Transforming the Culture of Dying, Part II

THE OPEN MIND
Guest: Dr. Kathleen Foley
Title: Transforming the Culture of Dying in America, Part II
VTR: 9/26/95

I’m Richard Heffner, your host on The Open Mind. And this is the second of two programs on transforming the culture of dying in America, with Dr. Kathleen Foley, head of the pain service at Memorial Sloan Kettering Cancer Center, and professor of neurology, neuroscience, and clinical pharmacology at Cornell University Medical College.

Now, last time I began our discussion by quoting from the coda of the Project on Death in America, created by George Soros’ Open Society Institute, and directed by Dr. Foley. I’d like to read from it again. “The experience of dying has changed over the past decades, with many more people enduring prolonged deaths due to chronic and progressive disease. The possibilities for a gentle closure of life are often overwhelmed by uncontrolled physical pain, excessive financial burden, unresponsive care plans, and emotional isolation. There has developed in contemporary American culture a profound dread of death and the process of dying.”

And I want to go on from our discussion of pain last week to this question of dying. And, Dr. Foley, it’s ratcheting the whole damned thing up one step, although I think you might say let’s not mix the two together, pain and dying, in one way, because we can control pain, and we’re all going to go out of this; no one’s going to beat the rap. What have you done in this area of death in America? And what do you think you can do? What are your objectives?

FOLEY: Well, the project really began with the construct that we think that there’s a need to transform the culture, and that there are many facets that are playing into this culture that we need to better understand. So, in part, we want to better understand what the issues are. Why do we not want to talk about death? What is this level of death anxiety? Yet death is all around us. It’s all around us in the newspapers, it’s all around us in the various medical illnesses that patients are dying from now, and it’s constantly being put before us in television programs. So what is this discordance between the fear of our own deaths and talking about it versus the public discussion of death? And attempting to look at that, one of the major issues is that, at this point in time, 80 percent of the American public still dies in hospitals. So that they are dying in institutions. And dying in institutions has led to, in part, an over-medicalization of death. And we want to really advocate for improving the care of the dying. And yet there’s clearly a debate that the way the patients can have control over their own deaths is to have laws and legalized physician-assisted suicide or euthanasia. And that’s sort of polarizing the issues at the present time. And we think that’s not where this discussion should start. We think this discussion should start with a discussion with our dying, about preparing for our death, about talking about death, and, most importantly, of creating healthcare systems and societal systems that respect and care for the dying. So it’s really in that context. Because in our society the dying are the most vulnerable. And we need to respect them. And we need to have systems in place to care appropriately for them. And to do that is problematic when we have so many other pressures in our society that have little to do with caring for the dying.

HEFFNER: What do you mean? What other pressures?

FOLEY: The pressures that relate to the economics of healthcare, the pressures that relate to the caring for patients with curable diseases, public health issues. And we have tended to trivialize the care of the dying in the same way that we have not fairly and appropriately addressed long-term care for our aged population.

HEFFNER: I’m interested that you use the word “trivialized.” Please explain.

FOLEY: Well, trivialized in the sense that we have not given it the credit that it is due, and we have not focused on it as such an incredible life event. And in that sense, when we begin to look at what are the factors in our society that have led to or influenced this lack of appropriate care for the dying, they’re multiple factors. The public perceptions are that all the healthcare professionals want to do is keep them alive. And so there is an enormous concern on the part of the public that all that doctors and hospitals want to do is keep them alive; they won’t let them die.

HEFFNER: Is that an inaccurate perception?

FOLEY: Increasingly more there’s evidence to suggest that it is inaccurate. And again it places the physicians and healthcare institutions in difficult situations where they have patients in whom they don’t know what patients have wanted. Patients have not completed advance directives, have not done what is called “advance care planning,” have not told their families or their relatives how they wish to be cared for, what medical choices they might make, and then they come to a hospital being unable to speak for themselves. And so the availability now of advance care planning, of advance directives, if we could encourage the public to take charge of that, they could at least articulate to their families and to their physicians what they would want, how they would like to be cared for. And this could markedly, I think, impact on their own fear that they’ll be taken to a hospital and things will be done to them that are inappropriate.

HEFFNER: You know, when, in constructing my own living will, I got all the lawyers I need to give me drafts. And then I was fascinated by my own unwillingness at the end, really, to sign my name to something that would seem absolute. And I kept trying to build in little ways out, knowing that the more ways out that I built in made for the ineffectiveness of a living will. So it’s that damned fear at the end. And I must admit that my fear was, going back to our earlier program, of pain. No one would understand the pain that I was feeling, and there would be those who would too quickly pull the plug, and there would be those who would be unwilling to do anything at all.

FOLEY: Well, I think that you’re really pointing out what is a major crisis. There’s a lack of trust in those who care for us, and there’s also a concern that we’ll be abandoned by them. So that those are mixed issues, that they will foreclose too soon on their decision to give you the appropriate therapy. And I think that the public really has much less to be concerned about. I think the role of the physician, which is another problem, in a sense, is to keep people alive, is to care for people, and to do things that will, if anything, promote their life, not their death. And so one of the problems that we have for patients who we know are dying, and for patients themselves who are able to express the knowledge that they’re dying, we need to have better systems in care for that group of patients, for those that have acknowledged that they’re dying, who have living wills, who are articulate about it, they want to live until they die. And now, we’re sort of saying, “Well, you’re a burden.” And this is what I mean in this issue of trivialization of this population. “You’re a burden. You cost too much. We don’t want to pay for you. We don’t want to pay for your drugs. You’re bankrupting your families. Don’t you know it’s time for you to die?” And so that they’re feeling these incredible, subtle, and not-so-subtle pushes to die, or to seek out a Dr. Kevorkian because of these economic pressures that are placed on them, as well as social pressures.

HEFFNER: Now, let me ask how valid those trivial concerns are. That’s a contradiction in terms, but still we can’t dismiss what is happening to our resources as more and more people reach a point at which maybe in those last six months they are gobbling up those resources. No sympathy with that point of view: How can we continue to expend so much money on…

FOLEY: Well, some of that data is quite mythological. In fact, it has always been expensive to die. Since Medicare was introduced, now over 30 years ago, what was very clear from then to the present is that about 30 percent of the Medicare budget has always gone to end-of-life care, has always been spent in the last six months of life. And we should think that, in a way, it should. Because those are, for the most part, dying young. These are individuals at 65 to 70 who had some acute event that brought them to hospital and for which they were then treated. And when they first came to hospital it was not clear that they were dying. They did not have necessarily a fatal illness. So I think that that’s appropriate care, and we shouldn’t confuse that, that they died doesn’t mean that the care that they received was inappropriate. So that looking at the economics of dying, and looking at this in the aging population, we have always spent a certain percentage of our budget on that.

What I think we would argue for is that we need this care to be appropriate. And this care can only be appropriate if patients, the public, and the healthcare professionals, will talk about dying, will tell patients that “You’re dying,” will acknowledge to them that there is no other therapy that is available that’s an active therapy; but will also not abandon them, will also be there for them and take care of them, and say that “I don’t have a treatment any longer that will cure you, but that I wish you to live till you die and to have a dignified death, and that requires medical care.”

HEFFNER: That means that you’re opposed to physician-assisted death, I gather.

FOLEY: The project, itself, has not come out, and has remained neutral on this topic. I personally am against physician-assisted suicide, because I think that’s not what the issue is. I mean, I take care of large numbers of individuals who go on to die with cancer, and that is not their issue; their issue is living till they die, getting adequate pain control, dealing with their psychological issues, and trying to come to terms with their life and with their families, the impact of their death on their family. And that’s really where the public is. What we’re hearing is a narrow focus of Dr. Kevorkian and his 25 deaths. But what the public is concerned about is how they care for their family members, is to having home-care programs or hospice programs that provide effective, compassionate, medically supervised care for individuals at home, that the government helps underwrite the costs of care in that setting, that families are not devastated financially or socially or psychologically by this care. Because it’s very difficult to care for someone at home. And so we need systems in place to do this. The hospice program that is currently supported by Medicare is a very good example of being able to provide this type of care for patients at home. And it’s been demonstrated to be cost-effective. It’s allowed patients to leave hospital, to be cared for in their home settings. So we have, in part, available these kinds of approaches; but we need a much more broader discussion of the respect for this group of patients.

HEFFNER: Do you think our concerns are more attitudinal than attitudes towards death and dying than they are economic?

FOLEY: Yes, I think they are more attitudinal. I think, what patients often say is, “You know, I’ve never died before. So how do you die?” And asking what it will be like, “How will I feel? Will have pain? Will I suffer? And who will be there to take care of me? And who will be there to treat me?” So those are the questions that the public, patients, are asking. Moreover, we, in hospitals, patients cannot be admitted to the hospital to die. There’s not a DRG for dying. So when a patient who is, in fact, dying is brought to a hospital, he has to have a convoluted diagnosis like pneumonia. He has to have some treatment, or the hospital will not be reimbursed. So we have a system, a healthcare-delivery system in place that is, in fact, making it more costly because we’re not acknowledging that people are dying. If you could be admitted to the hospital with the diagnosis, “Process of dying,” then that would facilitate a system of care that could be less costly and equally or potentially more caring, and could attend to issues that patients who are dying need to attend to, which are often more existential and psychological and spiritual and personal, and not necessarily medical.

HEFFNER: I asked you in our previous programs about different cultures and different attitudes to diminishing pain through narcotics, through drugs. Let me ask you the same question about death and dying. Do you find, to your satisfaction, a more civilized — I think that’s the only word I could use — more compassionate attitude towards, and a structure to handle that attitude, towards dying in other countries?

FOLEY: I think previously I alluded to India as a problem from making drugs available to patients.

HEFFNER: Right.

FOLEY: Yet, in India, if a patient is dying of cancer, then it’s a family problem, and the family, it’s not a medical problem; it’s a family problem. So the family then takes care of that individual, and the family comes and spends time with that individual, and it’s the family that becomes the system of care for such a patient. There also is a sense that death is part of life. In the US, it’s been argued that American’s don’t die; they underachieve. And we, in fact, don’t see death as part of life. We’re constantly doing everything in the world to possibly stave off death. And that is a good thing, in one sense, because it has led to incredibly development of technology and advances in medicine and science that are all positive and good. But there is a point at which patients will die, that people will die, and our culture doesn’t accept that. So rather than accept it and make it part of life, we’ve tended to sort of put it back into the hospitals, hide it away from the home, and we’ve made it a medical issue, not a social issue.

HEFFNER: Certainly we can’t think in terms in this country of dying at home in sufficient numbers, because our home, we don’t have those homes any longer.

FOLEY: The data from the hospice movement suggests that upwards of about somewhere between 10 and 14 percent of patients die in hospices, and almost all of those home care situations. So, we are moving in that direction. We have another 10 percent that are dying in nursing homes. That, clearly represents another type of home. And also the fact that we don’t have homes any longer for our elderly, that grandparents don’t live with us, that our great-grandparents don’t live with us and die with us. That they aren’t waited on or have services in our home or someplace else. And, the whole history of death in America has demonstrated that we have moved it out of the domain of the family and into the domain of institutions, into the hospital, into the nursing home, into the funeral home, but out of the home.

HEFFNER: Is there any indication whatsoever that the kinds of concern that you have — and you talk about cultural change — that there have been any cultural changes for the better?

FOLEY: Yes. I think they’re slow. First of all, when we first announced this project, Mr. George Soros received incredible letters from the public which were letters in which they thanked him for thinking this was important. They thanked him because they had spent time taking care of a family relative who had died, and they viewed that as the most important experience of their life, a clearly defining experience for them, and they felt that this is something that other people ought to have, even though it’s difficult, because it’s such an important defining experience. So it suggests that there’s a cultural change out there that exists, and that perhaps the public is ahead of the healthcare institutions and the healthcare-delivery systems. There were a series of letters that were received from people who were advocating more and more for much broader use of hospice programs, and that the public doesn’t even know what hospice programs are, how they’re financed, who can be cared for in them. And again it has suggested that there’s a movement, there’s this increasing number of people dying in hospices and we need and could potentially enlarge that. So that there are cultural changes that are moving back to a more family societal take-charge of this issue rather than as a medical issue.

HEFFNER: Most of the time, here on The Open Mind at this table, someone is saying — usually it is I, I, they, me — about some cultural change. How do you bring about cultural change?

FOLEY: Well, I think in trying to decide who would advocate for this cultural change. How do you understand what are the underpinnings for people thinking about this? And I think the hard part is that the dead can’t vote. The dead can’t tell us what they would have liked in the next election to begin to influence. But their caregivers can. And their caregivers, I think, are the powerful voices that can begin to help us move and change this culture. I think there are several groups now, one the AIDS population, who are a group of individuals who probably will demonstrate for us more than any group has ever done as well the sense of community for individuals taking care of one another, and for a community responding for that group of patients to people with illness, to people with chronic illness for a long period of time. And their articulate ability to live in the shadow of death and to talk about it is educating all of us around them. So I think that a cultural change is happening in the AIDS epidemic that will affect all of us from a sense of community.

A second area that I think is important is the large number of individuals with cancer who are in remission, but who have been given this sort of fatal diagnosis. And that’s a second group of individuals who themselves are now living in the shadow of death, who are able to begin to articulate this and to make choices, so that they represent another group that can be and help move this cultural discussion.

HEFFNER: Do you think that the rest of us don’t realize that we are living in the shadow of death?

FOLEY: Well, all right. Do you realize you’re living in the shadow of death?

HEFFNER: I do, because I’m considerably older. Yeah. And I admit that, as I become aware of that more and more, my thinking has been modified a great deal. Which leads me to say the question I put to you, the question I ask: Could any of us not understand that we all have a death sentence? No one I know has ever even dreamed of not succumbing to that question. Now, is it that we try to look upwards? We try to look beyond that? We try to shut our eyes to that? Is it our religious institutions and our educational institutions that make us or help us not be aware of that death sentence?

FOLEY: I don’t know the answer. I think this is the kind of issue that we keep arguing over and discussing and understanding, that how deep is this, how personal is this, in a sense death anxiety. And it’s different for different for different individuals. And for some it’s an incredibly powerful force; and for others it’s not. And yet it has created a sense, at least in one population, in the caregiver population, the medical world, the death anxiety and the death-denying component of that is so profound that it may be in contrast to the public who is much more able to understand and deal with the issue of death.

HEFFNER: Do you think we might be moving in the other direction? I mean, I know that’s a horrible thought, that we’re going to give less thought to this and we’re going to be less capable of dealing with death?

FOLEY: I think that we might at times want to do that, but I think we’re going to be forced against doing that. With the increasing prevalence of AIDS, with the increasing prevalence of cancer, and with the increasing aged population. We have three populations who are only daily remind us that death is a reality. So I think that the population and the epidemiology of this topic is moving in such a direction that I think we won’t move away from it.

HEFFNER: Are you then going to be focusing in your project on the young or the old?

FOLEY: We debated that. And I think that we have moved in probably dealing with all deaths, but have focused predominantly on the population of individuals who know that they’re dying, and being able to improve care for that group of patients. And, in a way, starting with the most real situation. So the group of individuals who really have an acknowledgment from, at least, the medical establishment, from the healthcare system, that they are dying, and to focus on that group of patients, and then to keep moving that back. However, we have sponsored projects of the care of the dying for children with AIDS. We’ve sponsored projects for better understanding the emotional impact of children’s death on parents, and we’re co-sponsoring with the Hospice Foundation of America a major program on sudden death. So we really are looking at all of these topics. But we began with this with the idea that if we could, at least for the group that was acknowledged to be dying, provide better care, that that would have a domino effect on all these other situations.

HEFFNER: Funny, in a way I would have thought you would have concluded otherwise, to start with the very youngest, because they’re going to get there. And for the rest of us, how much hope is there anyway that we’re going to change our perception of the Grim Reaper? Even the notion of Grim Reaper…

FOLEY: (Laughter) Well, the terms that are used. Exactly. Right. Right.

HEFFNER: …is such a negative. And the religious community?

FOLEY: Well, the religious community, I think, again themselves say that they have not really been educated in issues related to the care of the dying. So that we need them to be advocates, obviously, for this population of patients. So that’s one construct. Our hospital chaplains tell us that patients talk to them much more about death and dying than they do to their physicians. So clearly in the hospital chaplaincy world patients are interacting and talking about death and dying and have almost a permission with those individuals. Yet those individuals feel that they haven’t been educated in all of the issues related to death and dying.

HEFFNER: In our last program, you were talking about changing medical school curriculum in that, indeed, younger physicians coming into the field are being trained better now in the use of drugs. Is that true in the question of death too? Death and dying?

FOLEY: We’ve recently done a survey to look at that issue. And really only a small percentage of medical school programs are focused on education about death and dying. Dr. Susan Bloch, who is the head of our Faculty Scholars Program for the Project on Death in America, has developed a course at Harvard at the Harvard Medical School teaching students about issues related to the care of the dying and both the physical and psychological and existential issues.

There’s a, to take the issue related to religious issues further, I don’t know if you’ve seen, Timothy Leary is now dying and he’s suggested that this is the greatest experience of his life, and has publicly been suggesting that in this process of his dying he sees this as just such an extraordinary experience for we humans that we should all go through it and we should all go through it with knowledge and focused attention to how important a transcendental, spiritual, religious, existential experience this can be.

HEFFNER: Timothy Leary wouldn’t object if I said that is a notion that brings us to the end of our program. Thank you so much for joining me today, Dr. Kathleen Foley.

And thanks, too, to you in the audience. I hope you join us again next time. And if you’d like to share your thoughts about our program today, our fascinating guest, please write: The Open Mind, P.O. Box 7977, FDR Station, New York, NY 10150. For transcripts, send $4 in check or money order.

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.