There have been a couple of important developments in the past couple of weeks suggesting that maybe, just maybe, we can finally have a long-sought rational conversation about end-of-life care.
First, the influential Institute of Medicine issued a 507-page report recommending major reforms for how end-of-life care is provided. And then Ezekiel Emanuel, a well-known bioethicist and former Obama adviser, explained why he wants to die at the not-so-old age of 75. Emanuel's provocative essay has inspired a range of reactions, including on this blog, where University of Chicago professor Harold Pollack made his case for living longer.
Less discussed in the past couple of weeks is where Americans' attitudes on death and dying stand — and how they've been changing. A couple of Pew Research Center polls in the past year provide useful perspective on this topic.
For starters, Emanuel's goal to live to 75 solidly puts him in the minority of Americans, according to an August 2013 Pew Research Center poll. Just 14 percent said their ideal life span is 78 or younger, with the strongest support for this view coming from the youngest grouping of adults — "to whom old age may seem far away," as Pew described the finding.About two-thirds of Americans agree that there are legitimate reasons why a patient should be allowed to die, according to another Pew poll released last November. Meanwhile, a minority (31 percent) said medical professionals should do everything possible to keep patients alive, which is up 16 percentage points since Pew first polled on this topic in 1990. Pew said the increase is the result of more people removing themselves from the undecided category. Older adults, though, are more likely to say patients have a right to die.
As Emanuel explains in his essay, he's not advocating for suicide or euthanasia at 75. But at that age, he isn't planning proactive steps to extend his life, such as screenings, preventive tests or curative treatments. Among the reasons Emanuel offers for his choice, he discusses the likelihood of living longer with greater disability, as well as becoming a burden on his family.
Emanuel's views here doesn't garner much public support. About two-thirds (62 percent) in the most recent Pew survey said patients have a right to end their lives if they're suffering from great pain with no hope for improvement. Far fewer people said patients have a similar right if they think living has become a burden (38 percent), or if they're an "extremely heavy burden" on family (32 percent). Again, Emanuel specifically opposes physician-assisted suicide, but these findings could also speak to why his essay has touched a nerve.
A plan for death is a profoundly personal decision, yet one of the big takeaways from the hefty IOM report this month is that plenty of people still haven't thought these issues through. And that hasn't changed much in the past 10 years, even after the case of Terry Schiavo and the "death panels" controversy brought end-of-life care to the forefront.
The most recent Pew survey found that just 37 percent of adults said they've given "a great deal of thought" to the kind of care they'd like to receive at the end of their lives, which is pretty much the same rate as 2005. Just about one-third said they've put their wishes into writing, which also hasn't changed in nearly a decade. Even among people 75 and older, about 22 percent said they don't have anything formal in writing or even discussed their care preferences.
So even if you don't agree with Emanuel's thinking, maybe his perspective in the very least can get us thinking about what we might want for ourselves.