January 30, 2013 -- Dr. Ira Byock, a professor of medicine at Dartmouth College and writer on end-of-life and palliative care issues, talked to a packed house at the Oregon Humanities Center in downtown Portland about an unlikely topic for Friday night entertainment: death.
Byock just published a book, The Best Care Possible, of which he signed copies afterward – but admitted he hadn't actually gone on tour to sell it, saying audience members are welcome to borrow it from friends or the library. “It's a little awkward, because I didn't actually come here to sell this book,” Byock said. “I wrote this book to give this talk. I've learned that if you don't write a book, nobody asks you to come speak.”
Claiming that for the first time in human history, there will soon be more old people than young people on the planet, Byock is trying to break the taboo around talking about aging, chronic illness and end-of-life care.
Byock, whose Portland talk was preceded by a speaking engagement in Eugene, noted that he has a grown daughter who lives in Portland. Calling himself a “proud political progressive” whose positions on many health issues – including abortion and gun control – are in lockstep with many in the Portland area, Byock's position on Death With Dignity stands in stark contrast with many of his political allies.
Byock has written and spoken in opposition to Oregon's law and has opposed it elsewhere, saying it's not a physician's role to prescribe life-ending medications. Except to say he knew there were people “lining up” to disagree with him, Byock didn't mention Death With Dignity in his lecture, but a few who stood up during the question and answer session afterward did.
Gary said his mother had lost her will to live near the end of her life, while she was dying of cancer, said, “We in Oregon think a very small subset of people should be able to get a prescription to go to the big sleep. Would you argue with that?”
“I think that suicide is not medical practice. I'm not here in any political way whatsoever. I don't think physicians – who have documented deficiencies in the way we're trained and the way we practice – should make that decision,” said Byock, adding that it’s more difficult for patients to access medical marijuana or hospice care than prescriptions to lethal medications.
John R. Wish, who wrote a guest editorial for The Lund Report last fall about his diagnosis of bladder cancer and his end-of-life choices, said, “As a resident of Oregon, marijuana is easy to get. Hospice care is easy to get. The prescription [for lethal medication] is not. Where did you get your information?”
Wish was cut off by an event facilitator, and his question was not answered, but according to the 2012 Death With Dignity Act report, 115 patients in Oregon received lethal prescriptions last year under the act, the highest number to do so since the law was implemented in 1997. By contrast, numbers released by the state say 54,280 Oregon residents hold medical marijuana cards, and according to the Oregon Hospice Association, 12,176 new patients were admitted into hospice care in Oregon in 2010.
Speaking with The Lund Report after the event, Wish said that refusing to write lethal prescriptions is Byock's prerogative, as it was his own doctor's prerogative to make the same decision while discussing the possible outcomes of his cancer diagnosis – but that it’s also his right as a patient to seek what he considers appropriate care.
Wish added that he appreciated Byock's calling attention to a topic that’s not discussed often enough, and his call to keep dying patients comfortable and provide appropriate palliative care.
“I think it’s an important topic. It is the last taboo. We all die, can expect to die, but we don't talk about it.”
During his lecture, Byock said most Americans aren't receiving the kind of end-of-life care they would prefer, with an overwhelming majority saying they’d like to die at home, while most people actually end up dying in hospitals or nursing homes.
One problem, Byock said, is that Americans think of dying in solely medical terms, instead of also looking at a medical diagnosis as a time to get one's affairs in order and improve one's relationships, in addition to seeking out the most comfortable and individually appropriate medical plan. He told the story of a doctor friend who learned he had late-stage cancer and, among other things, contacted his ex-wife and the children from his first marriage, from whom he had been estranged for years.
“The fundamental nature of serious illness and dying is only partly medical,” Byock said. “It is fundamentally, profoundly personal for patients and their families.”
Another problem is our culture's emphasis on positive thinking deepens the taboo around talking about death, with families and providers sometimes telling aging patients they’re being too negative if they start talking about their own death.
As an example of how the taboo around talking about death has played out on the political stage, Byock talked about the “death panel” controversy leading up to the passage of the Affordable Care Act. Some leading Republican politicians and conservative pundits claimed that a provision in the act for end-of-life care actually empowered the federal government to decide who would live and who would die.
“This was purely a political ploy. They didn't believe it,” Byock said, noting that he had called out Newt Gingrinch's reversal of position on end-of-life care at an event in New Hampshire, where he lives.
Because of the culture war, he said, politicians are afraid to talk about end-of-life care, and some social conservatives have accused him of supporting “covert euthanasia” because he’s talking about these issues.
He said he hoped the tide would turn the way it did in the 1960s, 1970s and 1980s around childbirth and prenatal care, when baby boomers began a consumer movement to change cultural and medical norms around women's health. As a result, birthing outcomes and prenatal care have vastly improved, and he hopes a similar consumer-driven movement would shed more light on end-of-life issues and improve the options available to people as they age and die.
“Generations in the future are going to look back and either say, 'Why didn't we fix this?' or thank us,” Byock said.
Image courtesy of the National Institutes of Health (public domain).
