Death and Dying in America: Part III

GUEST: Kathleen Foley, M.D.
Recorded: 1/11/99

I’m Richard Heffner, your host on The Open Mind.

And this is the third of our series of programs on death and dying in America with Dr. Kathleen M. Foley, Director of the Open Society Institute’s Project on Death in America since it was created by George Soros in 1994.

Dr. Foley is also at the Palliative Care Service of Memorial Sloan/Kettering Cancer Center and is Professor of Neurology, Neuro-science and Clinical Pharmacology at Cornell University Medical College.

Now, the first two of our programs together were initially recorded and broadcast some years ago.

How, close to the end of the American Century, we can look back at their content from a somewhat different and perhaps somewhat better informed perspective. Which leads me to ask Dr. Foley what has changed during these years in this enormously challenging area? What have Americans learned to think and to do better? What are our failures? Dr. Foley, difficult question, I know.

FOLEY: It is and I think it’s hard at the present time to think that you could describe change in such a short period of time. I’ll try to. I’ll tell the things that we know that have changed. But I think that we’re clearly seeing an enormously different rhetoric than we saw in 1994 and 1995.

HEFFNER: Rhetoric?

FOLEY: That is discussion, talk, death talk. Whether we’re really seeing reform is, I think, going to take us much longer to know that and then look back at it. The rhetoric I think that’s changing is both in the field of medicine as well as, I think, in the public domain. The whole discussion about dying and our concerns about it. With a country that’s been through a Supreme Court decision on physician-assisted suicide, it really, I think gave the public an opportunity to begin to look at the issue before them. And I think we saw a debate, you know, shift quite significantly during that period of time. We started initially as purely a “rights” issues and then became a “rights” issue in a very different sense. And it was a “right” to live well. It was a “right” for the quality of the living of the dying. And that was a debate that I think allowed those of us who wanted to improve the care of the dying and to advocate for improving it to really bring out and point out the needs that we have to improve it. So the Supreme Court discussion, debate and final decision I think laid out for us the opportunity for the public to move from a “rights” issue of physician-assisted suicide, which is … of an by itself … an important discussion to one which was really at the heart of the matter. How do we die? Who will care of us, as we die? What are we doing now for those that are dying and what are we doing now for the quality of living of the dying?

HEFFNER: Do you feel that the thrust is in the wrong direction though in answering the specific question concerning physician-aided suicide?

FOLEY: No, I don’t think … I think that the Supreme Court made the right decision. I think they should have handed it back to the States and not co-opt a public discussion. So by giving it back to the States it will allow each state to, by legislation, or by a variety of referendum make decisions and talk about it. And what has become very apparent to us is that as much … as a large number of Americans in surveys are for physician-assisted suicide, when it comes to voting it’s not such a majority and the debates become much more … I think much more practical and real. That is who pays for care for patients at the end of life? Are we appropriately paying for it? Are there economic issues, social issues driving these discussions? And so that … one of the changes that I think all of us have seen in this is one … less of a polarization around physician-assisted suicide and much more of a common ground. Those advocates for physician-assisted suicide, those against it. Those for “right to life”, those for a right to an assistance in death, all come to a sort of common ground that we want to make sure that the patients at the end of life and their families receive appropriate support, both in the form of good medical care, but also in appropriate social supports. All us agree that patients should get good pain management. All of us agree that depression, when it occurs in this patient population and which is a significant problem should be appropriately addressed. So the common ground, I think, has probably made, I think, all of us become much more aware and identify better the barriers that we knew existed, which were not talked about, which now are part of what I’d like to call “death talk”.

HEFFNER: But when we did speak together, our “death talk” some years back …

FOLEY: Right.

HEFFNER: … you were very much concerned … let’s look at the area of pain control … you were very much concerned about how few opportunities there were for doctors in the making …

FOLEY: MmmmHmmm.

HEFFNER: … not just to discuss the matter, but to be trained in paid control. What’s the situation today?

FOLEY: It’s better. As we speak, the American Medical Association is, through the support of the Robert Wood Johnson Foundation, running a program in regional centers around the country, educating physicians about their pain management, better communication with their patients and more appropriate palliative care approaches. So that there’s a major educational program going on sponsored by the American Medical Association.

HEFFNER: Do you think doctors still are as concerned as they were when we spoke first about this question of drug-abuse …

FOLEY: Right.

HEFFNER: … becoming addicted to drugs and the treatment of pain at the end of life?

FOLEY: Well, I think we have to remember that doctors are only a reflection of the culture. And our culture continues to be enormously concerned about that and, I think, inappropriately as it relates to the appropriate management of pain. But again what we’re seeing is, for example, in New York State, through the Department of Health, there have been changes in how physicians can write prescriptions for patients, which will liberate the physician to be able to provide appropriate medication and not feel so constricted by a triplicate prescription form. We now will have a duplicate form, so it suggests a liberalization on the part of the state. And several other states have followed suit. At the same time, in the Supreme Court decision, very, very strongly written into the decision particularly by Justice O’Connor was that if, in fact, you’re not receiving this appropriate care, come back to us. And what was strongly stated in the Supreme Court decision was the observation in fact that when physicians are caring for patients at the end of life and need to aggressively treat their symptoms, their pain, their shortness of breath, and use medication to do so, this is not physician-assisted suicide. This is not euthanasia. This is good care of the dying. And by the Supreme Court making that and identifying that much more medical issue, rather than what physicians might worry about as a legal issue, I think it has given to physicians, almost a strong, strong sentiment of the courts that they are safely providing good care to patients when they aggressively use these medications. And I think particularly in end of life care we see that statement by the Supreme Court as of enormous importance for physicians. Because it really lays out for them that when a patient is dying and may require the use of medications which might in fact hasten their death, that this is good medical care. This is not physician-assisted suicide. And …

HEFFNER: Because the purpose is not hastening …

FOLEY: Because the purpose is to improve the care of the dying, it’s to enhance their quality of living as their dying. It’s to control their symptoms, it is not to hasten their death. And this has been an area of enormous confusion in the public domain, in the professional domain. We have numerous surveys that suggest that physicians think that if they give morphine to a patient who’s short of breath as they’re dying from, for example, ALS … you know this is in a survey that we have recently published of neurologists. Forty percent think that they might be committing physician-assisted suicide, or euthanasia. So that kind of mis-information is thwarting the care of patients. The Supreme Court has made it very clear, national guidelines have now made it very clear. So we see change. Change in the sense that we have opened up the discussion about an area that we didn’t talk about as publicly. We’ve identified areas where there’s a lot of misconception and misinformation. And in that particular decision as well as in physician professional education, I think we’re beginning to see improvement.

HEFFNER: You’re talking now about doctor-to-doctor dialogue.

FOLEY: Right. But it also has to be public dialogue because when family members are in the situation of seeing a family member who’s suffering enormously, their request can be, you know, “Where is Kervorkian … I need physician-assisted suicide”. And yet, they neither … they don’t need either, but rather a very frank, open discussion with their physician about what are their options for care and how they might, in fact, obtain those options, including the aggressive treatment of medication.

HEFFNER: We never spoke … at least sufficiently at least … we didn’t speak about the economic aspect of these concerns.

FOLEY: Right.

HEFFNER: Has there been any greater understanding of the economic pressure upon families at this point. And perhaps the reason that leads to “Where’s Dr. Kervorkian?”

FOLEY: Well I think that we don’t have a national survey pointing out what are the economic barriers. But we have a great deal of information. And we have brought together, through the Project on Death in America, and also in working with the Robert Wood Johnson Foundation a series of experts from both the Medicare Commission, who worked in legislation … and all agree that our system, as we approach and begin to care for patients at the end of life, is enormously hampered. It’s hampered by a lack of understanding of what are the needs of a dying patient and their family members. At the present time in this country we have a hospice benefit. This hospice benefit goes into action once a patient is thought to be … has a prognosis of less than six months. Well, it’s becoming very clear that we can’t really determine who’s dying in less than six months and so that we might need to expand that program to a year. But we’ve also come to recognize that that program doesn’t provide all of the needs for the caregiver as well as for the patient. Particularly the kind of home care support that medications … one economic area that’s quite significant is that within the Medicare benefit pain medications are not paid for. If a patient, an elderly patient on Medicare has a serious pain problem and may also be dying, their medications can cost them $400, $500, $600 a month. That’s their Social Security payment. We need to have a better reimbursement system for pain medications. In the cancer patient population, for example, chemotherapy that’s given in a doctor’s office, is in fact, paid for by Medicare. Pain medications are not paid for. If a patient’s in serious pain, we know that they would wish to die. If we could provide them with those appropriate medications within the framework of a system of care that we have, that might alter their perspective on this perspective.

HEFFNER: Now, you’re going to consider this a stupid question, and I apologize in advance … but how can this be? It is so incredibly illogical, what you’ve just described.

FOLEY: Well, one would never suggest that the Medicare benefit is full of logic.

HEFFNER: [Laughter]

FOLEY: I think it’s been full of a variety of approaches that have attempted to meet the needs of the largest number, you know, of patients. And I think …

HEFFNER: You mean taking the pot of dollars available …

FOLEY: … taking it an dividing it up in appropriate priorities. And I think that it wasn’t really recognized that patients might in fact not have appropriate access to medication. But several months ago I think this was brought home to me so clearly by a patient who we had in the hospital, who was an elderly woman, trying to be, you know … and was, fiercely independent, wanting to life alone which she was maintaining and continuing to do, and was on a medication that she wore as a patch, and it was absorbed through the skin, it was convenient for her. But it was expensive. And she made a decision that she could no longer use these patches for her pain medication simply because she could not afford them. They were not more or less expensive than an oral medication, but she made that decision and then was admitted to the hospital in overwhelming pain, profoundly depressed and that was the precipitating factor. At least as she identified. That was not something that we had put as a first priority. We think it’s an important one and we’re seeing it repeatedly. So we see patients, for example who will go into a hospice benefit for the very important reason that medications are paid for in that benefit. But other things are then not paid for. And so, as we have not begun to speak with the experts in Medicare, speak with those who know a great deal about how you begin to create a program that focuses on the end of life care and the appropriate economics of trying to identify the barriers, trying to identify what we could do about it. And I think … I’m very impressed that there’s a, a real sense of openness and willingness to hear the needs of the population and what we could do about it. When we speak with Congressmen, when I’ve spoken with members of the Medicare Commission, when we’ve had this economic meeting … everyone says, “well, this shouldn’t be … and we didn’t mean the system to do this”. We should be able to adjust it or adapt it. So I think that there is a move to do that. But one has to identify the barriers and I think what is, has probably changed in the last four or five years more than anything else, is the willingness of everyone to look at the problem, to understand and identify the barriers. And to try to come up with approaches to the barriers. And that’s why I think the change is going to take much more than three years or six years, it’s probably going to be ten or twenty years in the making … where we see incremental changes now because we’ve identified a problem.

HEFFNER: Do you really mean ten, fifteen, twenty years? Don’t you really mean, by definition … you’re talking about cultural shifts …

FOLEY: Absolutely right.

HEFFNER: … much, much, much longer and a need to continue to focus on this question which leads me to ask you whether in these past years …

FOLEY: MmmmHmmm.

HEFFNER: … since you became the Director of this project, since it began … what your own feeling is about the argument that is sometimes made about our inability to afford, as a nation, the kinds of care that you want for the dying. What’s you sense of our ability?

FOLEY: Well, I think … my sense as an advocate for the dying would be that they are … should enjoy every other benefit and that we should not make decisions differently for the dying. We should not think they’re a vulnerable population that should be treated differently … either specially in one or specially in another direction. And, again, I think what has informed me enormously over the last several years in this discussion has been how the disabled have closely allied themselves to the dying. In fact, there was a Series One group called “Not Dead Yet” who protested against the physician assisted suicide. And it was so interesting to see how they conveyed a message that they felt that they were … consistently their quality of life was underestimated by the health care profession and by the economic forces in this country. The dying in a sense are in that same way. Their health care … their quality of life is underestimated by physicians. And I think it’s informed me in a different way to look on the care of the dying as a vulnerable population, as one that should be clearly able to receive what we consider appropriate, humane, compassionate care. That this in a way sets, not necessarily a ceiling, but a floor for what we should be at least able to provide for all Americans. And that it’s within our ability to do this.

HEFFNER: But that’s the question that I’m asking …

FOLEY: Because it’s not expensive. And it’s good, humane, appropriate care. It’s some pain medications, it’s home care when appropriate. It’s not using very aggressive methods. It’s not using intensive care units. It’s not using a variety of aggressive transplants when they’re not appropriately indicated. But rather it’s the recognition that in these last days or last weeks of life, a patient may wish to be home, not in a hospital. That’s cheaper. They may wish to be with their family, not with the medical profession. They may wish not to go on a respirator. Not to be on renal dialysis. Not to be receiving expensive antibiotics. But wanting to just peacefully die at home. That is inexpensive compared to the cost of death in intensive care units, which is the major contrast that we have. And to reach that point, every bit of data that we have from the studies that currently exist will require that patients and their families think about what they want at the end of life before they get there. And have communicated that to families. And, you know we’ve talked about advance directives. That area is, I think still problematic because the data we have from the American public is they don’t want to talk to their doctors about this.

HEFFNER: That hasn’t changed?

FOLEY: And … well, I’ll tell you some parts of it. They don’t want to talk to their doctors about it, but they do want to talk to their families about it. And so this information, I think, has helped us begin to say that really we have spent so … a great deal of energy on teaching physicians how to communicate about these issues with families and their patients. And we probably haven’t done as good a job as with the public. So that this broad sense of public conversation about this, I think is critical. And to that end, there are now a series of books that have been published on this. Marilyn Webb, has written a book called The Good Death. Ira Bach, a physician has written a book called Dying Well. Tuesdays with Morrie, the book by Mitch Ablem about Morrie Schwartz and his coming to terms with death and dying in his disease … ALS … have all informed the public in a very different way. And these are becoming, I think, important books that facilitate a cultural change.

HEFFNER: Well, certainly the response to our programs a few years ago, the response was great, it was important. And your Project is now making it possible for us to bring the question of death more frequently to the attention, at least to the viewers of, of this program. I wanted to ask you about the medical changes …

FOLEY: MmmHmmm.

HEFFNER: … the changes that have been made in the ability to handle pain, for instance. Have they been dramatic since we last spoke about them?

FOLEY: Well, I think we didn’t necessarily need them to be dramatic. We needed them to be used and widely applied, and we’re seeing that. We clearly are seeing a much greater expansion within hospitals of both pain and palliative care programs. And particularly palliative care programs. For example, in New York City, through the United Hospital Fund and about a million dollars worth of funding that they received from various foundations, they have, in fact, developed palliative care programs in five hospitals and have continued to sort of nurture the development of about twelve others. We’re in the process of supporting them to now reach into the community and expand these kinds of services into the community in a broader way. Around the country we’ve seen these changes occurring on a state by state level, hospital by hospital level. So there is an expansion in the medical profession of expertise in pain and palliative care, and of the need for hospitals to develop these services, to provide care to patients.

HEFFNER: When Dr. Robert Butler was here we … I raised the question that frequently raised by my friend, Dan Callahan.

FOLEY: Right.

HEFFNER: Again, the capacity to do these things.

FOLEY: Right.

HEFFNER: Now you say what is needed at the end of life is relatively inexpensive.

FOLEY: Right.

HEFFNER: But Dan does sound somewhat like an economist when he speaks about this and he is talking about expenditures at some level.

FOLEY: Right.

HEFFNER: I wonder what your own sense of that is?

FOLEY: I think that I have never been one that would ever wish to have to fight technology and advocate for death. I think that, that within our health care system and really importantly in the profession of medicine, the role of physician should be to keep patients alive. Should be to look for the new advance. Should be to advance what we’re doing. I don’t think that doing that in any way is or negates the need to take good care of the dying. I think they can happen concurrently. But what the difference is, and the critically important difference is, is that we all have to be honest about when it’s time to give up. And we have to find hope, not necessarily in the high technological approach, but in other less highly technical, logical approaches. And I think when you start to polarize those two issues over an economic issue, you really basically come out without an answer. But it’s a great argument. I think it’s not the argument. I think the argument is … we can afford to take good care of patients at the end of life. What we have to make decisions about is in those patients who we wish to do more aggressive therapies to, to see how long we can expand their lives. How much do we want to spend there? That’s the question that we have to ask. Not less to those who are dying. But the question is how much to the other side.

HEFFNER: Who answers that question?

FOLEY: I think society has to answer it. And that’s why I think it’s really important for us to talk about it. Because I think we’ll come to decisions about what we’re willing to give up for something else. And I think also not, in my own opinion … this is absolutely my own opinion … not so much a reliance on the government to fund this. But a reliance on a variety of non-governmental organizations and foundations, etc. to sort of push this envelope forward. But we have to start with some basic delivery of health care for our patients and for their families. We need to do that to just continue to maintain our structure. But if we don’t talk about what we do, and provide for the care of the dying, we can’t begin to talk about what we’ll do for a selected few.

HEFFNER: You know one of our other programs together, I remember when you were making this point and I, I was …when you were talking about how few people take the opportunity to make Living Wills and …

FOLEY: Right.

HEFFNER: … the rest. And I said, “I’m astonished. How could people not feel the great need. And you said to me ‘Do you?’ Are you willing to talk about it. And I said, ‘Yes, I am because I’m so damned old’.”

FOLEY: MmmHmm.

HEFFNER: But … do you …

FOLEY: [Laughter] But that doesn’t necessarily mean that you want to talk about. Because there’s been a … a series of surveys that suggests that as people become older, the less they want to talk about this. It’s a … interestingly, it’s that often times these discussions are held at a much earlier point in life, and as they get older and the reality seems to be more in their face, they’re much less likely to want to address it.

HEFFNER: Give me some … we just have two minutes left …

FOLEY: Right.

HEFFNER: … but give me some numbers. When you say, “as they get older”. You mean as they get into their eighties or nineties?

FOLEY: Yes. There’s a recent survey looking at patients over the age of 85, and asked whether they would give up, you know, some part of their time left for good health. No.

HEFFNER: Mmmmph.

FOLEY: I think it immediately begins to frame the fact that people will live with what they have and would rather be alive than be dead. And that we need to provide a system of care that respects that.

HEFFNER: Do you think that’s the “right” answer? Right is a funny word …

FOLEY: Well, I can’t moralize about that.

HEFFNER: Would it be your answer?

FOLEY: I think it would be my answer. But I think I can’t give that answer until I’m there. And I think that’s why trying to project what you would say at that point in time is, I think, very, very difficult. You … because your life … the minute someone wants to take something away from you it becomes even more precious than it is.

HEFFNER: Does it make any sense then to worry about whether people are doing … having these discussions when they’re young or not?

FOLEY: I think what it does is that the discussion is usually a discussion about many more things than death. It’s about philosophy. It’s about how they view life. And it often gives families the opportunity to use that and to frame that to make a decision. It’s not the decision, but it’s almost giving permission to the guilty daughter or son or son-in-law, etc. that we’ve had this discussion and this is how I would like to live my life and if I couldn’t live it that way then I might not wish to live. Framing that kind of a discussion I think can be very helpful and I also think it gives to a younger generation from an older generation a sort of a, in a sense, what is called an ethical will.

HEFFNER: Dr. Kathleen Foley it’s always fascinating to talk with you about these things, and not a bit frightening. And I hope that the “rhetoric” as you called it goes on. Thank you for joining me today. 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.

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