That means figuring out what we want out of the end of our lives and acknowledging that the medical establishment does a pretty lousy job at preparing people to die.
Photo by Tim Llewellyn
A few weeks ago, I interviewed mortician Caitlin Doughty, and she talked about how bad end-of-life care is for many (usually elderly) Americans. One of the people whose work she cited on this topic in her book was Dr. Atul Gawande, a Boston surgeon who is also a professor at Harvard Medical School and a staff writer at The New Yorker.
It just so happens he recently published a new book on the subject called Being Mortal: Medicine and What Matters in the End. The questions that he grapples with are quite challenging: How do we handle decisions about end-of-life care? Is more treatment always the answer? What is the appropriate role of family members in the process? Basically, how should we die? I reached out to Gawande to talk about those questions, because I love talking about death. Enjoy!
VICE: What are your thoughts on the case of Brittany Maynard, the 29-year-old with the brain tumor who moved to Oregon from California in order to take advantage of the state's euthanasia law?
Atul Gawande: What strikes me is that the health-care system has failed her. Because the biggest reason she's wanting to have that option to take her own life is because she fears that her suffering will become so unbearable that she will not find the time that she has left worth living. And if we in the medical profession are so obtuse and neglectful that we could not assure a young woman with a brain tumor that her needs and concerns for suffering are going to be met... then you know, I can't blame her for saying, "I need to have my own option out of this because there ain't nobody else who's going to help me." That's the serious concern I have.
Do you think too often many well-meaning people might see or discuss legalizing assisted suicide as a panacea for the problems with end-of-life care when we should be looking for more thorough solutions?
Well, I worry about the danger. When I hear about the idea that our aim is a good death, I think that misses a core part of the picture. I'm not sure that what I see is that people are "death-obsessed." I think we have to be vigilant for the possibility that people see people who are old as severely frail or disabled.
Zeke Emanuel wrote that article about how he didn't want to live past 75. The core element was the idea that "at 75 my contributions to the world will not be what I'm able to contribute now. I don't want to kill myself at that point, but I'm no longer gonna try to fight for time after that."
Do you think Zeke Emanuel might not know what he'll want at 75?
Yes. In that essay, he didn't leave room for recognizing that that change is extremely common, and that he's very likely to make that change. He may not, but it's very likely he will.
In your book, you talk about a gray area between whether someone is "dying" and not. Could you give an example?
There was a woman who had had a heart attack. The heart attack cut the blood supply to her bowel, and so she had gangrene of the bowel. So she ended up having a stent put in her heart. I took her to surgery and removed a large section of her bowel. She had an open abdomen that literally wasn't closed. She was on a ventilator, her leg had turned gangrene, and I was going to her sisters to say, "Should we amputate her leg as well?" And they said, "Is she dying?" Well, how do you answer that? On the one level, she has a potentially fatal condition, but I have no idea whether she could make it through or not, even though there's a high likelihood she could die. And we stretched out how long this period of existence can happen. Is someone who has a Stage IV advanced cancer "dying" when that process might take three years?
How should a doctor transition from "fixing" someone to ensuring the most comfortable end of life?
I wrote about the colleague whose father said, "If I can watch football on television and eat chocolate ice cream, that's good enough for me." It's like the best living will ever, because I know now as a doctor what I'm fighting for and what I'm making sure I don't sacrifice in this person's life. And the irony is that you're not really "switching modes." It means you're fighting for every inch of ground you can get for them as long as you don't take away that ability.
One thing I didn't find in your book was a Holy Grail–type example of a place that you feel does a great overall job of end-of-life care. It doesn't seem like you think it's out there just yet.
No, I went looking for the Holy Grail, and I show lots of success stories and they come in so many different flavors. There's the nursing home that has the dogs, the cats, and the birds. There's the people in senior-living apartments where it was made possible for people to continue living in apartments no matter what and never have to end up in a nursing home at all. Or the assisted-living place where it's attached to a school and the elderly teach in a school and the kids come out of school and they help take care of the elderly.
There's a lot of different pathways. But the core element is the recognition that people have much more that they live for than just being healthy and safe. We can be curious about those things, and we can define them and help make them possible. And it generally isn't about money. It's mostly about imagination that there is a life worth living and fostering even though you might be disabled, even though you might be frail, even though your memory might be going, or you might be within weeks of the end of your life.
If you could do one thing to fix the system, what would it be?
I'm getting to do what I would do. I think power is about what the public insists that the system do, and then others have to respond. The president can't make it so we have a culture that actually values the priorities that people have for the end of their lives, or for when their quality of life starts to be affected.
We could pass laws that say, "Damnit, everybody needs to make this their priority and this has got to be important to people's lives!" But it wouldn't change anything.
Follow Simon Davis on Twitter.