A Graceful Exit

How can we break the silence about what happens when we’re dying? Photo by Andrew Alderson

Yes! Magazine

I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”

I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.

As with the whole wheat and vitamins, my mother — back in 1990 — was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, there will be 19 million Americans over 85, all at high risk of losing the ability to care for themselves or dwindling away due to organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)

So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.

My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.

The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile — though it was impossible to know if she recognized the person standing in front of her wheelchair — before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.

This cannot be right. This cannot be what we want for our parents — or ourselves.

In Denial

Despite our myriad technological advances, the final stages of life in America still exist as a twilight purgatory where too many people simply suffer and wait, having lost all power to have any effect on the world or their place in it. No wonder we’re loathe to confront this. The Patient Self-Determination Act, passed in 1990, guarantees us the right to take some control over our final days by creating advance directives like the one my mother made me sign, yet fewer than 50 percent of patients have done so. This amazes me.

“We have a death taboo in our country,” says Barbara Coombs Lee, whose advocacy group, Compassion & Choices, pushed Washington and Oregon to pass laws allowing doctors to prescribe life-ending medication for the terminally ill. “Americans act as if death is optional. It’s all tied into a romance with technology, against accepting ourselves as mortal.”

For proof of this, consider that among venture capitalists the cutting edge is no longer computers, but life-extending technologies. Peter Thiel, the 45-year-old who started PayPal and was an early investor in Facebook, has thrown in with a $3.5 million bet on the famed anti-aging researcher Aubrey de Grey. And Thiel is no outlier. As of 2010, about 400 companies were working to reverse human aging.

Talking About Death

The reason for this chronic avoidance of aging and death is not simply that American culture equals youth culture. It’s that we grow up trained to believe in self-determination — which is precisely what’s lost with our current approach to the process of dying. But what if every time you saw your doctor for a checkup there were a few basic questions to answer about your wishes for the end of life? What if planning for those days became customary — a discussion of personal preferences — instead of paralyzing?

Dr. Peter Saul, a physician in Australia, endeavored to test this approach by interviewing hundreds of dying patients at Newcastle Hospital in Melbourne about the way they’d like to handle their lead-up to death — and how they felt discussing it. He was startled to find that 98 percent said they loved being asked. They appreciated the chance to think out loud on the subject. They thought it should be standard practice.

“Most people don’t want to be dead, but I think most people want to have some control over how their dying process proceeds,” Saul says in his widely viewed TED lecture “Let’s Talk About Dying.”

Nevertheless, when his study was complete, Newcastle went back to business as usual, studiously ignoring the elephant in the room, acting as if these patients would eventually stand up and walk out, whistling.

“The cultural issue had reasserted itself,” Saul says drily.