On the Sunday after Christmas, My Lovely Wife and I traveled to a northern suburb to gather with her clan at the nursing home where her mom now resides. It was a noteworthy gathering in many ways: Shirley’s grandson, Andy, and his wife and son had come all the way from South Korea, and Shirley shared a table with her sister Charlotte and sister-in-law, Lois, who hadn’t seen her since Shirley’s stroke, nearly four months earlier.
At a certain point, one of the grandkids gathered everyone together for a photo — four generations of Parkers surrounding three elderly women who represented pretty well the promise and peril of living a longer-than-expected life. There in the center was Shirley, 85, active and independent until a stroke paralyzed her right side and sent her, in rapid order, to the ER, hospice, and finally this nursing home in Roseville; her older sister, Charlotte, who lives in an assisted-living facility south of the city and gets around as best she can with a walker; and Lois, who still lives independently in her own home, still drives to her volunteer activities each week, and who, on her 90th birthday a couple of years ago let everyone know she’s still open to dating. (I’m not so sure she was kidding, either.)
It was a fun and frenetic afternoon, what with toddlers and infants belonging to grandkids I remembered as toddlers and infants mingling among the suddenly (and not-so-suddenly) aging in-laws I first knew as twentysomethings. I’ve been thinking about that gathering lately as I read Atul Gawande’s new book, Being Mortal: Medicine and What Matters in the End, a masterful exploration of aging, death, and dying — and our culture’s struggle to accept it.
I’m not going to go into a full-on review of Gawande’s book here (read Marcia Angell’s take on it from The New York Review of Books), but I was struck by a couple of major points he makes:
Our healthcare system is not designed to help the elderly live well in their final years.
“The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet — and this is the painful paradox — we have decided that they 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. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.”
As a culture, we are not prepared to talk about death in a way that allows doctors to recommend treatment approaches that ensure a peaceful end-of-life journey.
“Two-thirds of the terminal cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did have discussions were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit. Most of them enrolled in hospice. They suffered less, were physically more capable, and were better able, for a longer period, to interact with others. In addition, six months after these patients died, their family members were markedly less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”
There are good reasons, though, to begin the conversation before a health crisis strikes, not the least of which relates to a single sad fact of life few of us want to accept: Very few of us will end up like Lois. No matter how healthy and active you believe you are at this moment, at some point in the future your body will break down. And, for most of us, it won’t be a sudden end to things; the vast majority of deaths, Gawande tells us, come after months and years of gradual deterioration. Most of us will at some point lose our ability to live independently before we die. How we face that eventuality will greatly impact the quality of our lives toward the end.
Shirley’s handled it all about as well as can be expected since the stroke. She’d made it clear years ago that she wanted no extraordinary measures used to keep her alive, and we believe that’s why she’s still with us today. When she moved into hospice, she was ready to go and, given Gawande’s research, it’s not surprising that brief vacation from doctors helped her recover her strength enough to settle into her current residence. She’s still ready to go, and we know it. Which makes every gathering — big or small — something to treasure.