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.
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.