by Arthur L. Caplan, PhD; Timothy E. Quill, MD – Medscape.com
Editor’s Note: Arthur Caplan, PhD, interviewed Timothy Quill, MD, as part of the Medscape video series Both Sides Now. Only a portion of Dr Quill’s interview could be included in the video because of time constraints. Here, we are posting the interview in its entirety. In the coming weeks, we will post interviews with other speakers in that video.
Arthur L. Caplan, PhD: It’s my great pleasure to have as a guest on this difficult topic one of the leading voices—for many decades—in physician-assisted dying, Dr Tim Quill. He is a professor at the University of Rochester School of Medicine. He is also the director of the Center for Ethics, Humanities and Palliative Care, and he is board certified in palliative care. It is a pleasure to welcome you to the program. I can’t think of a better voice to listen to about some of the complexities of these issues. Thanks for coming.
Timothy E. Quill, MD: Glad to be here. Thanks for having me.
Physician-Assisted Dying vs Physician-Assisted Suicide
Dr Caplan: Let’s have you do a little cleaning up of the landscape. What is the difference between physician-assisted dying and physician-assisted suicide? Both terms are around. How do you differentiate those in your mind?
Dr Quill: Many times, the two terms are conflated. Those who believe that this should be a legal option prefer to use the language “physician-assisted dying” rather than “physician-assisted suicide.” Why is that? Well, suicide equates the act with mental illness and with people who have other choices. An important fact is that other languages have more than one word for suicide. There can be rational suicide. There can be heroic suicide, the warrior jumping on a bomb. And there might be suicide for mental illness. The opponents of physician-assisted death would like it to be called “physician-assisted suicide” because they want to equate it in some sense with mental illness.
Dr Caplan: When you say mental illness, do you mean depression?
Dr Quill: Depression, psychosis, an act that makes no sense and could be prevented by good medical care. People who are advocates see it as a possible rational approach when suffering is very hard and there aren’t a lot of other good options. We know that it can be rational because we’ve met people who are in that circumstance who have asked for our help.
Dr Caplan: Do you think there’s a subtle difference in terms of the role of the doctor in physician-assisted dying? People are going to die. For physician-assisted suicide, maybe they’re not terminally ill.
Dr Quill: I suppose it could be the lack or the potential absence of terminal illness. Physicians are also regularly involved in helping people to die. I work in palliative care in hospice. You can take a frame on that to say that we’re at least in part helping people to die better. That’s what we do. So, you want to be sure that you know what we’re talking about as well. There is some issue of clarity that could be an argument in this debate in terms of language.
Dr Caplan: Your field has evolved a lot over the past couple of decades. I think it would be fair to say that you’ve been a pioneer in palliative care as well. We’ve certainly seen palliative care spread out into American healthcare. Not that it’s where it should be everywhere, but it’s certainly available starting earlier for many people. Some physicians are going to say, “Why do we even have this discussion about assistance in dying if we have palliative care?”
Dr Quill: Well, palliative care is the floor in this discussion. If somebody is talking about being ready to die, suffering that was uncontrollable, the first step is usually a conversation about whether they have pain that we could be relieving. We ask them what makes it so unacceptable. What’s the worst part? Tell me more. Tell me more. Most of the time, you’ll learn that they were having pain that they weren’t telling us about that we can address, or shortness of breath. It might be that they are having some spiritual issues and they need to have a talk with their rabbi or their clergyperson, but it also may be that they have reached the end of their tolerance for this process.
Dr Caplan: Do people sometimes reach the end of tolerance for palliative care?
Dr Quill: Absolutely. For example, take people on life support, where we have a settled moral and legal groundwork. The debate 25 years ago was, “How could you possibly allow people to stop life support when they might be coerced?” The answer is that those risks are potentially there, but the best protection is an open process. Make sure that everybody who is thinking about it has access to palliative care, that they have access to the best medical care possible, and then once you’ve made sure that all those things are there, the next step is to listen to the patient. It’s the patient’s life. It’s the patient’s death. That has actually served us very well in the stopping-life-support zone. I think that’s the model we should be using in this zone as well.
Dr Caplan: Do you think that’s the best reason to try to make physician-assisted dying available—listening to the patient and trying to honor what they want?
Dr Quill: Absolutely. When you take a look at Oregon, where this is legal, there’s a lot of thinking about this issue. It’s more out in the open in Oregon. So, what happens in Oregon? One in 6 talks to their families about it. One in 50 talks to their doctors about it. It accounts for probably 1 in 500 deaths. There’s a lot of talk here, a lot of negotiation, and not a lot of action around that particular act. Now, if you take a look at those patients, might they be assisted by other, more openly accepted mechanisms? The answer is, absolutely. Sedation, stopping life support—areas where we have agreement and pretty open practice.
Risks and Concerns
Dr Caplan: I know that you have argued over the years for making some forms of physician-assisted dying available. What makes you worried about it? What’s your biggest concern about doing that?
Dr Quill: I suppose you could make it too easy to access. You could make it so that it’s made available to people who might have responded to other things. Again, I think this is inherently a hard process. I’ve had this conversation with many people. None of them really wanted to die. If I had anything meaningful to offer them, they would have been there 10 times over. So, these are folks who don’t have any good options, and I really do think that that’s the case. I do believe that an open process is key here, because for most of the people that I’ve met, we’ve been able to find fully acceptable alternatives by just looking at all of the options, intensifying palliative care, and having an open process. I can tell them about their options. If I am going to provide one of the last-resort options, I can get second opinions to make sure that I’m seeing everything clearly. Even with my own primary care patients, sometimes when they’re stopping life support and I’ve been caring for them and I was on the inside, I might like to have another outside person make sure that the time is right. Let’s make sure that there aren’t confounding variables that might be altering the decision-making. So, I might have either a palliative care type or an ethics type come and see the patient to take a look and make sure that we’ve crossed all the T’s, dotted all the I’s. It’s very helpful.
Dr Caplan: I’m not trying to put you on the spot, but I’m just curious: People do make requests?
Dr Quill: Yes.
Dr Caplan: How do you respond to them initially?
Dr Quill: I ask them to tell me more about it. Tell me why this is happening right now. Tell me why you didn’t want this a week ago. Why don’t you want to put it off for another period of time? Tell me more. What’s the hardest part? What things have you tried and what have you done? Have you talked to your family about this? Have you talked to your religious person about this? We’ll have a very wide-ranging data gathering so that I really understand where this is coming from. That also tells me what I can potentially fix without assisted dying. I’m looking to try to fix anything I can fix and make it better in any way that I can, but I’m also listening to make sure that this is consistent with who they are as a person. If it was somebody who was very religious in a way that they would have never accepted this but now they’re requesting this, I’m going to need to really understand that. If they were longstanding members of the Hemlock Society, I’m going to say, “Okay, I understand where you’re coming from. You’ve been thinking about this for a long time, but have you looked at all the other options?” I want to understand it as thoroughly as I can.
Dr Caplan: So, in ethics terms, you’re concerned about authenticity. Is this an authentic, real reflection?
Dr Quill: Correct. I also want to be sure that the things that are fixable with other palliative care measures have at least been thought about, if not tried.
Dr Caplan: I get asked this a lot, and I think people would be interested in your thoughts about this: What can be done upstream to better prepare? We hear about filling out your living will or getting paid under Medicare to have discussions about planning end-of-life care. What’s your suggestion, having been around this area for so long? What could the primary care person do to make your job easier?
Dr Quill: Truthfully, I’m not entirely sure that we can put this on the backs of the primary care folks. I think their backs are pretty weighted down at the moment. Also, these discussions are different if they’re hypothetical versus if they’re real. I think having the hypothetical discussion is great. I’m not sure that it necessarily has to be in a doctor’s office. I think we should be redoubling and tripling our efforts in churches and synagogues and temples to have a richer discussion about this. That would do a huge amount of good in this regard. This is about palliative care and hospice. I gave a grand rounds this morning. How many of the trainees had an advance directive themselves? About 2%.
Dr Caplan: People hear about Oregon, Washington, California, and Vermont having legalized forms of assisted dying. Do you think this is something that we should be emulating in other states? Is that coming, and would you support that?
Dr Quill: I do support that. We now have 20 years of data from Oregon, and the practice is being studied on an ongoing basis. The frequency has gone up slightly (as would be expected, in my opinion), but people are going through the process. They’re meeting the criteria. Of the people who get the prescription, only about two thirds of them actually take it. So, for some people, having the possibility is what they really need.
Dr Caplan: Kind of a parachute.
Dr Quill: A security blanket, yes.
Dr Caplan: A rip cord.
Dr Quill: Yes. It’s hugely reassuring to them. It would be reassuring to me, frankly, if I were in that circumstance. I think it’s working well there. Palliative care has also grown there. You want to have strong palliative care, but should we wait until palliative care is perfect everywhere? That’s an unrealistic expectation. We don’t wait for that before we stop life support. If you’re going to stop life support, make sure you get palliative care involved so it’s not being done for the wrong reasons. It’s similar with this. Make sure that people who have experience in palliative care provide input and consultation before you do it.
Criticisms and Legal Issues
Dr Caplan: There are criticisms of the practice where it is legal. One that I would be interested to hear your thoughts about is that there’s not enough psychological consultation, where doctors are seeking a psych consult as part of what’s going on. They’re not where they should be. What’s your response to that?
Dr Quill: That’s a tough question for a variety of reasons. Number one, there frankly are not a lot of psychiatrists who are used to seeing patients who are this sick. The number of psychiatrists who are used to seeing people this sick is too small. Also, there is a normal depression that can occur. People who are thinking about this are not happy.
Dr Caplan: Right.
Dr Quill: I do think that there are some cases where you really need to have a psychiatric consultation. They are usually people with longer-standing psychiatric illness or people for whom this is completely out of character. I think those would be good ones, but requiring a psychiatric consultation on every patient going through this is not realistic. The palliative care consultation is a better requirement because we are used to seeing people who are quite sick. We are used to doing psychological assessments on them as part of what we do. So, to me, the gold standard should be the palliative care consult, and then if there are psychiatric issues, get a second consult for those cases.
I think the best path in the United States is to pass laws state by state until there are enough states that it becomes unfair. You still have the question of how you’re going to deal with this in the states where it’s illegal. We have developed some new options for that. Sedation is much more available now.
Dr Caplan: Yes—tell us a little bit more about that.
Dr Quill: For the toughest cases in New York, particularly of overwhelming physical suffering or even delirium, you can provide a modest amount of sedation, putting people in a relative state of sleepiness. In the severe cases, you can go right to sedation to unconsciousness. That appears to be the Supreme Court decision in 1997.
Dr Caplan: The Supreme Court of the United States.
Dr Quill: Yes. In one of its examples, they said we are able to do that. Again, there’s no real basis in law for that, but that is what is said and we’re practicing as if that’s the case. That gives you a tremendous amount of tools to deal with the toughest cases, and that’s what we do. It doesn’t give you a tool to deal with the patient who is asking you quite directly, who might not be suffering overwhelmingly at the moment, because they don’t qualify for terminal sedation. They’re suffering. They’re worried about suffering down the road and they’ve had enough now, so it’s a mix of psychological and physical suffering. It doesn’t answer that small question.
Dr Caplan: A very common criticism that swirls in this debate is that physicians should do no harm. That goes all the way back to Hippocrates. How do you respond to those who say that doctors can’t commit harm by assisting in dying?
Dr Quill: It would be difficult for me to construe addressing the suffering of a terminally ill patient in some way as a harm. It’s really an obligation. The question is, how can we respond to those kinds of suffering? We are involved in helping people die all the time. Why do we do that? Because we take care of people who are dying. Part of our job, in my opinion, is helping people die better. Again, I say that in a direct way because it irks me when we say that doctors shouldn’t help people to die.
Dr Caplan: Help them to die versus cause their death.
Dr Quill: There are distinctions to be made, but the way to be sure you won’t help anybody to die is to step out of the case as people start to die, which is the norm. It’s the norm now. So, you’re fighting against a disease. You’ve got doctors lined up to take care of you. You decide to stop treatment? Everybody disappears. We need people who are committed to caring for people all the way through to their death as if they were family members, being committed to relieving their suffering. Sometimes that requires helping people to die. It’s not a happy day when we’re taking people off life support. We don’t like to do it. We dream about that afterwards sometimes, but we do it because we have to do it, because the patient is saying that they don’t want it anymore or they’ve had it. We understand it. We all talk about it. We make sense of it and we support each other. Again, we have to do these things. Now, in Germany, aid in dying is legal, but they don’t have doctors do it because of the history there.
Dr Caplan: Yes.
Dr Quill: They have other people who do it. A system could be set up in the United States whereby you provide access, certify, and have another group do it. If you really feel that the issue is that doctors shouldn’t do this in this particular case, there is a solution to that.
Dr Caplan: Right. Switzerland does it that way, too.
Dr Quill: Yes.
Dr Caplan: Let me take you down two paths as we move towards the end of our discussion. One is that people are worried about where we’re headed relative to the cost of healthcare driving people toward requesting assistance in dying because they’re worried about financial toxicity. They’re worried about going broke. They’re worried that although they could try any number of expensive biologics or immunotherapies, they can’t afford those things or the copays are enormous. “I’m taking my grandkids’ future away. They can’t have tuition.” How does that mix in with our thinking about assisted dying down the road? Does it concern you?
Dr Quill: Hypothetically, it concerns me. In reality, I just don’t see it. I see people getting impoverished in these huge medical adventures at the end of their life because even though healthcare pays for some fraction of these adventures, it’s not paying for all of it. There’s a lot of money being spent. If you’re middle class or lower middle class, you’re going to get impoverished. People aren’t choosing this option instead of going that route. They’re choosing that route. It’s the same issue along life support. They’re our most expensive patients. You would think that they would be going off like crazy. They are not. It requires a big, long process. So, it’s a theoretical risk. It’s inherently hard to do and people love life enough. They want to live as long as they can. Even people who want this as an option are usually those who have had some big medical adventures until they got to the point that they’re done. They just want to skip the last part, the really hard part, the part where they’re really dependent, the part where they’re really suffering and not in charge. The people who want this option are the in-charge people, by and large—at least in the United States.
Suffering and Religious Views
Dr Caplan: Let me end with this notion of suffering. Some would say that we’re too conservative in these states that have legalized. The trigger is terminal illness. We talk about 6 months to live. We could argue about whether that’s predictable or meaningful, but put that aside. In some parts of Europe and in Canada now, people say that the issue is suffering. It isn’t about whether you’re terminally ill or not. If I’m going to suffer from horrible depression, if I’m going to suffer from whatever it is that makes me suffer terribly, I don’t have to be terminally ill. Shouldn’t I be able to get some help from a physician?
Dr Quill: Yes, you clearly should. The question is whether you should be allowed to get this kind of help. Suffering is a very broad concept. In my opinion, the more you have terminal illness with severe physical suffering as a major piece of the puzzle, the more you’re on solid ground. The more it’s psychological or spiritual suffering with less physical suffering and less terminal illness, the more the population gets bigger and the uncertainty about evaluation gets more difficult. So, that is clearly a big problem that needs to be addressed. I don’t think this is an option to address, personally. That envelope will get tested as we move along with this, so we are going to need to find edges to it. Severely terminal illness is a good edge. It’s not the firmest edge in the world, but it’s a good edge, and predominant physical suffering as a piece of the puzzle seems to me a good edge.
Dr Caplan: For many people, this area of assisted dying and managing dying ties up in their religious points of view. For some, suicide is just not an option from a religious point of view. They don’t want to see it enter into public policy. There is opposition that says that it’s just against faith to do this. How do you handle that?
Dr Quill: Well, we do live in a secular society, number one, so we need to broaden our minds and think about the religious positions and spiritual positions of the particular people involved. If a particular physician found a request to be unacceptable from a moral point of view but the request otherwise made sense, the physician should do the full evaluation of the patient and try to find alternatives. But if the patient persists, then I think doctors shouldn’t do things that are outside their moral boundaries.
Dr Caplan: Do you think they have a duty to tell the patient about options if they won’t do it or if it’s against their religion?
Dr Quill: I personally think that they have a duty to tell people about the legally available options, and if they can’t provide them, then at least inform them that they could find another physician. If a patient wanted to know a doctor’s point of view on this early on, which does happen, and the doctor said, “I can’t do that,” that is a very important thing for a patient to know early before it comes down to needing it. I would challenge the doctors who say that they can’t provide that to say, “I can’t do that, but here are the things I can do. I’m committed to relieving your suffering. I can do sedation if it comes to that. There are a lot of things I can do and still live within my moral situation, and that has worked for me and my patients pretty well.” If they can’t say that, what can they do? If a doctor is going to refer a patient to somebody else to do all of this because he or she can’t do any of it, it’s good to know that early on.
Dr Caplan: I want to thank you for sharing your insights with us. This has been an illuminating conversation. Thank you for taking the time to be here.
Dr Quill: It’s my pleasure. I enjoyed speaking with you.
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