My mother was in her mid-50s when the doctor told her, in an all-too-matter-of-fact way, that she had a terminal illness. Her sole response to this devastating news was to ask for a pill to help her sleep. That stoicism set the tone for how we dealt with her dying, which is to say, we didn’t. We focused instead on the details of the treatment that kept her alive another few years.
Mom died in a hospital, hooked up to machines, with her family making the difficult decision about if and when to sign a “do not resuscitate” order.
It was not an ideal death, but it was - and is - typical.
Dr. Ira Byock wants to change that. He and the others who founded the pioneering Missoula Demonstration Project in the 1990s are the reason many Missoulians have made thoughtful decisions about the end of their lives, and have filled out advance directives to make sure those decisions are carried out. Byock is now director of Palliative Medicine at Dartmouth-Hitchcock Medical Center and teaches at Dartmouth Medical School. He’s a leading advocate and national spokesman for better care for seriously ill people, which he outlines in his latest book “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.”
On a recent visit to Missoula, we talked about how medical advances have simultaneously prolonged life - and made dying a lot harder.
“Inadvertently, without any ill intention, in fact for the very good reasons that we’ve helped people live through diseases and conditions that would have killed them, “Byock said. “But as a culture, and as a society, we haven’t figured out how to help people die well.”
It wasn’t that long ago that appendicitis or heart disease would have guaranteed a quick death. Thankfully those days are gone.
“But we haven’t yet made one person immortal,” said Byock. “And what ends up happening is that in our prowess at treating disease and helping people live longer, we’ve really invented chronic illness. And people now live for many months and often years, accumulating what’s now been called the ‘burden of disease’ - for quite awhile living well, but … there comes a time when more treatment … does not equal better care.”
What it does equal is a burgeoning population of old people needing quality care that may increasingly be unavailable.
“Seventy-eight million boomers are aging,” Byock said. “The worst thing people can imagine is going into a nursing home. Let me tell you, the nursing homes of tomorrow are going to make the nursing homes of today look like luxury resorts.”
Byock believes the time is up for postponing the tough decisions that can lead to dying well.
“Life is sweet, and people want to live,” said Byock. “People with chronic illness, first and foremost, don’t want to be dead. And we doctors don’t want the patients we care for to die. When someone we love is seriously ill, the worst thing we can imagine is that they might die. I know there are worse things than having someone you love die - most profoundly, having that person die badly.”
And Byock thinks there is widespread agreement about what dying well means - competent medical care, informed discussion of the burdens and risks of treatment, family and grief support and most importantly, control over the process. He says we’ve been pinned down by the culture war too long, and that there are only two areas of real disagreement: the role of religion in end-of-life care, and whether physician-assisted suicide should be legalized.
“If you set aside those two issues - in fact, agree to continue to argue about those issues - we could actually dramatically advance care for seriously ill people, and support for their loved ones, in just a few years.”
Byock believes the same generation that made sure childbirth was not primarily a medical event but a personal process, can do the same thing with dying.
“Our loved ones need and deserve expert medical attention,” said Byock. “But that doesn’t define the experience of dying as primarily medical. It is primarily personal, and we need to take this back. We have the technology, we have the knowledge - what we haven’t been able to do is have the civil discussion to move in this direction.”
I sure wish I’d had that discussion with my mom.
Sally Mauk is news director at Montana Public Radio/KUFM in Missoula.