Health Care
12:37 pm
Thu July 25, 2013

For Bioethicist With Ailing Spouse, End-Of-Life Issues Hit Home

Originally published on Thu July 25, 2013 3:14 pm

After writing books and essays about end-of-life issues, and advocating for the right to die, bioethicist Margaret Battin is wrestling with the issue in her own family. Her husband, Brooke Hopkins, an English professor at the University of Utah, where she also teaches, broke his neck in a bicycle accident in 2008, leaving him with quadriplegia and dependent on life support technology. In order to breathe, he requires a ventilator some of the time and a diaphragmatic pacer all the time. He receives his nutrition through a feeding tube.

Hopkins' living will gives him the right to decline this technology, and although he's chosen to keep living, there have been times he's told his wife he wants to die, and she's had to decide how literally to interpret his words.

In her academic life, Battin has also had to reflect on the positions she's taken in the past to see if she still believes in them. She and her husband are in their early 70s. She's a distinguished professor of philosophy and still teaches full time. When Hopkins is doing well, and not suffering from one of the many infections that have plagued him since the accident, he's able to do some teaching from his home, talk with friends who come to visit, go in his wheelchair on walks with his wife and even occasionally get taken to a concert or museum.

Battin and Hopkins were profiled in the cover story of last Sunday's New York Times Magazine. Battin tells Fresh Air's Terry Gross about what happened right after the accident, and the responsibility of deciding if someone is genuine in their wish to die.


Interview Highlights

On whether, post-accident, she and her husband discussed if he wanted to live or die

"It's odd ... that we didn't have that conversation. At least, I don't recall that conversation. I think it's because in those early days you are so intent on survival. He had had quite a respiratory infection at the time of the accident, which he had gotten campaigning during the 2008 election just prior to that. So the probability of him even surviving the accident, or the immediate period afterward, wasn't particularly good. Our efforts, his and mine, and everybody else's were focused on survival: Can he pull through these respiratory problems? Once those were a little more stabilized and he was able to communicate, there's a whole new phenomenon, and that's the ... enormous expression of love and affection and ... concern from family members, friends, people you haven't seen for ... five years, this overwhelming involving and concern by other people. ...

"So your sense of whether you want to continue or not ... your circumstances are so altered, and altered by this phenomenon that doesn't occur for most people in their ordinary lives; you don't have all of your entire family and your entire range of friends all showering you with love all at once. That's quite heady in a way. It's quite wonderful. ... You might even say it's sublime and it's extraordinary. That made a huge amount of difference at the beginning. ...

"At the beginning we had been told that the paralysis, initial paralysis, would last five to six weeks anyway, and only after that would you have some sense of realistic prognosis. So, while you worry about it, you ... knew that there was no point in thinking about it until after this period. Would he be able to get up and walk away eventually? Well, maybe. That's the kind of thing you can't tell. ... So such a choice would've been premature. Also, walking isn't the only thing in the world. So one begins to recognize that one will begin thinking about how to adapt to a very changed situation."

On the responsibility of deciding if someone is genuine in their wish to die

"I think you have to take it seriously. That doesn't mean that because he says, 'I want to die right now,' that you have to marshal action about it. ...

"It's not easy, I can tell you that. It doesn't diminish in any way my belief that people — my belief and firmly considered position that people ought to be able, ought to be legally protected, legally empowered to control the character of their own deaths. That is, I do favor legalization of Death with Dignity laws, but that doesn't mean that these decisions are always easy. There [are] some differences. Brooke is not terminally ill, in any standard sense, although his life in certain ways is precarious, his survival. I'm not a physician, I don't pretend to be, so under the Death with Dignity laws it would be the physician that made the determination of whether ceding to this request was appropriate or not. ... If a physician under these laws were to receive a request from a patient and had any doubts about competency, they would be expected to request a psychological or psychiatric consult."

On her husband's accident hitting so close to her academic expertise

"To have it become so real, that someone you love — and love a lot, deeply — would be enmeshed in the same ... very kind of choice you had been thinking about academically for so long is an extraordinary experience. In one way, it's a healthy experience as it forces me to rethink everything. And even doing that, and even given the acute agony of being so close to something that is so difficult, it doesn't change my basic position that people should be recognized to have the right to not only live their lives in ways of their own choosing, providing of course that they don't harm others ... be the architects of their own lives, but that includes the very ... ends of their lives. You shouldn't have to lose those rights just at the end, especially since the very end makes the greatest amount of difference to some people, and also to some of their loved ones around them."

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

TERRY GROSS, HOST:

This is FRESH AIR. After writing books and essays about end-of-life issues and advocating for the right to die, my guest, bioethicist Margaret Battin, has had to wrestle with the issue in her own family. Her husband, Brooke Hopkins, an English professor at the University of Utah, where she's also a professor, broke his neck in a bicycle accident in 2008. It left him with quadriplegia, dependent on life-support technology. In order to breathe, he requires a ventilator some of the time and a diaphragmatic pacer all the time. He receives his nutrition through a feeding tube.

This is technology his living will gives him the right to decline. Although he's chosen to keep living, there have been times he's told his wife he wants to die, and she's had to decide how literally to interpret that.

Battin and Hopkins are in their early 70s. She's a distinguished professor of philosophy and still teaches full-time. When he's doing well and not suffering from one of the many infections that have plagued him since the accident, he's able to do some teaching from his home, talk with friends who come to visit, go in his wheelchair on walks with his wife, and even occasionally get taken to a concert or museum.

Battin and Hopkins were profiled in the cover story of last Sunday's New York Times Magazine.

Peggy Battin, welcome to FRESH AIR. At what point were you able to talk with your husband and ask him what his wishes were, if he preferred to live or to die? And I'm making the assumption here that that was a conversation you felt you needed to have, that his quality of life was so drastically different from what he thought he'd want to live with that you felt the need to have that conversation?

MARGARET BATTIN: It's odd that we didn't have that conversation. At least, I don't recall that conversation. And I think it's because in those early days, you are so intent on survival - can he pull through these respiratory problems? And once those were a little more stabilized and he was able to communicate, there's a whole new phenomenon, and that's the enormous expression of love and affection and concern from family members, friends, people you haven't seen for five years, this overwhelming involvement and concern by other people.

So your circumstances are so altered, and altered by this phenomenon that doesn't occur for most people in their ordinary lives; you don't have all of your entire family and your entire range of friends all showering you with love all at once. That's quite heady in a way. You might even say it's even sublime in its extraordinariness. That made a huge amount of difference.

So, at the beginning, we'd been told that the initial paralysis would last five to six weeks anyway, and only after that would you have some sense of realistic prognosis. So while you worry about it, you knew that there was no point in thinking about it until after this period. Would he be able to get up and walk away eventually? Well, maybe. That's the kind of thing you can't tell. So such a choice would have been premature. Also, walking isn't the only thing in the world.

GROSS: So when was the first time that you were actually able to talk with your husband about whether he wanted to live or die, where he had enough information so he knew something of what his future would be?

BATTIN: I can't recall, Terry, exactly when that might have happened. It's one of those things that comes as an understanding. But for the first couple of years, I don't think we talked about it very much at all.

GROSS: For the first couple of years you didn't.

BATTIN: That's right. I don't recall talking about it very much. We kept a detailed account of our thinking about things, and there are reflections in that account about how one's existence has been transformed, how one's way of seeing things - everything from eating, to sex, to friendship, to how those are transformed. But I don't recall discussions of dying.

GROSS: The impression I've gotten reading about you both is that there's times when your husband has told you that he wanted to die, and there's other times when he's told you that his life feels full and has some rewarding aspects that it didn't even have before his accident and injuries.

BATTIN: Mm-hmm.

GROSS: But how do you, as a bioethicist who's advocated for the right to die, feel about - like how do you interpret it when your husband says he wants to die? How do you know whether that's something that he's going to change his mind about in five minutes, or whether that's something that you need to take seriously and honor?

BATTIN: Well, I think you have to take it seriously. That doesn't mean that because he says I want to die right now, that you have to marshal action about it. He has said that he wishes to die. I've heard this, however, a number of times in situations in which he's - in which typically an infection is brewing. And he also recognizes that. So he will say, but I don't really mean it, or I really, really desperately want to stay alive. So it's, in a way, it's up to me to try to sort out whether the request to die is an expression of distress or whether it's genuine.

GROSS: That is some huge responsibility.

BATTIN: Well, it's not easy, I can tell you that. It doesn't diminish in any way my belief and firmly considered position that people ought to be able, ought to be legally protected, legally empowered to control the character of their own deaths. I do favor legalization of Death with Dignity laws, but that doesn't mean that these decisions are always easy. I'm not a physician, I don't pretend to be, so under the Death with Dignity laws it would be the physician who made the determination of whether acceding to this request was appropriate or not.

GROSS: If your husband reaches the point where he feels life has lost any pleasure or meaning for him and that the pain or the helplessness or the despair is more than he wants to handle any longer and he decides that he would prefer to end his life, if that ever happens somewhere down the line, what would his options be? And I ask this knowing that you're not only his wife, but you're also a bioethicist who is an expert on the right to die.

BATTIN: Mm-hmm. I can tell you, it's a very, very strange experience to have spent 20 or 30 years - 30 years, actually, thinking and writing about these issues and having been involved in various sorts of public defense of the right to die favoring...

GROSS: Court cases, probably, right?

BATTIN: Court cases, right, teaching courses, writing papers, writing books, doing research, all those things. You try to always take account of what folks on the other side of this issue say. So I've been interested in conjectures about the possibility of abuse, for instance, or inadequately reasoned choices. But to have it become so real...

GROSS: Mm-hmm.

BATTIN: ...that someone you love - and love a lot, deeply - would be enmeshed in the same - it's not quite the same, but in the very kind of choice that you had been thinking about academically for so long, is an extraordinary experience. In one way, it's a healthy experience. That is, it forces me to rethink everything. And even doing that, and even given the acute, you might almost say agony of being so close to something that is so difficult, it doesn't change my basic position, that people should be recognized to have the right to not only live their lives in ways of their own choosing, but - be the architects of their own lives, but that includes the very, to the ends of their lives, especially since the very end makes the greatest amount of difference to some people.

GROSS: Your husband once asked to be taken off the ventilator and to be allowed to die. And he was removed from the life-support technology that sustains him. So before we get to what happened, how did he reach the point of asking to do that and how did you reach the point of going along with him on that?

BATTIN: Well, this was together with one of our staff who's a respiratory therapist, and she and I were there and he had said he wanted to die a number of times. And this moment was just a moment where this seemed to be the right thing to do. So he said I want you to disconnect it all. He was in a state of considerable anguish. I want you to disconnect the ventilator. We did that. We turned off the oxygen and showed him that it was off.

So there he is without any of these things. And he sat in his wheelchair. This was in the middle of the afternoon. It was a very gray - happened to be the first of April, April Fool's Day, although there was nothing fooling about this. And he sat there as upright as he's able to make himself sit with his eyes closed. And he sat there. And he sat there. It was completely silent in this room.

After some very, very long minutes he opened his eyes and he looked around and he said, am I dreaming? Am I alive? And it took the respiratory therapist and me quite a while to have him understand that, yes, he was still alive. He wasn't dead. And when finally he understood that, he said, oh, I'm so happy. I'm overjoyed, he said. And this is a phrase he wouldn't characteristically use, but he said I'm a particularly happy camper.

He was elated. So what lesson do we draw from that? Now...

GROSS: Did he not realize and did you not realize that he was capable of breathing on his own for several minutes without the life support machinery?

BATTIN: Yeah. No, both the respiratory therapist and I knew that he would not die, or not die immediately. That's because he is often not on the ventilator. It's also the case that he often does not require supplemental oxygen. So we didn't think that that would be fatal. In fact, we both knew that, even though we didn't have to say so at the moment. And furthermore, we have all this rescue equipment around.

We have the ventilator right there in the room...

GROSS: Would you have used that, though? Because that would've been violating his wishes. If he was serious about dying and then he started choking as if he were in the process of dying, would you have revived him?

BATTIN: So that's a very hard question, Terry. I think we would have tried to revive him, right? Because you still don't know how serious his wish is. Now, supposing, though, he had opened his eyes after a few minutes just the way he did and said, what, I'm still alive? Are you serious? I am so disappointed. Oh, no. This is wrong. Right? Would you have done it over again? Would you regret that you had done it?

I don't know how to answer that.

GROSS: Were you very relieved that he'd reached this realization he actually wanted to live?

BATTIN: It was very - it was a huge relief for me and it was also a huge relief for him. And the respiratory therapist went home and cried, she was so relieved. And we were all relieved.

GROSS: Yeah. No, let me just pose a question here. Because, like, say there was physician-assisted suicide and he was so convinced he wanted to die and he'd been administered a lethal dose of something, when it turns out there was still a part of him that really wanted to live. He didn't know that? And he wouldn't have been allowed to discover that.

What kind of second thoughts does that give you as a bioethicist?

BATTIN: It doesn't give me second thoughts in the following respect, because if you take these steps under the instruction of the law, so to speak, under the protection of the law, there - it requires a much more formal process in the sense of making formal requests, signing papers. There's a waiting period.

GROSS: So it takes a lot of time.

BATTIN: It takes time. Under three of the statutes there's a waiting period of, I think it's 15 days. There have to be two oral requests at least and a written request. And as I said, there has to be a psychiatric or psychological consult if there's any question about mental capacity. And the kind of situation that he was in, this sense of agitation at that time, I think wouldn't have passed those psych - that is, they would've said that there's some extreme temporary anxiety here.

I think. But a more considered, more discussed, more openly disseminated decision, one that doesn't show any hints of ambivalence, that I believe should be respected.

GROSS: My guest is bioethicist Margaret Battin. We'll talk more after a break. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: My guest is bioethicist Margaret Battin. After writing many books and articles about end of life issues and the right to die, she's had to deal with related issues in her own family. Four years ago her husband, Brooke Hopkins, broke his neck. He has quadriplegia and is dependent on life support technology but he can still talk and manages to teach some classes from his home.

Besides teaching, what gives your husband pleasure now? It's not food, because he can't eat. He gets his...

BATTIN: Well, actually, we've talked about food. He does have a feeding tube now and he has the, if you can call it, pleasure of being less likely to contract aspiration pneumonias. But we also thought about eating. Well, if you think about eating, what does eating involve? It involves the appreciation of the presentation of food. It involves the aroma of food. It involves the taste of food. Right? And you can still do all those things.

You can see it. You can smell it. You can put it in your mouth and taste it. And then do what a wine taster does - spit it our discreetly. And so what you don't do is swallow it, right? Well, swallowing is the least interesting part of eating. Right? The pleasure is not in the swallowing. It's in all the stuff that comes before that.

GROSS: Your husband was raised Catholic but identifies now as Buddhist and there's a Buddhist teacher who has visited him and talked about how the body is ephemeral. You know, one...

BATTIN: The body is nothing, he said. The body is nothing. The mind is everything. The thing about Buddhism - I don't have a sense that he's particularly interested in the theology of Buddhism, such as it is, but the sense of not looking backward at what you've lost - and he has not ever really done that very much, nor has he been angry, nor has he wanted to blame other people...

GROSS: Including himself?

BATTIN: Including himself. Also this tradition discourages worrying about the future. But the thrust of Buddhism that was the most helpful for him was the focus on the current moment. Now, that can be exaggerated and can be a source of philosophic complexity. What is the moment? How big is it? You know, problems like that. But just to focus on what's here and now. So a way of thinking about it for me, Terry, is that, well, in my life what's here and now?

Well, I'm talking with you. That's rather wonderful. Right? So I don't need to be worrying about what was in the past or what might happen in future if I enjoy the pleasure of this conversation. Even if it's about painful things, it's still something good about this moment.

GROSS: So, Peggy, I have one other question for you. Of all of the bioethics writing you've done over the years, of all the writing you've done about the right to die, is there anything you wish you could change now because of what you've experienced with your husband?

BATTIN: Well, at one point I said I'm tempted to go back and look at everything I've ever written on this topic and maybe throw it all away, but as I do go back and look at it, I don't see much that I would change. Except that the issue has become much, much more subtle, complicated. But it's not that the issue is more subtle, it's that people are more complicated.

A decision in any situation where right to die issues are coming up, and as I said, it's mostly terminal illness, that every single one of the people facing death will think about it differently. These are all still people facing an end and considering how they hope to do this. I sometimes use the expression the least worst death. It's the notion of individual reflection on how, given that death is coming anyway, you could make it the least worst for you.

That's the thinking that I do that hasn't changed at all. And it hasn't changed in Brooke's situation either. What would he regard as the least worst? Well, that we'll see.

GROSS: Well, I want to thank you so much for talking with us, and I wish you well.

And your husband too.

BATTIN: Thank you.

GROSS: Margaret Battin is a professor at the University of Utah. She and her husband, Brooke Hopkins, were the subject of the New York Times cover story last Sunday. You'll find a link to that article on our website, freshair.npr.org. Transcript provided by NPR, Copyright NPR.