefully—embracing the mortality that most of us deny.

The journey of embracing mortality in one’s own way as exemplified by the mother and daughter’s story in Refuge is what Gawande advocates for all of us. And he encourages those who are caregivers to assist rather than to hinder our care receivers. Instead of pushing for longer lives, we can be advocates for lives that are meaningful, and for each person what this looks like may be a little different. This type of attitude is not usually easy in today’s society; it requires purposeful reflection, honest communication, and most of all courage:

At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped. Such courage is difficult enough. We have many reasons to shrink from it. But even more daunting is the second kind of courage—the courage to act on the truth we find. (Gawande, page 232)

For some of us acting on the truth we find will come early—as we first see the signs of aging or illness. For other’s the inevitable decisions will be put off because of busyness, pain, or denial. . . In any case caregivers can be supportive by accepting and encouraging the care receiver’s right and need to make difficult end-of-life decisions while they are still capable. Our acceptance will enable that loved one or patient to find the courage they need to embrace their mortality by making clear decisions about how they shall live until they pass from this dimension to the next.