Dr. Timothy Quill is Professor of Medicine and Psychiatry at the University of Rochester School of Medicine and Dentistry, Rochester, New York. Primary Care Internist. Associate Chief of Medicine at Genesee Hospital.
Q: Dr. Kevorkian's trial which is underway this month (April 1996)--what's your take on its significance? Is there any importance in the fact that this may be his last big trial?
Quill: I really hope this is the end of the era. Where this can be characterized as something of a marginal activity, something on the edges, I think Dr. Kevorkian is very much on the edges of what ordinary doctors do. And now we have the opportunity to really look at what mainstream doctors are doing, what they have been doing in secret, how they might be able to do it better so that we can really achieve the more important goals which are not about assisted suicide, but about good care for dying people, that's what we're all trying to promote.
Q: There are issues in this trial that go right to the heart of good care for dying people...the two cases the trial is dealing with are tough calls, I suspect.
Quill: They're the toughest calls . Neither of them were terminally ill and one wasn't even well diagnosed, or characterized what was going on. And then you're talking about how do we deal with people who are suffering and how can we better care for them, which are much broader issues and really, assisted suicide should not be a part of that debate, that's about good care, good palliative care if they're suffering -- trying to address their suffering in a deeper and more comprehensive way.
Q: Take the case, for example, of Marjorie Wantz...the doctors say, here's a woman who is profoundly depressed, had a number of surgeries, some botched, some maybe inappropriate, given a major amount of drugs and for years said she was going to commit suicide and then pursued [Kevorkian] long and hard. The prosecution pushes hard that she would never get better as long as there are physicians like Kevorkian. That the option of assisted suicide may be just enough for Marjorie Wantz never to participate in her own care. What do you think?
Quill: I don't know her at all...so I'm not sure it applies with her. But for many terminally ill people, particularly, who are suffering and have fears about their future, the possibility of an out is actually extraordinarily important. For some people, it frees them to try experimental therapy. To try things they might not otherwise try because they know if they try those things and their suffering gets terrible, unbearable there will be an out. And I've talked with many people about this particular issue. And they say, 'I'm really glad to know that the possibilities there, I don't think I'll ever have to use it.' And in fact they rarely have to use it if they are receiving good hospice oriented care. But the possibility is very key.
Q: It's interesting because Sherry Miller's physician said he knew he had lost her as a patient. He said, what Kevorkian became in their relationship is a stumbling block, it's like putting a stumbling block in front of a blind person, that there was never any reason for her, from his point of view to go any further, to participate any more. What do you say to that?
Quill: You'd really have to talk to her about that and see what this meant, I don't believe that that's a common dynamic. I've talked with people who had ALS who were on breathing machines and feeding tubes and somehow knowing, figuring out that they could stop, and we openly allow people to stop life sustaining treatment as an example, we say they have a right to do that -- that we have an obligation to help them if they choose to do that. We may make them go through some steps to be sure that they're sure that they want us to stop that treatment, but with the knowledge that they could stop, they choose to go on.
Elizabeth Bullier would be a classic example of this. Fought like crazy for the right to have her feeding tube stop, won it after an enormous battle and then chose to keep living because she had a key to an escape if she needed it, it gave her the freedom to choose to keep living instead of being forced to keep living. It is very important to a lot of people.
Q: How much has this issue changed since 1990?
Quill: I think it's changed pretty dramatically, almost beyond imagination in terms of social change. We've gone from a marginal issue, an issue that was completely underground and secret to something that is part of people's imagination and discussion now. That real experiences happening to real people are much closer to us all and I think that's all to the good, the notion of a deeper understanding of what's really happening to people. It's certainly the landscape in which the recent court decisions have changed the playing field, again almost beyond imagination, probably a little bit too rapidly because we don't have any experience of how to really do this out in the open if these decisions are upheld.
Q: What's it like for you--this change?
Quill: It's pretty uncomfortable actually. It's a lot of change in a short period of time. I'm more comfortable with slower paced, kind of orderly change and this change has been pretty abrupt. And you know, we don't have a lot of experience about whether this is actually going to be a net good.
I know about the problems of a secret practice. I know that the safest thing in the past has been for doctors to turn their backs when the suffering gets very tough -- people want to die, the safest thing is to walk away. I know that doctors have been secretly helping patients for years. And we know more about that now, there've been some studies about this.
But we don't know what it's going to be like with a more open practice. I have some hopes about that. My hope is that what really..what people are trying to tell us we will listen to much more seriously. When somebody says they want to die, instead of walking away the doctor's going to listen to that and say why, and why now, and isn't there some alternative we can come up with and tell me what's the worst part instead of you shouldn't feel that way. So if that happens, if it deepens the dialogue and people work together, more closely then I think we're going to really progress. If people use this as a quick fix and use the first request and respond to that with assisted dying, we [have] a huge problem.
My hope is that, again, with safeguard you can promote that kind of deepening of a relationship and understanding, but we don't know.
Q: You talked too about the fact that we know more about doctors attitudes and behavior then we did even two years ago. Tell me what do we know now?
Quill: Probably, the most important study was a study out of the state of Washington, which was a large survey of physicians, the mainstream, everyday physicians who take care of patients and what the study showed was that 16% of doctors in the year of the study had a genuine request from at least one patient in the prior year for an assisted death and one quarter of those doctors provided a lethal prescription. So this is a very prevalent process. Almost none of the cases had a formal consultation of any kind. It was secret and very rarely was the request simply from undertreated pain which is what we've all been saying -- it's not simply a matter of physical pain, it's [much] more a comb[ination] of physical symptoms plus extreme fatigue with living, loss of dignity, tired of being dependant, in combination with severe physical symptoms.
Q: It's happening anyway, why do we need to bring it out of the closet, and all the attendant problems?
Quill: We have two problems right now. One we have to promote paliative care because we don't know that in those secret cases whether those people have had good care. The key to allowing this is we have to be sure people have good paliative care first. That's the standard of care -- what everybody should get and it works adequately most of the time. So the assisted dying becomes a very narrow question when the standard of care fails. And it should be subject to safeguards, probably the most important safeguard is to have an independent second opinion by somebody who has a lot of experience working with dying people. One of the real problems of Dr. Kevorkian is that he has no experience working with dying people who are choosing to keep going, who are finding a way to survive, or even enjoy, find meaning to what they are doing, he has been most interested in the moment of death, which is such a small piece of this. The other part of this is much more centrally important.
Q: Much of what happens with his patients and maybe what happens with other patients is that there's this disconnect between them and their physicians...talk a little bit about that.
Quill: Well, we have had prior to this Court decision a very funny situation about what a physician's responsibilities and intentions are when they're helping somebody to die. Basically, you're allowed to do this if you don't really mean to do it, if it's unintentional. But you're not allowed to intentionally let someone die. That violates an arbitrary standard that's been set up. So you can do it if you don't intend it, but if you intend it you can't do it. We've developed some even more complicated ways of thinking about it -- you can forsee the consequence of a person dying as a result of what you're going to do, but you can't intend it. There's a double effect.
Q: What does that mean in real language...forsee but not intend?
Quill: In real language what it means...it's used to justify doing chemotherapy. You can forseee that chemo may produce nausea and vomiting, other bad symptoms, suffering, but your intention in giving a person chemotherapy is not to do that, it's to potentially prolong their life.
On the other end of the spectrum with a dying patient, you can foresee that using higher dose pain medicines may suppress respirations, may make them more likely to die, but you accept that possibility because of the higher purpose of relieving their pain and relieving their suffering.
Now what does that mean. How do you work that when a person is starting to suffer in an extreme way and starts asking for your help in dying, how does that principle work? If you help them to die -- and do it consciously, intentionally--you are then...double effect, so you have to not intentionally do that...so it creates an ambiguity that makes the safest thing to do, to walk away, to step back, to under-medicate in the worst case situation.
Q: What are the big issues involved in the Kevorkian trial right now?
Quill: That's a hard question to answer. I actually don't follow the trial that carefully, it seems to me it's so far off from the mainstream the way the arguments are being made that it's very hard to relate to. It's not going to set, I don't think, any precedents, it's not going to open up any kind of practice because the arguments aren't solid -- Kevorkian is saying he's not intending to help them to die -- he's intending to relieve suffering...he's playing a game with the double-effect kind of arguing and it just doesn't hold up.
The cases are just so far off the mainstream that I don't think they are going to change things one way or another. People aren't going to feel more secure with him getting off although it does show -- and this is the simple answer -- if you can't convict Kevorkian for these cases, this is unprosecutable -- unwinable . You can prosecute it, but it's unwinnable. Now most doctors in their right mind aren't going to want to go through this kind of trial or this kind of show, but so they're not going to show what they're doing out in the open, but it really says this is not a prosecutable activity.
Q: So what's going on?
Quill: Well, this ends up being a very political process. I think we're going to start to see the politics of all of this start to show themselves, probably more clearly. People want to make an example out of Kevorkian...try to pass a law that was clearly directed at trying to stop Kevorkian...it wasn't directed at good care for the dying and they couldn't even pass that in a lasting way. The legal system tends to polarize, to make arguments from extremes and that is not a good way to solve this particular issue -- this needs consensus building, it needs people who care deeply about the dying to get together and figure out how to solve some of these problems and I don't think it's going to be done in a trial kind of system at all.
Q: I've always had the impression that Kevorkian was helping if only through a sort of public awareness way...
Quill: I think it's not helping at all. I mean it gives the sense of a system completely out of control when you have this guy, Kevorkian, who is on the edges of, out of control, a good part of the time. His comments are always very outrageous and on the edges and provocative and clearly enjoys the limelight and he [is] sort of thumbing his nose at the prosecutor and the judicial system and the Constitution...it really gives the sense that it is a chaotic process. And right now I think it's the last thing we need if we are going to have serious discourse about this issue. My hope is that this ends this whole series of events and that we can get on to the serious business of trying to figure out how to better care for the dying.
Q: Is it likely that any jury is going to convict even Jack Kevorkian?
Quill: I don't think a jury is going to convict Jack Kevorkian, I mean to his credit you have to say, the families of these patients are extremely supportive of what he did. And he has met with them, he did some interviews with his patients and they are not saying that he did anything wrong -- he was at least willing to listen to what they were saying at a time when nobody else would. And that's a powerful thing to do, listening to this kind of distress, hearing it in a way that says -- I hear what you're saying -- it's legitimate, I'm going to try to understand it and I'm going to try to respond to it.
Trying to address what they were telling him and seeing if there was a way to respond is, I think, a very important piece of this and that's probably what people are very connected with -- with Kevorkian.
Q: Why does it seem to be so difficult for so many doctors to deal with helping their patients die?
Quill: Well, we're not supposed to help people to die...you know, in a conscious way. You know there's such ambivalence about this whole process and how we're turning in such an uncertain way. My own belief is that's where we need to go, we need to say -- it is your job as physician to help people die better, we have to be able to say that in an unambiguous way. And that usually means, relieving suffering, helping them get into hospice care and then doing the hard work that involves addressing symptoms, mobilizing supports and so on.
But if a person ends up in a bad situation, in spite of that, it means you have an obligation to help them through that process. That's the piece that's been missing...people have said, I can't intentionally help a person to die even if they're in the extremist -- because that violates the way I've been taught or the way medical ethics tells me I should behave. And that puts people in a very difficult situation when a person starts talking about wanting to die --
'You shouldn't want that, maybe that's a sign of psychopathology in the first place -- maybe we should put 24 hour supervision to make sure you don't kill yourself.' That's sort of the first response. And that is not - the first response is 'Tell me about that -- why is this coming out now, why not last week, or next month, I need to really understand this before I have any idea how to respond' -- and in that explanation again, usually you find other avenues to respond that don't involve assisting death. But sometimes people have really reached the end of their rope, and then you have a hard situation.
This is very hard stuff. Getting close, in an emotional sense, to that kind of suffering is I think a very hard thing to do, it takes practice. You don't know what to do always and doctors like to know what to do, we don't train people very carefully about how should we respond, how do you explore that kind of suffering, how do you talk to somebody who feels hopeless for example -- hard work. And that's part of the work that needs to be done is to train doctors to talk about those things.
And then to be very clear with them about what their responsibilities are. We tell them a lot about what they shouldn't do, but what should you do in that circumstance.
And clearly the first thing they should do is make sure that palliative care is being well, make sure it's not pain relief. Get your most experienced colleague in the room who knows about his to help you, if you don't know. As opposed to making some decision in secret, either to turn your back, that's abandonment really in my mind...or to help somebody, which might be the right thing to do, but clearly that would be better as a consensus kind of decision, than a decision made in isolation.
Q: The patient says, 'I want to kill myself'...in every case the first impulse of the physician...is I want you to see a psychiatrist, I want you to get some medication, you're obviously in a depression -- is that the right thing to do?
Quill: Sometimes it is the right thing to do. Sometimes people have become depressed in a way that might be amenable to conversation or medication and if that's the case or your not sure if that's the case then seeing a psychiatrist is a very appropriate thing to do. I will add that not a lot of psychiatrists have a lot of experience working with severely physically ill people, so finding the right person to do this is sometimes a challenge.
My own experience is that the people that know how to do this are...hospice....etc...they have the most experience working with people who are severely ill and who are facing these kinds of questions, so my consultation would always be with them first unless I was sure that there [was] a psychiatric-oriented problem going on. But I think it's a question that needs to be answered clearly before you'd ever assist somebody to die. But we also can't be too romantic about this. I mean a person, let's say who's dying in severe shortness of breath, just at the edge of death who's saying I need to escape this, this is not living. [Two] weeks or a month for medication -- they're an extremist, they can't enter into psychotherapy, so you have to [have] an ability and a willingness to respond to that as an emergency, right now, that can't wait.
Another person who might be much further off, or like these kinds of patients that you're talking about today, I think they must see a psychiatrist-- that's a requirement, because they have a potentially long life ahead of them and a psychiatrist might be able to help them refind a will to live.
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