Tuesday, January 13, 2015

Reflections on "Being Mortal"

In a thoughtful response to Dr. Atul Gawande's new book, Being Mortal: Medicine and What Matters in the End, journalist Sarah Kliff captures the difficulty of the topic for most of us:

We don't like to think about death — and so we don't.

And that can make for less satisfying experiences of old age and of death than we need have.

Gawande is a crystalline writer, not what you'd expect from a surgeon. He skips comfortably between sociological exposition, journalistic story-telling and personal reflection. After all, dying is inescapable, but we interact with that reality on multiple levels, as caregivers, healers, patients and unique individuals whose days are always ebbing. This is a wonderful book.

Because this book is being discussed widely (it is currently Number 4 on the New York Times non-fiction bestseller list), I'm not going do much describing. I'll just borrow some tidbits from Kliff's article and then add some reflections about some deaths in my own family experience.

Here's Kliff:

[Gawande] argues that his profession has done wonders for the living, but is failing the dying. "Scientific advances have turned the processes of aging and dying into medical experiences," he writes. "And we in the medical world have proved alarmingly unprepared for it." ...

"The curve of life becomes a long, slow fade," Gawande writes. That slow, long fade means we get to live longer, but often at the cost of our autonomy, and, in the view of some, at the cost of our most essential self. Autonomy — the freedom to see the people we want, partake in the activities we enjoy, and wake up each morning to our own agenda — is a value that arguably all of us hold dear. Even as physical independence disappears, it is possible (albeit more challenging) for autonomy to remain and for the elderly to retain control of how they spend their days.

Gawande speaks with Keren Wilson, the woman who opened the country's first assisted-living facility. And she gave him one of those quotes that every reporter dreams of — a single sentence where, after hearing it, you can't ever look at the issue in the same way again. "We want autonomy for ourselves and safety for those we love," she says.

My parents both achieved almost Un-American deaths. That is, they died in their own home without much medical intervention. This was not the norm, even in the 1990s. I often say they soldiered on until their bodies wore out, never seemed to imagine changing how they lived even as what they could do narrowed, and never wanted to be a burden to anyone else. When their time came, they slipped away. This was both brave and terrible.

My father had emphysema (COPD: chronic obstructive pulmonary disease) for at least a decade. It was not diagnosed and oxygen prescribed (as is routine) until two weeks before he died. Essentially, he had allowed himself to age out of the medical system. Most of his life, his doctor was either a friend of his parents or someone he had gone to high school with. When the last of those retired, he acquired a nominal connection to some guy in what I thought of as a Medicare mill, an impersonal office in a suburban strip mall. He was by then too old and enfeebled to ever learn that one's name. And the scientific practice there -- blood pressure measurements, weigh-ins, tests -- never made any sense to him. So he sort of fell out. He had a heart attack in the bathtub at age 87 and died before the neighbor my mother summoned to help could move him back to his own bed.

My mother had a somewhat better experience with doctors. After my father died, she canvassed her friends and somehow found a woman geriatrician whom she liked. But she was medically-averse. She didn't expect a doctor to extend her life span. The only expedient she believed in to combat aging was to keep moving. (In fact my father's COPD diagnosis only came because she was so frustrated that he had stopped being able to take his labored half-block walks.) She took no medicines but a vitamin pill; I think she thought drugs would kill her. She eventually had an incapacitating stroke and, thanks to neighbors and that geriatrician, we did not move her to a hospital against the wishes she had long expressed. She died in her own bed four days later.

Gawande's book made me realize that my parents had brought me up to value autonomy over safety, so it never occurred to me to urge on them choices that might have resulted in more medical intervention in their deaths.

But on reflection, I also realize that my parents were not the primitive throwbacks that the stories I've just told might suggest. You see, my mother's mother, my much loved grandmother, had suffered through an aging process -- a medically assisted "long slow fade" -- like those Gawande so vividly explores. She just did this a couple decades before such experiences became the norm, finally passing on at the age of 91. Sometime in the 1950s, the vigorous woman I'd known fell on the Buffalo winter ice and broke a hip. She was given what was always called in the family "that plastic hip." Whatever the doctors implanted never really worked and gave her chronic pain. She never walked unassisted again. She required daily assistance from a paid (and devoted) caretaker as well as family members. Despite being able to afford and secure the most modern medical care, she lost almost all hearing and later her sight. She had at least one surgery to try to fix or upgrade the "hip," but that didn't help. She got pneumonias and bowel stoppages that required hospitalization and even surgery. And she dragged on like this for almost 20 years, patient but frustrated and extremely frustrating to those near her. She died in hospital intensive care in 1972. This was medicalized death in all its horror.

I wonder, after reading Gawande, if some of what I thought was my parents' extraordinary passivity in approaching their own mortality derived from what they had seen happen to this lovely old woman who was very much a part of our lives. They weren't going to go through that.

I hope not to either.


Michael Strickland said...

I think your parents knew exactly what they were doing and in fact both had enviable deaths, a quick heart attack at 87 and a death four days after a stroke rather than living on for years as an invalid. I hope my own death is as swift and kind.

Hattie said...

I do think the proper medical interventions could have made your parents' last years more comfortable, even if they did not prolong their lives.
The fact is that medical care for old people is lousy, and old people know that. That's why so many avoid doctors if they can.
I'm getting to know a lot of my fellow seniors at the Senior Center and getting a lot of insight into what happens to people with various backgrounds and health problems. As a group we elders seem to be well, very unwell, or somewhere in between, which of course is the same situation as with humans of any age. The main health dangers to elders here are diabetes and heart trouble. Not so much cancer.
I was talking to the supervisor of the senior center the other day, and she said that seniors who use the services of senior centers live ten years longer than those who don't. Don't know where she gets her stats, but I believe her.

Ronni Gilboa said...

If you want to die, in the same manner you lived, be very clear with your partner/wife/spouse/lover , but most of all have your living will and other paperwork put in order. Otherwise, you will be at the mercy of the EMTs, Doctors & nurses who have a legal responsibility to keep you alive, by what ever means, with quality of life and who you are not taken into consideration. There are organizations that can help you g

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