When Do You Say, “No More”?
There’s a trick many of us, maybe all of us, do when we examine difficult information about the future, a kind of sleight-of-mind. Climatologists, when they look at forecasts for the planet; doctors, when they review research for their patients with severe conditions; all of us, when we contemplate the inevitable deaths that await us and the people close to us.
For me, the trick is this: My mind pulls away from my heart, as if I’m disengaging a manual gear shift, placing it in neutral. Then I can temporarily contemplate scenarios that are otherwise difficult to bear. Or impossible.
This is what I do when I think about my father’s future.
In 2014, Dr. Ezekiel Emanuel began an essay in The Atlantic with a number: “seventy-five.” Emanuel, who’s a bioethicist and national health policy expert, continued, “That’s how long I want to live: 75 years.”
Not surprisingly, the piece was controversial.
Emanuel wasn’t saying readers should share his wish. He believed Americans had developed an unhealthy obsession with overcoming mortality, and he wanted them to think about the unintentional choices they were making.
I think this manic desperation to endlessly extend life is misguided and potentially destructive. For many reasons, 75 is a pretty good age to aim to stop.
Emanuel, who’s recently reaffirmed the points in his original essay, was 57 when he wrote it. He was and remains far from suicidal, and he doesn’t believe people should hasten their ends even through medically assisted dying. “I won’t actively end my life,” he wrote.
But I won’t try to prolong it, either. Today, when the doctor recommends a test or treatment, especially one that will extend our lives, it becomes incumbent upon us to give a good reason why we don’t want it. The momentum of medicine and family means we will almost invariably get it.
When Emanuel hits 75, he plans to cease taking several common—and medically recommended—life-prolonging measures.
… At 75 and beyond, I will need a good reason to even visit the doctor and take any medical test or treatment, no matter how routine and painless. And that good reason is not “It will prolong your life.” I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative—not curative—treatments if I am suffering pain or other disability.
Emanuel clarified that if he had a physical accident—if he broke a hip or a leg in a skiing accident—he’d definitely seek medical interventions. But after he reaches the age of 65, he will stop scheduling colonoscopies. At 75, he plans to say no to antibiotics. He expects to refuse any treatments for cancer, other than for comfort. He will no longer submit to a cardiac stress test. If offered, he plans to refuse a defibrillator implant, pacemaker, heart valve replacements or heart bypass surgery.
Ideally, most of us would lead relatively healthy, active lives until right before we die.
A theory proposed in the 1980s—dubbed the “compression of morbidity”—postulated that, as life expectancy lengthened, so would our healthy years. If scientific and social gains could increase our life expectancy, they should also increase the length of time before chronic diseases set in and before the process of aging manifested.
And if the changes in health-span could outpace those in life span, our years of morbidity—of suffering from a medical condition—could be compressed into a small slot of time just before we die.
But some research suggests the opposite is happening. Emanuel refers to a 2010 study by Eileen Crimmins and Hiram Beltrán-Sánchez, who conclude that Americans are now living fewer healthy years. “We have always assumed that each generation will be healthier and longer lived than the prior one,” the researchers write.
The growing problem of lifelong obesity and increases in hypertension and high cholesterol among cohorts reaching old age are a sign that health may not be improving with each generation
Last fall, it was time for my dad’s annual shots. Another Covid-19 vaccine booster. A flu shot. Maybe a pneumonia vaccine. When my brother and I started to call the pharmacy, I said something like, Wait a minute. Are we sure?
What I meant was, was there a chance any of these routine health measures would artificially extend our ninety-year-old father’s life? And, if so, shouldn’t we think about whether—or when—that was no longer a good idea?
Dementia is a progressive, terminal disease with no cure. In the past, people with the condition most often died from falls or urinary tract infections or respiratory illness—causes associated with the disease, but not the disease itself. Now, with medical care improvements, more people who have dementia die from the brain disease itself, according to an article in Discover magazine.
Those who survive long enough gradually lose the ability to walk, to talk, to recognize friends, family, anyone. They lose the ability to swallow, and maybe the ability to recognize food when it’s placed in their mouths.
I don’t want to be too grim here because, when you examine the immediate cause of death as opposed to the underlying cause, there’s a list like this for many terminal conditions. A person with terminal cancer, for instance, may ultimately die from infection or hemorrhaging or some other immediate cause.
It’s just that, with dementia, the process is more likely to be drawn-out and torturous. People with dementia are also likely to end their lives in a nursing home, according to a Harvard Medical School report:
Between 30 and 40 percent of adults across the nation with dementia reside in nursing homes, and approximately 70 percent of Americans with dementia will die in a nursing home.
“I think for a lot of people, we go to great effort to provide them with miserable deaths.” –Tia Powell, author of Dementia Reimagined
My dad’s quality of life has certainly been diminished by his dementia. There are so many things he can no longer do: He can’t read more than a paragraph or two at a time. He can’t drive. He can’t make himself a meal. Without assistance, I don’t think he can buy himself a meal—or figure out what to wear, remember to brush his teeth or shower. Often, he can barely talk to people, because he can’t remember words or follow conversations easily.
But he still leads a pretty good life. He swims, goes for walks, plays the piano. He’s often surrounded by friends and family. He has joyful experiences, delighting in other people, in animals, in listening to music.
If we asked him, my guess is he’d say he wants to live as long as he possibly can, though he can no longer imagine the future, so has no way to understand the potential suffering associated with his condition.
And it’s the future I worry about.
Emanuel’s essay has been criticized as ageist and biased against people with disabilities. His view of what it is to lead a meaningful life seems narrow to me, and seventy-five seems a little arbitrary. I know many vigorous, wonderful people who are in their seventies and older, and I’m grateful they’re alive. (Emanuel acknowledges this idea but says the outliers don’t undermine his argument.)
Still, I find one of Emanuel’s main points appealing: Our medical establishment, and our very culture, tend to push interventions late in life that risk artificially raising our chances of unnecessary suffering. Given that, shouldn’t we at least consider our individual preferences about life quality versus quantity, and act and plan accordingly?
In a 2019 interview on NPR’s Fresh Air, writer Tia Powell tells a story about her grandmother, who had dementia. When a doctor told her six adult children that her heart was blocked and she needed a pacemaker, they agreed.
Later, all six regretted that decision.
“I think she was 97 when she died,” says Powell, the author of a book about dementia. “Her last years were pretty miserable…. It was basically extending a process of dying and of misery that was hard to treat.”
Powell says cardiologists too often push pacemakers because they’re focused on a single issue: They believe patients shouldn’t have to die from heart blockages. The problem with that approach is it doesn’t take into account the big picture, Powell says in the Fresh Air interview:
… if you’re going to die and somebody says, you shouldn’t die of this, who are they to say that? Maybe the thisthat’s on offer is way better than the that that’s facing you in the future. And that’s really an issue with dementia. It’s not, frankly, a great way to die.
It’s a dark place to start imagining different possible deaths for anyone, and even darker when part of the scenario is your own potential role or control over that. My siblings and I have based our approach on family discussion, one that we’re always recalibrating, re-hashing.
For my father’s annual shots, my brother and I thought about what we knew about various diseases. In general, Covid-19 deaths are not easy. Given a choice, that’s not what we’d wish for anyone.
Just as importantly, we wanted to protect other people. As the contentious debates about Covid-19 vaccines reminded us, if you contract a dangerous and contagious disease, you put others at risk.
There’s also this: our approach to our father’s health is complicated, because he’s no longer capable of taking care of himself or of making a rational decision about whether to be more or less aggressive in his health care.
We went ahead with the Covid-19 booster and the flu shot.
And we’ve agreed that we’ll keep asking questions.
What you said in this letter is what I believe in. I'm 83 and mostly healthy. However last month after having an UTI, I got a kidney stone. It passed after a month of suffering. In the meantime it was discovered that I have a-fib. Am taking blood thinner and metoprolol for irregular heart beat. I'm doing fine now.