Welcome to Ban Week, in which Splinter writers will build a case for burning it all down.
My mother is getting into her late sixties and she is fantastic at the whole rambunctiously aging thing: Semi-retired, she’s a master Bridge player and spends most of the year in state parks, living out of a small trailer she bought second-hand in Tennessee. The woman gets around. Her health is intact. But someday, hopefully many years from now, that won’t be true. And with any luck her home state will have passed a Death with Dignity law by then, so I won’t go to prison for helping her die.
I trust my mother when she says she doesn’t want to live for years of her life infirm, in a nursing home, being prodded by doctors. And she knows what’s she’s talking about: She’s well-acquainted with the prolonged suffering of an exit way too long delayed, having had the bad luck of managing a few deaths.
When my father found out he had a couple of months to live after a decade of poor health, we liquidated his retirement savings and spent it on a vacation. (A short one, between chemo treatments.) When another live-in lover fell sick years later, she cared for him from the diagnosis all the way to the arrangement of his short hospice stay.
By the time her own father had the stroke that would leave him frail and confused, she was the one arguing, clearly through immense pain, with the Baptist side of the family about radical life-saving techniques. But my grandfather hadn’t left instructions for such tricky questions in his will, and the man who’d spent his entire life farming was held for the last few years of his life in a fluorescent facility, bitter and afraid, telling his family he’d been seeing people who weren’t really there.
In part, I’m here to propose we ban nursing homes, which are getting more expensive and increasingly privatized, yet no more humane. Even now there aren’t enough of them to accommodate the tidal wave of elderly Americans who will soon need constant medical care. But more importantly, I’m here to make an argument for swallowing a hard truth: We don’t have the resources to live to 100, and a lot of people shouldn’t. Talk to your parents about their end-of-life plan. Consider helping them die, when and if they’re ready. Really, you can do it. It’ll be okay.
Since its founding the pro-life movement has lobbied for the unconditional preservation of life from “womb to tomb”: The very first edition of the National Right to Life newspaper, in 1973, featured four articles denouncing what it called “mercy killings.” But for all the causes the liberal opposition has managed to fold into its secular-humanist slide deck, assisted suicide has proven too messy, too trivial, or simply too uncomfortable to wrestle with on a national scale. I will be devastated when my mother ages to the point where we will need to confront this, but indulging my own fear of living in a world without her feels selfish.
The philosopher Simon Critchley, who wrote a book about suicide, has a nice bit about this: “Death and suicide are still things surrounded in silence, or just a kind of fake seriousness,” he told Vice. “It’s a profound social problem.”
Today, the right to choose death if you’re mentally competent and terminally ill is legal in five states, as well as the District of Columbia. In September, a New York appeals declined to see a lawsuit that could have made this state the sixth—a decision aided by a coalition of religious institutions, who lobbied aggressively and promoted touching stories of “beautiful and holy deaths.”
I mention this history because the actual moment when death comes for us is almost never beautiful or holy: it is catheterized, bedridden, frightening. Just look at the chasm between the 80 percent of Americans say they want to die at home, and the 20 percent who do. I mention the religious origins of the anti-euthanasia movement because we should also admit how much of our squeamishness about aid-in-dying laws is about someone else’s idea of sin. And because while brave young white ladies taken by illness too soon are the engines that typically catapult right-to-die laws into the news, Brittany Maynard is only the most photogenic candidate for euthanasia—certainly not the most logical.
Right now, the oldest boomers are in their seventies. Over the next few decades, as the 75 million members of that generation (our parents) consider how to live out the rest of their lives, they will be forced to navigate an expensive, uncomfortable, largely for-profit network of nursing homes and hospice centers, notoriously tragic clearinghouses for people just well enough not to take up a hospital bed.
In a recent study commissioned by the bipartisan think tank SCAN, researchers estimated the number of Americans who will require long-term medical support will more than double by 2050: from 12 million in 2000 to 27 million. Home health care and nursing homes, plagued by mismanagement and a lack of oversight, are so expensive that U.S. Today recently ran an article asking whether living on a cruise ship was cheaper than assisted living. The answer is probably yes: The median cost of 12 months in a single room in a private facility approached $100,000 this year.
Our parents don’t have that kind of money, and neither do we, the first generation in many to be financially worse off than the one before. Is your leased apartment ready to be outfitted with a motorized chair-lift? Are you going to have the savings to drop on a high-end home health aide? And yes, there’s one version of this argument that involves better social safety nets. But even under full communism, spending your old age immobile, senile, and repeatedly hospitalized would probably still suck.
Sometimes we do hear stories about aging people who tap out before their absolute last rattling chance: There was a lovely, heartbreaking one about an academic with Alzheimer’s a few years ago. She planned to go once her mental capacities failed her, and she did, drinking Nembutal in an outfit of her choosing surrounded by a “loving net” of family and friends. In the days before she drank the poison, she attended a celebration of her own life.
Peter Levitan, an advertising exec, has calculated that he can live comfortably to the age of 85 with the savings he’s accrued. He told me his research showed a “helium hood” is the best way to go. “The deeper people are into seeing the actual effect of aging, financially, physically,” he says, “the more they understand; the less they want to die broke or in pain.”
Jessica Nutik, a critical care doctor who has written extensively on aid-in-dying practices and the uncomfortable business of saving lives at all cost, refers to the late-stage cycle of hospital visits as the “end-of-life conveyer belt.” In her book Extreme Measures and numerous op-eds, she wrestles with the fundamental quality vs. quantity question, from the perspective of someone with the medical technology and skill to essentially prolong suffering.
“Many of the patients I have cared for at the end of their lives had no idea they were dying,” she writes. “The reasons for this are complex and varied—among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph over death.”
In her writing Nutik poses some of the challenges that would attend a more robust conversation around aid-in-dying: that lower-income families would need equal access to cohesive and high-quality consultation, that talking to our parents about their deaths and our own would have to start early, before we are “too weak and disabled to express preference.” This is hard and counterintuitive stuff. But it’s better than pretending none of these moments will come for us, or that our material circumstances will change the second it’s our turn to care for the people who raised us.
Recently, I had my own brush with the end-of-life conveyer belt: I got very sick and nearly died. Like Nutik’s patients I had no idea what was happening to me, and for some time earlier this year I was stuck in a hospital bed, terrified, drugged, catheterized, and unable to breathe without help. I was too weak for awhile after to read or even speak much; my life was measured by nurses turning me over in bed and short, exhausting visits from friends straining themselves to appear cheerful. I was very lucky. I am young, and I got better. But the idea of spending years of my life like that scares me as much, if not more, than a swift and self-determined death.
For more news and opinions that get under your skin, follow us on Facebook.