Talk about death with your loved ones before you think you have to

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Our way of dying is not sustainable.

BY MARINA SCHAUFFLER

“I could see that they were slowly leaving the sphere of TV commercial old age… and moving into the part of old age that was scarier, harder to talk about, and not part of this culture.”

– Roz Chast, “Can’t We Talk about Something More Pleasant?”

A chalkboard "bucket list" stirred imaginations and got people talking at an Indianapolis festival designed to help make conversations about death easier.

A chalkboard “bucket list” stirred imaginations and got people talking at an Indianapolis festival designed to help make conversations about death easier.

It’s a topic we avoid at all costs: the inevitable descent each person makes from that American ideal of youthful independence to frailty and death. Fearful of following that path ourselves, we resist discussing it – even as loved ones venture closer to that inescapable end.

In recent decades, American culture has opened to permit candid conversations about many topics once off the table – from gender identity and racism to addictions and disorders. But when it comes to end-of-life discussions, there’s still strong resistance. Those who seek to live sustainably can find that challenge enough, without facing what it might mean to die with integrity.

Many societal undercurrents reinforce our resistance. With urbanization, ties to the natural world have grown tenuous and we witness the life-death cycle less frequently. When we do, it’s often on screen – far removed from our daily reality.

Countries like Mexico and Poland hold collective rituals that help normalize the inevitability of death, but Americans prefer Memorial Day picnics, parades and summer-season sales. Our commercial culture worships youth and novelty, while portraying old age as a protracted talk with your doctor about pharmaceuticals.

Advances in medicine lend hope that we might keep death at bay, an illusion many doctors reinforce. “Our decision making in medicine has failed so spectacularly,” surgeon Atul Gawande writes in Being Mortal, “that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”

Our cultural resistance to discuss life’s end causes widespread suffering for the dying, depriving them of what Gawande calls the right “to end their stories on their own terms.” Pressured both by medical personnel and by family members, patients can spend their final weeks in Intensive Care Units, swathed in tubes and surrounded by strangers. Even though 80 percent of Americans would prefer to die at home, only about 20 percent today do.

Denying dying people the chance to take what control they can has far-reaching repercussions for family members – who can struggle for years with the death’s emotional, spiritual and financial aftershocks. Many of them experience a sense of lingering regret over lost opportunities for connection in the final days, and some cope with debilitating medical bills. A quarter of households in one study had medical expenses in the five years before a member’s death that exceeded their total household assets.

Costly late-life medical interventions drive up health care costs, straining the budgets of families, businesses and government. Roughly 30 percent of all Medicare expenditures go to the 5 percent of patients in their last year of life.

We cannot afford to continue along this path; it is not sustainable by any measure.

Fortunately, the culture is starting to shift – aided by Gawande’s book and resources like The Conversation Project and Death over Dinner. These efforts address the gap between the 90 percent of Americans who acknowledge they should have end-of-life discussions and the meager third who do.

Columnist and author Ellen Goodman was among those who launched The Conversation Project in 2012 after realizing she’d never had those crucial value discussions with her own mother while there was time. People postpone these talks, Goodman told me, “feeling it’s ‘too soon.’ What we’ve learned is it’s always too soon until it’s too late.” The opportunity is lost once someone lands in the Emergency Room, ICU or Alzheimer’s care facility.

People envision end-of-life talks primarily with elderly parents, but they should occur among all adults. Despite initial reservations, many people find that these dialogues lead to warm exchanges and what Goodman calls the sharing of “deep family stories.”

Even in close-knit families, the responses of loved ones may come as a surprise. People often express desires “besides simply prolonging their lives,” Gawande writes, prioritizing concerns like avoiding suffering, bonding with family and friends, and remaining mentally alert. Contemplating the end of life can help us clarify what matters most – not just when time becomes short, but every day.

Ideally, these heartfelt exchanges lead to completing paperwork that can help guide family members and medical practitioners. The Conversation Project recommends that individuals authorize a medical decision-maker; complete an Advanced Health Care Directive (templates can be found online), and discuss end-of-life wishes with their health care provider. Medicare recently began compensating doctors for time spent having these discussions. Those who are at a late-life stage may also wish to complete and post a Do Not Resuscitate (DNR) form.

One of the many benefits to initiating these dialogues early, Goodman notes, is that it can help family members agree to back the patient’s wishes. Absent that consensus, relatives can unwittingly make the process harder for a dying person through their own resistance to letting go. Roz Chast captures this poignant dynamic in her graphic memoir, portraying how her mother – facing her husband’s impending death – challenged the “defeatist attitude” of hospice and asserted “I told Daddy he was coming with me to 100 if I had to drag him kicking and screaming!”

The prospect of death – whether our own or that of a loved one – is inescapably fraught with fears and uncertainties. It’s easy to see how we’ve drifted into a kind of denial, and slipped into medically managing the end of life despite crippling personal and societal costs.

We owe it to ourselves and each other, though, to discuss what matters most in our waning days. Having that dialogue with loved ones could help us remain authors of our lives through the closing chapters.

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