Guest: Foley, Kathleen
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THE OPEN MIND
Host: Richard D. Heffner
Guest: Dr. Kathleen Foley
Title: The Case Against Physician Assisted Suicide
I’m Richard Heffner, your host on The Open Mind where our topic today is the case against assisted suicide and for the right to end of life care, which is also the title of a new Johns Hopkins University Press book, edited and in part written by Dr. Herbert Hendon and by my guest today, Dr. Kathleen Foley, professor in the Department of Neurology at Cornell University’s Medical College and Attending Neurologist at Memorial Sloan Kettering Cancer Center.
In her role also as Director of the Project on Death In America of the Soros’ foundation’s Open Society Institute, Dr. Foley has several times been my guest here on The Open Mind. But this is the first time we’ve discussed physician assisted suicide, which at this moment is permitted by law in America in only one state … Oregon. And there only because a Federal Judge recently rebuffed U. S. Attorney General John Ashcroft’s single minded efforts essentially to block it by administrative fiat thus accomplishing what he had tried, but had failed to do when still a Republican Senator from Missouri.
Now Dr. Foley’s publisher stated baldly that “Few issues are as volatile or as misunderstood as physician assisted suicide and euthanasia.” And I want to begin today by asking my guest just what physician assisted suicide is and how and why it’s so misunderstood. Fair question?
FOLEY: You know, it’s a very fair question. I think that the definition is important. Physician assisted suicide is providing a lethal prescription to a patient with the intent of both the patient and the physician to end the patient’s life. So, it’s a very clear description of a physician providing the prescription for medication that has only one intent. And the reason why it’s so controversial and in a way convoluted and misunderstood is because physicians have a extraordinary concernedness that they might in fact harm a patient, or in fact kill a patient. And, as a … really a startlingly example to us was a survey that we did of the American Academy of Neurology, looking at the attitudes and behaviors of neurologists toward end of life care.
In the survey we asked questions about the principles of palliative care, end of life care; we asked them about their understanding of ethical issues. And what became quite apparent was that there was a profound misunderstanding of ethical principles and care for patients. And over forty percent of neurologists thought that if they gave morphine to a dying patient with amyotrophic lateral scleroisis, Lou Gehrig’s disease, to treat the shortness of breath of that patient, that that was physician assisted suicide. And so, there is an enormous sense of confusion among physicians, particularly about what is good end of life care and where are they crossing the line to physician assisted suicide.
HEFFNER: But would administering morphine to a person suffering from the Lou Gehrig disease bring about end of life?
FOLEY: Well, in fact, probably not.
FOLEY: So that’s another important aspect.
HEFFNER: You mean they don’t really know.
FOLEY: Well, now there are, there are a series of studies again that have looked at this issue and if you were to give morphine to that patient to provide comfort … first of all, those are the national guidelines that the same American Academy of Neurology has promulgated for good care, for palliative care of a patient with ALS. In fact that’s a recommended and appropriate treatment and seen as very distinct from physician assisted suicide.
However, the physicians in trying to apply these principles are concerned that if the patient dies an hour later or two hours later, they may have hastened the death. But a series of studies now have looked at what is the relationship to treating patients in these last days and moments of life with morphine that can suppress respiration? And the data shows that it looks like they don’t hasten death. And it … maybe this is all part of our sort of broader construct of denying death that’s occurring. And our concern that anything we may do is a causative effect to that death.
HEFFNER: What do you mean “the matter of denying death?”, or denying that death is occurring. Are you referring to some cultural phenomenon that death and dying are anathema to us?
FOLEY: Yes. In short. The … every bit of data that we have and every bit of experience we have is that our medical institutions, our medical educational system, has focused so much on “cure” and keeping people alive, that it’s given the care of the dying and addressing the issues related to dying any priority.
And this lack of priority is actually defined and better, I think, seen in the inadequate that we provide to patients who are dying. So that the, the common line is “well, there’s nothing more to do for that patient.” Or, “that’s not a good teaching case for you to take, because that patient is dying.” And yet for those who would argue strongly for good end of life care and for palliative care, the first response that they would say is that there’s much to be learned from patients who are … have serious and advanced illness and are dying. And much to be learned about how we could care for them.
HEFFNER: Why do you make the connection between physician assisted suicide and the lack …
HEFFNER: … of good care? Palliative care at the end of life.
FOLEY: In a way I don’t think we should necessarily make the relationship. I think that it’s been confused in medicine because aggressive palliative care has been confused with slow euthanasia. For example, the use of morphine … one paper was entitled “is morphine … is a morphine drip slow euthanasia?” So we’ve confused … it’s been confused in that way. And then taken into the discussion of palliative care. I think we should keep them as two very distinct issues. But they come and converge in the setting where patients who have inadequate control of their symptoms, particularly pain will commonly say, “I can’t go on, you need to help me die”. And often times when you say, “well if we could get your pain under better control, would you want to be alive? And would you want to live?” And they say, “Of course.” And when their pain’s under better control they say, “Well, of course, I don’t want to die, I’m not suffering now.” So the two have been related in the fact that if you have inadequate palliative care, if you have inadequate control of pain, if you don’t evaluate and treat a patient’s depression or hopelessness, if you don’t provide them with social supports, they have clearly a desire for death.
HEFFNER: Well you seem to be saying in this book something more. You seem to me and please refute this, if I’m wrong about it …
HEFFNER: You seem to be saying that the presence …
HEFFNER: … of the very idea of physician assisted suicide leads to a situation in which we do less …
HEFFNER: … about proper care for the dying.
FOLEY: One might have thought that would be the case, but I think that if you look to the Netherlands, that is the reality. That having early on in the mid-eighties sanctioned physician assisted suicide and euthanasia, it really suppressed the whole development of palliative care. And available services for patients. That even continues to the present time, were less resources have gone to provide that care. So when a patient has multiple symptoms, when the physicians caring for that patient that little resources to provide the care both from a knowledge base, an availability of drugs and guidelines to do it, the easy option is to end the life of the patient. Because there’s no expertise to improve their pain symptoms, to talk about their psychological state, to improve and provide support systems. So the very presence of a policy for physician assisted suicide makes it just easier to kill the patient than to work hard to improve their symptoms.
HEFFNER: Isn’t that an indictment of physicians?
FOLEY: Yes. And physicians were, in fact, indicted by a report that’s called “Approaching Death.” And it was a report of our Institute of Medicine of the National Academy of Sciences here in the U.S., in which an expert panel reviewed the current care of the dying in the United States. And the indictment was that health care professionals needed to do more. And they needed to do more both from a point of learning and being knowledgeable about appropriate symptom control and supportive therapies and they needed to do more in providing that care to patients. And then called upon, you know, multiple other groups, particularly our government Medicare policy to create the infrastructure and support the care of patients at the end of life.
HEFFNER: Well, we first spoke about this a decade ago, almost …
FOLEY: MmmmHmmm, right.
HEFFNER: And the picture you painted was a very grim picture of knowledge and, not concern but the ability on the part of most physicians to provide adequate end of life care and then, five years later, four years later we did another program and you saw signs for optimism. What now?
FOLEY: I think there’s only continued signs for optimisms. I mean if we even look to the Netherlands, the government there has in 1994 and 95 said, you know, we need to expand palliative care. And they’ve developed six academic centers. And they’re … very much sort of changed their approach to addressing issues related to physician assisted suicide and euthanasia. And I’m not suggesting that there are not problems in the Netherlands, but the fact that they have moved forward to acknowledge how important palliative care is, I think, is an important agenda. The National Cancer Policy Board here in the U.S. has released a report called “Improving Palliative Care for Cancer”. And used the word “improving” very much because of the fact that there is palliative care available for cancer patients, but there is, again, a need to improve it. Palliative care is now sort of entering the language of the care of patients with all diseases. If you look at our international policies that focus on the care of people with AIDS, if you look at our approaches internationally about how we should help developing countries with AIDS epidemics, we’re seeing palliative care as clearly part of an integrated approach to the care of people with AIDS. So I think that what we’re seeing is the importance of policies, the importance of governments to develop policies as part of their public health approaches that emphasize and address treatment and care for patients who disease is not curative.
HEFFNER: I’ll use the word “when”. When we have reached the point at which you can cheer the level of palliative care at the end of life, will you then feel differently about physician-assisted suicide?
FOLEY: I don’t think I’m sure of that at the present time because I think, at least for me personally, the idea of one person asking another to kill them to relieve their suffering assumes that I would be able to understand the suffering of that person. And that’s an extraordinary leap that you’d have to be able to do.
HEFFNER: Why? Why would you have to understand what is being asked of you?
FOLEY: I would need to understand what was being asked of me if, in fact, the request was “I’m suffering so severely, the only way … the only way out for me would be for you to end my life.” I’ve really had that experience from patients.
HEFFNER: I’m sure.
FOLEY: And when I’ve had that experience with them, one was a most telling one … she said that to me, I thought that she was significant depressed. She absolutely denied being depressed; she clearly was in pain, we began to treat her pain, we began to treat her depression, her husband did not want her to die, and during this course of time she improved. And what improved particularly was her mood. And in that, with her depression lifting, I then said to her, “Should I have killed you when you asked me to do that?” And she said, “Well, of course not, I was depressed, but I didn’t know it.”
HEFFNER: All right then, but what about the role of depression, of mental illness in the whole range of questions that come up relating to suicide.
FOLEY: Critical, but not fully understood. And I think what’s now evolving, really nice studies have begun to look at patients’ desire for death. And I think what all of this has done … both improving palliative care and the physician assisted suicide debate, is has opened up the opportunity to talk about these issues with patients. And for patients to be able to acknowledge their desire for death. Not be afraid to not talk about it, and in that … a series of studies have demonstrated that it’s not depression, per se, but depression plays a role. It’s not pain that’s the driving force, but appears to be a combination of some depression, a fair degree of hopelessness, and often a lack of social support. And these complex issues, these complex personal issues and existential issues seem to be the more driving force.
HEFFNER: You mention, of course, in the book, you, you make the point that economics, that concern on patients’ part for the drain …
HEFFNER: … that end of life care is upon family resources is of some significance.
FOLEY: It’s, I think, a very real significance. We’re, as you know, in the next ten years going to have two to three more times the elderly population in this country. The resources that are demanded to care for them, and provide care are significant. And, again, studies that lead to this Institute of Medicine that indicted physicians, this report also pointed out that as many, or as much as a third of family members who have cared for patients with serious illness after being discharged from the hospital and go one to die within a six month period, have lost 50% to 100% of their finances, have become destitute in providing this care. So, would not a family member say, “I’m a burden to you, we can’t afford this care. I have a duty to die.” And having a policy that allows physicians to fulfill that duty to die and a health care system that clearly is not in any way addressing and providing the kind of care we need for families, I think, raises as a policy issue how that could influence patients to feel that they’re a burden and go on to die to save money.
HEFFNER: You know, we say that, and I read that, and I do understand that. But then there’s a tendency, I think, to dismiss that, not to deal with it realistically and say, “Aha, this is a very important aspect of this problem …
HEFFNER: … we show no signs of going in the right direction in terms of making it easier for people financially to be ill. Wouldn’t that lead, one not this one, and not I, I think, to say, “yeah, that’s the way it is … other peoples at other times have talked about ….
HEFFNER: … people provide no useful function …
HEFFNER: … in their terms …
HEFFNER: … physician assisted suicide is right.”
FOLEY: I think it depends on what kind of a society you want to have. And what kind of a society you think that you … and I think if we look at the US society … we have such disparities of care … one would have a great concern that vulnerable people, vulnerable because they’re sick, predominantly, but vulnerable because of many other reasons, would receive less care. And we know this happens. And in fact, one of the chapters in the book we devoted to those who are disabled, who consistently have aligned themselves with the dying, with the point that they don’t, and are not given priority for care. When a patient who requires respiratory support to be on a ventilator wants to be at home, if they don’t have the resources to pay for home care, they often have to be institutionalized. So they don’t have a choice of where they might life because of their medical status. And because of the current support systems we have for the disabled. So I think we only have to look to the disabled to see the model that we’re, you know, potentially projecting to the elderly in this country.
HEFFNER: And what’s going to happen then? When we look? What do you think’s going to happen in this country?
FOLEY: Well, you know, I’m an eternal optimist about this issue. And I think that we’, hopefully, do the right thing. And the right thing will be that we’ll create more appropriate systems of care and we’ll try to balance off the excessive monies that we’re currently spending for inappropriate care and provide appropriate care.
HEFFNER: Now, I have to ask you … what’s inappropriate care?
FOLEY: Inappropriate care is care that is being given to patients … for example patients with very advanced lung cancer who, instead of entering into studies that might advance our knowledge about their, let’s say their lung cancer, are being given chemotherapies that are totally ineffective, or have a 1% chance of working, simply because we won’t open up a discussion with those patients that those therapies are ineffective.
HEFFNER: Now, you say “simply because …”. I find that, as a non-medical person …
HEFFNER: … impossible to understand. You, and all the other doctors I’ve known certainly wouldn’t function that way. How or where and when and why is medicine practiced that way?
FOLEY: Well, I think that we have every bit of data that it’s functioned that way because it’s our culture. And I think … you’re placing a burden on physicians which is not the burden to be placed on physicians. The burden is on our culture, it’s on our society, it’s on people who won’t acknowledge the fact that there is no treatment. That can’t imagine that there’s not something else that could be done. And that have enormous difficulty in becoming and starting to address these issues. And don’t, in any way, think that I … that it’s easy for someone to come to terms with the fact that they may be dying. But, by coming to terms with the fact, that they might be dying, and by knowing what their options for care are and what their options for appropriate care can make an enormous difference in their lives. And appropriate care may not be a next dose of chemotherapy. It might be good hospice care. It may not be the admission to an intensive care unit, but it might be staying home with your family. But if you can’t talk about this, if you haven’t written you advanced directives, if you haven’t talked to your families, how would you family know and, more importantly, how can you make those decisions at the point that you’re very sick. So it requires this much more significant change in our culture of coming to terms with how we wish to be cared for when we’re sick. How we’d like to die. Where we’d like to die. Who would be caring for us, as part of our system of care.
HEFFNER: We joke about the inevitability of death and taxes. Yet I think what you’re saying is we really don’t work on the assumption that death is inevitable.
FOLEY: We don’t. At the present time. Nor can you imagine that you could. And so, I think that the challenge is, and why I’m optimistic about this challenge that we have is that we’re increasingly becoming so much more willing to talk about these difficult topics. And willing to open up and understand, as we make decisions about the kind of care that we’d want, to talk about it with our families. And so, increasingly, and September 11th, I think is an example, of the number of people who post September 11th were much more willing to talk about their lives, and what they would want, and how they might wish to die and what it could be like. And also understanding what their options for care.
HEFFNER: Dr. Foley, when you say that, the question that occurs to me is that when families do this …
HEFFNER: … when friends and families can speak this way, and come to the conclusion, as some will, that they wish there were a physician who would assist them to end their lives at a certain point, are you still going to be opposed when you think in those terms? To physician-assisted suicide?
FOLEY: I think that I, personally, would not be able to do that. So I think, in that sense, that I would be …
HEFFNER: No, I don’t mean that. I mean opposition to legislation, to public policy that permits those who can, those who could, to do it.
FOLEY: I think at a public policy level, every bit of information we have is that it’s not regulatable. There’s not a way that you can be assured that the physician who’s aiding the patient and the patient who’s being aided is protected in a way that you’d want them to be protected. So, unless that could somehow or other change … the … my concern is that this is not something that we could regulate.
HEFFNER: You, I gather believe that physicians will too often impose their own point of view about the patient, about life in general.
FOLEY: Well, we know that. We, in fact, know that from a wonderful survey that was done of psychiatrists in Oregon who were asked if … they were asked their status about their belief system on physician assisted suicide, and then they were asked that if they saw a patient who wished physician assisted suicide, who was depressed, they were asked whether they would, in fact, try to treat the patient’s depression or try to talk them out of it. Those that were for assisted suicide, said they wouldn’t; and those that were against it, said they would. So, one has to remember that as much as medicine is a science, it’s also an art, it also reflects the culture in which we practice. And placing that burden on physicians, I think, is a concern that I have, that that should not be their role in society. I think if we want to move to that kind of a policy, I’d feel much more comfortable with making a decision that, you know, if you’re at a certain age, you can go to some place and receive a prescription that will let you end you life, that doesn’t require anyone making decisions. But to put that power in the bands of a physician and to put that in the hands of medicine I think would potentially undermine the trust that people have in us and our own potential for misunderstanding what patients were requesting.
HEFFNER: Is that, do you think, a very selfish point of view? Protective of your profession.
FOLEY: Well, if one thinks that protecting my profession would be protecting our society and being willing to talk openly about how do we protect our society from itself, then I think it’s not a selfish one. I think it requires a lot of discussion and a lot of thought. And a lot of openness.
HEFFNER: In fact, I couldn’t ever imagine you being selfish, and it is at that point I want to thank you for your generosity in talking about the issue and joining me here again. But if you stay where you are, I’d like to go one a talk about related issues, too, with you. Okay?
HEFFNER: Thanks, Dr. Kathleen Foley. And thanks, too, to you in the audience. I hope you join us again next time. If you would like a transcript of today’s program, please send four dollars in check or money order to: The Open Mind, P. O. Box 7977, F.D.R. Station, New York, New York 10150
Meanwhile, as an old friend used to say, “Good night and good luck”.
N.B. Every effort has been made to ensure the accuracy of this transcript. It may not, however, be a verbatim copy of the program.