The Good Death: A Demonstration

SHE MODELED, FOR THE LIVING, HOW TO DIE WELL

Photo by Rafael Hoyos Weht on Unsplash

I’ve just finished an obituary of sorts for my friend Laurie, who died yesterday afternoon, slipping quietly into an ever-deeper sleep with those she loved best beside her. We should all, eventually, be so lucky.

The way you know you’re dead, in today’s senior living communities, is that your picture goes up on the hall table. Laurie and I laughed about that just last week, when I was saying I’d work hard at writing something elegant to go beside her photo. From somewhere in the ethersphere I am certain she’s getting the last laugh.

Elegance was easy to come by in this case. A decade ago Laurie had shepherded her physician husband through a descent into dementia, managing to keep him at home in their apartment until his own relatively gentle demise. They had raised two daughters and led a full, good life.

One daughter was extremely close to her mother, as was her wife, a particularly beloved daughter-in-law to Laurie.

So the first thing they did, en route to the Good Death, was to talk frankly and in detail about what exactly Laurie wanted. At 91 — precisely the age of this writer — Laurie enjoyed being with friends and family, walking her San Francisco neighborhood, reading and listening to music. She could still do most of these, but recent illnesses were imposing limitations. 

We talked, occasionally, of how she felt her quality of life had diminished. Because of my volunteer work with Medical Aid in Dying, which is legal in our state (and 9 others plus DC,) we talked a good bit about that option — which she said she would choose over any painful & debilitating end. 

A few weeks ago an intestinal issue sent Laurie to the hospital. Surgery would be required, the doctors said; and it would be a high-risk procedure.

No thanks, said Laurie, I think I’d rather go home to die in peace.

Which was exactly what she did. With a hospice bed positioned so she could look out at the distant mountains, a TV set she mostly kept turned off and flowers on the windowsills, she made herself comfortable. There was morphine for pain, but she had almost none.

There’s a name for this way to die: Voluntary Stopping Eating and Drinking (VSED.) The intestinal issue had spelled the end of her eating; stopping drink hastens the process. A popsicle-like swab was by her side to prevent any discomfort from thirst.

For a week, friends stopped by. We’d tell her how much she had meant to us; she’d return the sentiment — but nothing faux or flowery: “We really didn’t know each other that well,” she said to one visitor. “But I remember a funny thing you said not long ago . . .” 

Sometimes, as the days wore on, she would fall asleep mid-sentence. Nobody cared. 

Ten days after her return from the hospital Laurie’s sleep simply deepened and her heart and breathing stopped. Her two beloved daughters were holding her hands.

Death, Dying & the Grey Zone

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Death-and-dying usually goes with I-don’t-want-to-talk about-it.

Katy Butler wants us to talk about it. She worries, though, about the culture of death-denial, and about the lack of language when we do try to talk. How, for instance, do you say “I don’t want any more surgeries,” without its sounding like “I’m giving up”? Or how do you say “She doesn’t want that treatment” without its seeming you don’t want to keep Mom around? Especially when you know what Mom wants, but the doctors don’t?

Butler, author of the acclaimed 2013 memoir of her parents’ dying years Knocking on Heaven’s Door, spoke at a recent meeting of the San Francisco Bay Area Network for End-of-Life Care. Network members – physicians, teachers, counselors and individuals associated with a wide variety of end-of-life organizations – were clearly in tune with the message: death comes, but few acknowledge or prepare for it. It’s that vast majority, those who don’t want to talk about it, who concern Butler and her audience, including this writer.

Knocking on Heaven’s Door details, in graceful prose, how Butler’s highly educated, physically active, devoted parents managed to get caught up in the brutal reality of dying in the U.S. Her father, a decorated veteran of World War II, suffered years of gradual descent, including having a pacemaker put in when that was mainly a cruel prolongation of suffering; her mother suffered in parallel but very different ways as his caregiver. It is all, Butler fervently believes, unnecessary suffering. She quotes her father as he declined:

“I don’t know who I am any more.” Another year or so later: “I’m not going to get better.” And still later, “I’m living too long.”

Butler speaks of this in terms of “the Grey Zone.” Whereas most of us want simple, black-and-white answers – “This pill will fix everything;” “you can expect to live another four to six months” – in truth, the time before dying is the Grey Zone. And whereas the Grey Zone used to be short and swift, today – thanks to modern medicine and technology – it is forever expanding.

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Everyone will enter the Grey Zone sooner or later. You, reader of these words, and I, writer. You may ski into a tree, or get hit by a truck tomorrow, causing your Grey Zone to be little more than a blur; I could have a major stroke or aneurism and be at the crematorium tomorrow. But in all probability, our Grey Zones will come in bits and pieces, and will extend for many months or years. They are likely to include a few hospital stays for broken bones or debilitating illnesses, chemotherapy for cancer, possible time on a ventilator, multiple medications with occasional unpleasant side effects, outpatient and inpatient experiences with doctors we have never seen before and encounters with medical technology yet to come.

Butler advocates shifting our Grey Zones away from the relentless need to prolong life at all costs to the consideration of what really makes life worth living. We would do well, she says, to be aware of when “that space between active living and dying” should shift from Cure to Care: to easing our way from good life into good death.

Butler’s understanding of these issues come from witnessing her father’s long, anguished journey through a Grey Zone of many years and her mother’s steadfast refusal to allow a similar prolonged struggle to mark the end of her own life.

Quite apart from the expanding battles to legalize medically hastened dying, the need to acknowledge the Grey Zone is equally urgent. Most of us would opt to shorten that space between active living and dying, or at the very least to move gracefully from good life into good death.

It can happen, but not without paying attention. Reading Butler’s book, with an eye to how you would like to knock on heaven’s door yourself, is a good way to start.

Because looking realistically ahead makes infinitely more sense than zoning out.