The Right to Die

THE OPEN MIND
Host: Richard D. Heffner
Guest: Rose Gasner
Title: “The Right To Die”
VTR: 12/2/89

I’m Richard Heffner, your host on THE OPEN MIND. Now I remember decades ago viewers used to comment that they could pretty well tell a good deal about my personal life – what developmental stages my children were at, where in the life cycle my wife and I were: that sort of thing – by the very topics and guests I would occasionally choose for THE OPEN MIND.

Well, I’m sure that was true in the 1950s. And today’s topic makes it abundantly clear that it’s true today too, when for me at least the intimations of mortality have become quite so commonplace … a bit sadly, to be sure, but quite appropriately, too, and inevitably.

So that even in the joy of life beginning (with the birth the other week of Alexander Benjamin Heffner, our first grandchild), I must think, too, of its ending as must we all eventually think of going more g into the darkness, perhaps with greater dignity, surely more at our own disposal than at others’.

All of which is why I was so interested some time back when here on THE OPEN MIND Nat Hentoff, whom I so hugely admire in so many of his intellectual sallies and thrusts, vigorously, almost venomously, took out after the highly respected, ever more influential Society For The Right To Die.

Indeed, at one point, Mr. Hentoff said: “Yeah, but when you mess around in somebody’s private life, especially when it’s a matter of life and death, one tries to be discrete at least. I am more concerned with those organizations, like the Society For The Right To Die, or concerned for dying, which, and I’m sure they are honestly full of good intentions, seem to be on an obsessive kick to make it easier and easier for people to die. They get involved with court cases which they nave all the right in the world to do, but what struck me … I read their newsletter, it’s an equivalent to me, in my adult years, of horror stories when I was a kid, though they don’t intend them to be. But in one of their newsletters there was a list of how many people there were in the United States in hospitals who are incompetent and that was it, just the list, and I wondered what on earth would they put that for? Was that sort of like the goal of the week that they were going to take care of all those people? I mean it’s incredible, and they’re the ones, by the way, in my business, who have pretty much the full support of most reporters and most editorial writers”.

Quite a mouthful, particularly when Mr. Hentoff added that he finds this to be “a very frightening zeitgeist, with parallels to Nazi Germany”. Perhaps, then, we could turn to today’s guest to say otherwise. Rose Gasner is Staff Attorney for the Society For The Right to Die. And I want to ask her how she responds?

Gasner: Well, I think Mr. Hentoff sadly misrepresents what the Society For The Right To Die is about. What we are about is representing the individual’s right to refuse life sustaining treatment. We’re not out to knock off huge numbers of people, but we’re also a public resource, and we do print statistics and let the world know what some of the implications of these rights might be.

Heffner: Like what? What implications?

Gasner: Well the implications are that people will be allowed to refuse treatment. People will be allowed to determine their own medical course. Sometimes it also means that their family will be able to speak for them, and so, there are some incompetent people who right now the law forbids their family to make a choice that they know that person would want. Changes in the law will affect those incompetent people.

Heffner: Are we talking then mostly about incompetent people? Are we talking mostly about people who are not, at a particular moment, capable of making a choice between life and death themselves?

Gasner: Well, the Society’s more concerned about competent. people because I think probably the most important thing we do is try to get people to think about this issue. Most people don’t like to think about death, understandably. Apparently only a third of the population have property Wills. What we’re trying to get them to do is fill out Living Wills which would be written documents, saying in advance how they would want their medical treatment decisions handled once they become incompetent. We don’t want people to be incompetent, hopelessly ill and have everyone wondering what to do. We would prefer it if people would take that responsibility upon themselves and let the world know what they would want done.

Heffner: Isn’t one of the problems, though, that it seems almost impossible to do so, to look into the future, and to try to anticipate what your own situation would be, is so difficult, that it must stay the hands of those who would otherwise write Living Wills, as you call them.

Gasner: Yes. Well, I think it’s … it’s an inherent problem with Living Wills, but I think executing those documents are the best we can do. Of course, we can’t predict what’s going to happen, however, the dying process has become one which is highly technical and technology gets applied. The American medical establishment has a real incentive and a real instinct to treat everything aggressively. And in the dying process there will come a time when someone becomes unable to speak for them self. The Living Will tries to figure out at which point the person would no longer want treatment, and a road map that says, “If this, that and the other thing” … with a laundry list of possibilities … that’s the best kind of Living Will, but I think it is highly unlikely that people can make those predictions. Actually, to respond in the best way, legally, to that situation, is for people to have a Living Will and what’s called a “Durable Power of Attorney for Health Care”.

Heffner: How do you choose the person who holds that Power of Attorney.

Gasner: Well, the Living Will would express the person’s wishes.

Heffner: Generally.

Gasner. Generally, or as specifically as they’re able to in whatever their situation is. Some people have diseases that you can pretty much tell what the course of them will be. But if you appoint someone then they can interpret it based on their lifetime of experience with the patient. And when you ask, “Who should you appoint?”, I think you should appoint the person who understands your wishes best, who handles themselves in emotional situations with the clearest of heads I think that’s very important because some people have more trouble communicating with doctors, dealing with highly stressful emotional situations, and when you fill out a Durable Power of Attorney for Health Care, it allows you to figure out who you trust most to keep their wits about them and do what you would want under those extraordinarily trying circumstances.

Heffner: That means, too, I imagine that someone has to accept that responsibility.

Gasner: Yes, and I think it’s imperative that people discuss it with the person because no one wants to take this on. On the other hand, someone is going to take it on. I think that’s the other thing about this issue, that people like Mr. Hentoff could drive me crazy. Death is not optional.

Gasner: These decisions have to be made, and I wish we lived in a world that was black and white, and that you could say that we will just treat everything. The fact of the matter is that there is a point where it becomes medically futile and the decision has to be made whether or not to continue. If you don’t fill out a Living Will your family will be wringing their hands, wondering what you would want, wondering what’s right, and to have written it down, in my experience in dealing with families, it just takes a huge burden off of them. They don’t have to worry about whether they’re doing the right thing. They’re doing what the patient would want.

Heffner: Do I understand correctly that if you die without such a Will, or without having arranged for a surrogate, or indeed, die in a state, and I’m now thinking about my own state of New York…

Gasner: Yes.

Heffner: … where provision has not been made in the law, specifically, for Living Wills, that your fate is then in the hands, if not of the medical profession, of the hospital in which you may find yourself at the … at the end, and the instinct of the hospital, and indeed of the medical profession, must be to preserve life, whether for legal or moral, ethical reasons. Is that a fair…

Gasner: What’s happening now is the law has really taken over this issue, and this is something that … well, I am an attorney, and this is what I do full time, I don’t approve of this. But across the country, different states are developing different standards of proof and different systems for making these decisions. New York has one of the worst Rules of Law in terms of implementation, in terms of patient’s Rights because it requires people to leave behind clear and convincing evidence that they would not want the treatment. It puts all the burden on them. If someone didn’t have a conversation about what they thought of the Karen Ann Quinlan case, or just was reticent about talking about these issues and didn’t leave a Living Will, you’re right, the only legal option is to continue to treat.

Heffner: What states are those that you think are … I’m loading the question and the answer, too … most enlightened? Or that give the most to an easier, softer interpretation of the … of the power of the Living Will?

Gasner: California has very liberal law from our point of view, and liberal in tills issue is sort of a non-word. What we are striving to achieve is that families get to make these decisions with doctors, finding out all the medical information they need to know, and that they get to make these decisions privately.

Heffner: What you’re saying … you want to keep the lawyers out of it.

Gasner: Keep the lawyers out of it. If there is a dispute … I mean there will be disputes, there will be circumstances in which a family may want to cut off treatment before it seems medically appropriate, before all the medical facts are in. I would want a doctor to balk at that request and refuse it Then you have a conflict that may require judicial resolution if it can’t be res within the institution. But those are the problem cases, and those will always end up in court. But if everyone agrees that this is the right thing to do, and that the time has come and this is what the patient would want, I want those decisions made by the bedside, and not have people required to go in and get the approval of a judge California, Arkansas, those are two good examples of states that have provisions that leave these decisions privately.

Heffner: Then given the fact of Arkansas one can’t simply dismiss this matter of California as “Well, that’s California”.

Gasner: No, that’s why … that’s why I raised that particular state. And actually to give you a sense of how mainstream our position is, the Uniform Rights of the Terminally ill Act, which is put together by a national body, the National Conference of Commissioners of State Laws, their legislation has a Living Will, a Health Care Agent appointment, plus what I’m talking about which is surrogate decision-making, which it has a list of people who the doctors can look to for treatment decisions in an order of priority, which is how most people would want it. First, a legal guardian, spouse, oldest child, a list like that. If a doctor follows the advice of the top person, they’re protected.

Heffner: And if not?

Gasner: If not then I would imagine that the family could sue the doctor. But what that does … it allows private decision-making and it gives the medical profession the immunity from liability and the legal certainty that they seem to require on these matters.

Heffner: It also seems to assume that even within a family there is likely to be, or with a family you choose, as you say, an attorney, perhaps, a doctor, perhaps, spouse, oldest child…

Gasner: Yes.

Heffner: … there is going to be a philosophical agreement. When, indeed, it seems to me that that might be the most difficult thing to achieve. Am I … am I wrong in terms of your experience?

Gasner No, you’re right. The families that reach us are the families who are very clear. I have to say that I think by the time they’ve decided to take on a hospital and the doctors and sometimes even a court case that will have a lot of publicity, you have to be pretty tough and pretty unanimous and pretty clear that you’re doing what’s right. The everyday situation in a hospital does involve disputes among the family. Death is hard when there’s someone who is dying, the entire family has different emotions, and probably has different feelings about the loss of that person. I don’t think law, or Right To Die will ever be able to legislate or make that any less painful, and I think hospitals and doctors are sort of used to helping families work that out, and good hospitals have Ethics Committees, have patient representatives that help a family come to some agreement, but I think there will be situations where families don’t agree and…

Heffner: I told you before we began our program that I was talking about this with my wife this morning…

Gasner: Yes.

Heffner: …realizing that we don’t have Living Wills and I think we should, at least I know I want one … I was saying that because we disagree, to a certain extent, in terms of her religious upbringing and my absence of a religious upbringing. Now that has to be…

Gasner: Yes.

Heffner: … an important point in all this, and I was saying that fears that I used to have as a kid, the things probably induced by some movies that I had seen, one of being buried and not really being dead…

Gasner: Hmmmph.

Heffner: And the other was in a sense just exactly the … the opposite, and I think that’s what we’re … we’re dealing with here, not being permitted to say, “That’s it”, when I think that’s it.

Gasner: We think one of the policy implications, and I hear this all the time from senior citizens who call and want to know, “is my Living Will alright?”. What’s happening is that people are scared to cheek into hospitals when they’re in a stage of life where they know they’re going to die, their family may not like to talk about it, but they know that they’re at the end of life, and they’re terrified of ending up in a hospital bed with tubes, possibly for months, they’ve seen it happen to their friends, and some of them say, “I told my husband, don’t call 911. If something happens to me, I don’t want to go to a hospital”.

Heffner: You know that’s why it seemed to me, forgive me, that the title “Right To Die” is poorly chosen. It’s really Right To Live As One Decides One Wants To Live and at the end of that period, that’s it. It’s much more a matter of living in a certain way than dying in a certain way. And you talked about the anxieties, the fears that people face … you make the point that even a very small percentage of us … not a small percentage, but a significantly small percentage of us have Wills relating to our property.

Gasner: Yes.

Heffner: What’s the percentage of people who have Wills relating to their lives?

Gasner: I’ve seen statistics between 9% and 15%, and that’s pretty low, so I think even though, you know, the Society For The Right To Die will continue distributing these for free and continuing to try to get people to think about it, I think the chances of ultimately everyone having one are slim. Actually, I have an interesting point … a Senator Danforth has recently introduced some federal legislation that would require hospitals to discuss Living Wills with patients upon admission. I think if it became more of a matter of routine that people would feel more comfortable about it. If doctors would initiate more conversations, give people time to think about it, not shove it down anyone’s throat, but say, “One of the things you should think about is how you feel about life sustaining treatment, here’s a document that could express what you’re wishes are”.

Heffner: We as a people have not yet … has any society been able to deal more as a matter of fact with life and its end … death. Have others been … you used the word “more liberal” when you were talking…

Gasner: Yes.

Heffner: …about California before, more enlightened, more liberal, whatever it may be, maybe Nat Hentoff would say “more ghoulish”…

Gasner: Yes.

Heffner: …I don’t know.

Gasner: This is uniquely an American problem. I think no other country has this issue, part of it is our resources, our insurance, the fact that we can keep giving people medical treatment. The English system is much more strict, a lot of this technology simply is not offered to people, and I think we find that somewhat appalling, but it’s a uniquely American problem.

Heffner: Do you find it appalling that life preserving, life saving techniques even when someone is not terminal are not as readily available in England, for instance?

Gasner: Well, I think that there should be a Right to access to health care, we don’t have that here … we don’t. I think everyone should get the health care that they need, but the Right to die I see much more as a civil libertarian issue. Everyone should be able to get all the health care they want, but if they don’t want it, you shouldn’t force it on them.

Heffner: But if I understand you correctly, you’re saying it’s not a problem in other countries because they don’t have the resources we have, so they can’t keep people alive unendingly, it would seem, against their will, so they’re not confronted with a hospital that says, “we won’t take this person off this life-sustaining, or heart beat sustaining, or brain functioning sustaining…

Gasner: Yes.

Heffner: … machine. Is it only that? Is it that they just don’t have the resources?

Gasner: No, I think that there is … everyone says that Americans are death denying … that’s the slogan that get applied to the American people. We don’t like to talk about it, we don’t like to accept it, and it’s just not going to happen to us. I think there probably is some cultural “can-do” sense of we can conquer every disease, and we’re not going to die, that is absent elsewhere.

Heffner: That … that … when you say, you’ve said before we really need to discuss this among ourselves, talk with each other about this. That means we have to talk about it as something much more fundamentally, whether in school or earlier on

Gasner: Yes.

Heffner: … to understand that as it begins somewhere, it’s going to end. No one we know yet has avoided that end, and yet it is such a difficult thing to do.

Gasner: Oh, it is. I’ve … I find it hard. I mean this is what I do for a living, and still I have to go to nursing homes and speak and I … I get very anxious about it, but I tell you the audience is not anxious, and maybe it’s because it’s a self-selected group that have come to hear me speak.

Heffner: What do you mean “the audience isn’t anxious”? That’s an interesting observation. You mean the people who are in the hospitals, or in the nursing homes, they faced up to what may lie ahead of them?

Gasner: Exactly. I think they’re much more accepting, that they know where they’re at in the life cycle, and they’ve seen things happen to their friends, and usually they just tell me horrible anecdotes about what happened to so—and–so and when he was unconscious, the tubes, the machines … I never want that.

Heffner: May I ask if I understand correctly, and I think Nat Hentoff perhaps mis-stated this. He was sort of implying that when you sign one of these Living Wills, that’s it and you can yell at the top of your lungs and that has precedence over what you say today, what you signed last week or last year, has precedence … that’s not true, is it?

Gasner: That’s not true. A Living Will only becomes operative if you’re no longer able to speak for yourself. It can be revoked at any time, and as lone as you can still make your own treatment decisions, it has absolutely no place at all in a medical treatment setting.

Heffner: if you had to list, or guess at the reasons why there is so much opposition, aside from the cake of custom, aside from the unpleasantness of thinking of one’s own demise, and the fact that with that goes the demise of everyone one loves, what are the oppositions? I mean we heard Nat Hentoff.

Gasner: Well, I think it’s important to put him in context. He is extreme. All the statistics show that people are on our side, and we’re talking about polls that show from 70% to 85% of the American public want to be able to make these decisions privately.

Heffner: Yeah, but now come on, you’re the one who told me about the percentage … percentages of people who do, now how do you make those two statistics jibe?

Gasner: Well, I think you raise … I think as a matter of policy and as a matter of opinion, people are on our side. I think you’re absolutely right; no one wants to think about it in terms of themselves.

Heffner: Well, if … as a matter of policy, and Pm going to needle you on this if as a matter of policy you think they’re on your side, why don’t you have fifty states with the kinds of legislation that you feel important, that making Living Wills a lot easier.

Gasner: I don’t have to be defensive about this. Forty states and the District or Columbia have Living Will laws…

Heffner: Adequate?

Gasner: Not adequate, they have to be amended, they have to be worked out, but it’s also the recentcy of this issue has to be taken into account. Karen Ann Quinlan was 1976, and the fact that we’re still in a transitional time, and figuring out procedures to make these decisions, in that amount of time doesn’t really dismay me. But the American Medical Association, the American Academy of Neurology, the American Hospital Association, all of those organizations filed briefs in the United States Supreme Court on the side of the family and their right to stop treatment, and I can’t help but believe with all of those organizations and most of the public, all wanting to reach the same end that we won’t get there.

Heffner: Now…

Gasner: Despite Nat Hentoff.

Heffner: Well, let me ask you … it’s not an unfair question, if you had to argue the other side, if you had to take, not Nat’s position, but if you had to speak against the development that you represent…

Gasner: Yes.

Heffner: … what’s the down side?

Gasner: I guess the down side is that some mistakes will be made. Not all families are saints, not all doctors are perfect. There’s just reasonable medical certainty, and there is just looking at a family and making the best judgment you can about whether they are acting in the patient’s best interests.

Heffner: Are you for capital punishment?

Gasner: No.

Heffner: I suspect that one of the reasons is that your concern that mistakes might be made.

Gasner: Right.

Heffner: Okay. You say here, “there’ll be mistakes”. Why are you willing for mistakes to be made here, but not in the area of capital punishment?

Gasner: Because capital punishment is the government making mistakes. These are families making mistakes, and I think that there are other values that are being protected. I think the best analogy that I’ve thought of is child abuse. We value parents’ rights to raise their children the way they want to. As soon as we have any inkling that they are abusing a child, the force of government comes down upon them, but the privacy of that relationship has precedence over the potential for abuse, and we do the best we can to figure out if abuse is going on. I think that’s more like this situation. Most families can be trusted to make these decisions, there will be some bad apples, and the doctors in the hospitals will try to root them out…

Gasner: … and when we do find them, we will stop those decisions, bad decisions from being made, but to keep the state and keep some sort of bureaucracy out of this private decision making is the more important value.

Heffner: At any rate, as we come to the end of our program, the question “Who’s life is it, anyway?” is the one that’s basic here…

Gasner: Yes.

Heffner: … for those who do take the trouble and the time to make up their Living Wills, and I want to thank you for joining me today on a subject that I know that many people find very unpleasant, but better to discuss it now than to find that one made the mistake and didn’t. Thank you so much for joining me today.

Gasner: Thank you.

Heffner: And thanks, too, to you in the audience. I hope you’ll join us again next time. And if you care to share your thoughts about today’s program, today’s provocative subject, please write to THE OPEN MIND, P.O. Box 7977, FDR Station, New York, NY 10150. For transcripts send $2.00 in check or money order. Meanwhile, as an old friend used to say, “Good night and good luck”.

Continuing production of this series has generously been made possible by grants from: the Rosalind P. Walter Foundation; the M. Weiner Foundation of New Jersey; The Mediators and Richard and Gloria Manney; The Edythe and Dean Dowling Foundation; the New York Times Company Foundation; and, from the corporate community, Mutual of America.