Unsettled by our widely disparate visions of a good life — and a good death — I quickly hung up and called my sister instead.
But more than a decade later, as we saw our mother succumb to the final stages of an indignant, drawn-out death from Alzheimer’s disease, I find myself returning to my brother’s words. I still find his view of a good life terribly narrow: If I lost a leg, I would certainly want to live. But I have also come to appreciate his utter certainty about what a good life — and a good death — looks like for him.
Most of us avoid thinking about death, which makes a good one harder to come by. Two-thirds of citizens in the United States do not have a living will. Although most Americans say they want to die at home, few make plans to do so, and half will die in hospitals or nursing homes instead — a situation Katy Butler, author of “The Art of Dying Well,” attributes in part to our “culture-wide denial of death.”
Specifying what a good death means is especially important for dementia patients, who will lose the ability to express their own wishes as the disease progresses. In the early stages, patients have time to reflect and clarify what they do and do not want to happen at the end of their lives. But these options dry up quickly in later stages.
This means that most families are left with a terrible series of guesses about both medical interventions and everyday care. Are patients still enjoying eating, or do they just open their mouths as a primitive reflex, as one expert put it, unconnected to the ability to know what to do with food? What kinds of extraordinary resuscitation measures would they want medical staff to undertake?
In the absence of prior directives, such considerations are estimates at best. As I sat beside her one recent morning, my mother repeatedly reached a shaky hand to her head, patting the side of her face. Puzzled, I leaned in.
“Does your head hurt?” I wondered. She moved her palm with painstaking slowness from her head to mine, cradling my cheek. “Are you in pain?” I asked. Her mouth parted, but no words came. My eyes welled. Is this the path to the good death she wanted?
I may never know the answer. But over time, I did learn how to help her have a better one. One afternoon, after she was frightened by the efforts of two nurses in her residential dementia care facility to lift her from a wheelchair, a quiet phrase slipped out of her mouth. “There you go,” she murmured calmly, just as she had for a thousand childhood skinned knees and bee stings. She was consoling herself, I realized, and teaching me how to do it at the same time.
I learned to read micro-expressions, interpreting small facial shifts for fear, anxiety or contentment. I discovered I could calm her breathing with touch: holding her hand or settling my hand on her leg. She would visibly relax if I made the shushing sounds so second-nature from the sleepless nights I’d rocked my own babies.
“It’s okay, love, you’re okay, I’m here, I love you,” I would murmur, patting her shoulder. She would sigh, and close her eyes.
Some of the path to her good death was luck. Michelle, another dementia resident, decided she was my mother’s nurse. She sat beside her constantly, holding her hand and tucking small morsels of coffeecake between her lips. Whenever I arrived, Michelle would spring up, give me a surprisingly fierce hug and offer her informed assessment of how my mother was doing. “I take care of her,” she told me repeatedly, stroking my mother’s cheek.
Other parts of her good death came through privilege. She was the last of a generation of teachers to retire with a significant pension, easing the substantial financial burden of 24-hour care. My father’s own secure retirement enabled him to care for her at home for years, and to spend hours with her every day after she moved into a residential care facility.
But her good death is also a result of planning. Having laid out her wishes with some precision, my mother was part of the minority of Americans with an advanced directive specific to dementia. This means that we knew she wanted comfort feeding, but no feeding tube. A DNR (do not resuscitate) order helped guard against unnecessary pain and suffering — the broken ribs common in elderly resuscitation attempts, for example — in case of a catastrophic event. In the end, her wishes were followed: there were no tubes and no machines.
Some indications suggest more Americans are starting to think about what a good death will look like.
There are initiatives to encourage people to talk about end-of-life care. The Death over Dinner movement suggests groups of friends host dinner parties to process how they feel about death. “How we want to die,” the movement’s website prompts, “represents the most important and costly conversation America isn’t having.” Indeed, advising people on how to die well may be the logical next step for a burgeoning wellness industry that has captivated the attention of a generation trying to live a better, more balanced life.
There is no way to know for certain whether my mother’s death was the good death she wanted. But her willingness to think it through left us with less guesswork than most — and provided a good map for me as I tried to figure it out.
I am not sure I could ask for anything more.
Cynthia Miller-Idriss is professor of education and sociology at American University.