ROBERT SIEGEL, HOST:
Margaret Bentley knew what she wanted for the end of her life. If she ever became completely disabled, she didn't want to eat or drink. She would prefer to die. In 1991, the former registered nurse put that in a living will. Several years later, she was diagnosed with Alzheimer's disease. At this point, she can't do anything for herself. Her family wants to honor her wishes, but Ms. Bentley's nursing home refuses. The staff says when they lift a spoon to her mouth, she opens her mouth. This case is unfolding in British Columbia and went before an appeals court today there. Robin Marantz Henig has been following this case and wrote about it for NPR's Shots blog. She's also writing about the subject for The New York Times Magazine. Welcome to the program.
ROBIN MARANTZ HENIG: Hi, Robert.
SIEGEL: This isn't just a dispute between a family and the state, but also between the current Margaret Bentley and the woman who made those directives. It gets to the very nature of the self. Are medical legal systems really up to tackling that distinction?
HENIG: Well, that's what's so interesting about this. The bioethicists are having a field day. There are some who say look, she might have said this when she was compos mentis, but today, she's hungry, and she's the one whose autonomy we have to respect. It's unclear in her case whether she really is hungry or whether she's opening her mouth as a reflex when you bring a spoon to it. The judge in the original court said that she was exhibiting a certain amount of taste because at a certain point, she would close her mouth and open it again for the chocolate pudding.
SIEGEL: But, I mean, the reason that one makes these directives is to provide for the time when we're not compos mentis, when we're not conscious of making the decisions.
SIEGEL: Is the argument to the contrary that we still must be aware of the decision that we made some years ago?
HENIG: Well, it depends on who you're talking about. Certainly, in the states in the U.S. that allow physician-assisted dying, if you are not of sound mind, you are not allowed to ask a physician to help you die. So there's some sort of precedent that we think that you have to currently be able to know what's going to happen if you take a certain action, which is frustrating because you would think that this is exactly the best way to do it. You sort of say when you know who you are and when you're intact, I don't want to live beyond a certain point. What happens now based on the laws that are currently in effect is that somebody who has a diagnosis of Alzheimer's disease, if she doesn't want to become a total vegetable, has to end her life before she actually becomes demented.
SIEGEL: What a conundrum here.
HENIG: It's a terrible conundrum. That's true. And, I mean, the - what the philosophers talk about is something that you alluded to earlier - that Margaret Bentley was one person at one point in her life and a different person now. And so whose decision do you honor more? And so there's a lot of back and forth about that. You know, my personal feeling is that the person you were for the first 80 years of your life is the one whose decision-making power should be honored. But there is this new person who maybe is even happy in this new situation, or at least not as miserable as she might have thought in prospect. So what do you do with that?
SIEGEL: Since your piece posted on the NPR Shots blog, many people have written in to say that they've been in a situation similar to that of the Bentley family. What have you taken away from that response to this story?
HENIG: Well, I really think this is one of the biggest issues that the baby-boom generation is going to face, first with our parents and very soon with us. So I'm not surprised. I think that this is - this is the thorniest kind of an end-of-life decision because there's not a competent individual in there making the decision at that moment. So yes, this is going to come up more and more.
SIEGEL: Robin Marantz Henig, thank you very much for talking with us.
HENIG: My pleasure.
SIEGEL: And her story about the case of Margaret Bentley can be found at the Shots blog at npr.org.
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