Suicide, Death … and Palliative Care in America

THE OPEN MIND
Host: Richard D. Heffner
Guest: Dr. Kathleen Foley
Title: Death…Suicide…and Palliative Care in America
VTR: 4/26/02

I’m Richard Heffner, your host on The Open Mind and my guest again today is Dr. Kathleen Foley, Professor in the Department of Neurology at Cornell University’s Medical College and Attending Neurologist at Memorial Sloan Kettering Cancer Center.

Now Dr. Foley is the Editor and in part, author, along with Dr. Herbert Hendon of the recent Johns Hopkins University Press book titled The Case Against Assisted Suicide, for the Right to End of Life Care. She is also Director of the Project on Death In America of the Soros Foundation’s Open Society Institute. And it was in that role that she joined me here several times in the late ‘90s to discuss palliative care in America, which to a large extent seems to be the connection between and among these themes.

Indeed, in their new book Dr. Foley and Dr. Hendon write, “We endorse the World Health Organization recommendation that government not consider the legalization of physician assisted suicide and euthanasia until they have demonstrated the full availability and practice of palliative care for all citizens. In the United States we have a long way to go to reach this goal.” And I want to begin today by asking Dr. Foley, “How come?”. Why do we have a long way to go to reach this goal? Different from other people?

FOLEY: In fact, yes. If we look at countries like Great Britain, Australia, Canada … they have … first of all a model of health care that’s a public health care model. All citizens have access to that care, at varying degrees of care. In this country we have a health care system where access is problematic. Where large numbers of Americans go without care. And we do not have a public health approach. Palliative care, or the care of patients with serious life-threatening illness that is not curative and focuses on symptom control and support of therapies is, in Great Britain considered part of their public health approach. So their cancer care programs include palliative care as an approach. Patients can receive active cancer therapy and they can receive palliative care. If we look at the United States we have a Medicare hospice benefit that allows patients who physicians are able to say the patient has a prognosis of less than six months to receive hospice care. Which requires not only that they be diagnosed with a fatal illness, but that they give up active therapies. In Great Britain, in England, you can get active therapy and palliative care. In the United States you get active therapy or palliative care.

And the fact that we’ve institutionalized these two differences limits, in a way, patients’ access to this care. And now we have really good evidence to show that because of the disparities in our health care system, less than 14% of African Americans access hospice care. So it … there’s a disparity issue for our minority populations in end of life care.

HEFFNER: Now what does this tell us about what kind of people we are? Sounds rather a grim diagnosis to make, that the Brits are that more caring and we are “care-less”.

FOLEY: I’d like to not think that we’re “care-less”. But I think that we institutionalized this kind of a policy with the extraordinary focus in the Medicare benefit of providing acute care. And what our Medicare benefit has not been ever good at is providing care for people with chronic illness. And so if you’re 65 and have a fractured hip, you can get operated on readily. But if you’re 65 and need prescription drugs, that isn’t so easily available. And it’s the way in which we have constructed a system of care that looked at acute care separately from chronic care. Caring for patients with serious life-threatening illness with advanced disease is a form of chronic care. And our chronic care models are limited.

Joanne Lynn has suggested that we should change this Medicare hospice benefit to not make any attempts to prognosticate about when someone might die. But rather to form a benefit that would focus on the functional needs of the patient; on their intensity of illness; on their severity of illness and leave out this construct of six months. And in that way we could provide good palliative care and active therapy together. And that’s been one of the proposals.

HEFFNER: How can a doctor possibly live with that kind of requirement. You have to say, before your patient can go into a hospice, she/he will not live more than six months.

FOLEY: It’s very difficult for physicians to have those conversations with patients. It’s called “the conversation about bad news”. But it’s also difficult for patients and families to hear that. But despite all of this, more than 700,000 Americans enter and use a Medicare hospice benefit.

HEFFNER: That then … you say “more than 700,000 …”

FOLEY: As they’re dying.

HEFFNER: … as if that were an enormous ….

FOLEY: Well, it presents 25% of Americans who die in this country. So one could argue that it’s either a large number that are accessing this care …

HEFFNER: Right.
FOLEY: … or from my perspective, it probably is less than should be accessing this care. And that is why we see this six months as a barrier, but also the fact that we have kept it separate from the active therapy that patients are receiving. So these are, these two barriers … a six month prognosis and the fact that you can’t receive concurrent active treatment for your disease has limited some patients from entering it. It’s particularly impacted the availability of this care for patients with neuro-degenerative diseases, like Alzheimer’s disease; for patients with chronic neurologic diseases. And there’s reason to believe that many of those patients could benefit from this particular hospice benefit.

There’s now new data to show that when hospice care is provided in a skilled nursing facility, that the entire facility, where there would be patients not receiving hospice care, but just standard skilled nursing care in a nursing home; that pain management is better in the entire nursing home. That advanced directives are signed. That patients in the nursing home don’t go back to acute hospitals to die, but could die in the nursing home. So the very presence of hospice care in a nursing home setting, in a skilled nursing facility, elevates the care, the palliative care provided to patients.

HEFFNER: You know, it … that makes me think of a question that came up as I was reading your and Dr. Hendon’s The Case Against Physician Assisted Suicide and For the Rights of Good Care at the End of Life. You say something about … you write something about and I probably could thumb through it and identify it, that it is the fear of death itself that makes us, in a sense incapable of dealing with it, talking about it, coming to some better, wiser …

FOLEY: MmmmmHmmmm

HEFFNER: … more rationale conclusion. I didn’t quite understand the formulation and maybe I’m not expressing it correctly …

FOLEY: Well, I think that what we know about the American culture is that there appears to be clearly an avoidance of, of discussions around death related issues.

HEFFNER: Excuse me. Is that as true in other cultures?

FOLEY: I don’t think … I don’t think we really know that. But if you speak to the French they say, “Well, of course, you live and, of course, you die. And we don’t make distinctions.” And if you talk to the British, they way, “Well, hospice and palliative care have always been integrated into our health care system. Why would we make them different? So, they have, and do act different, culturally than we do. And so I put it in that perspective. I mean I’m sure you’ve, you know, heard the, the statements that ‘for Americans death is an option’. Or ‘Americans don’t die, they’re just underachievers’. I mean these are the kinds of slogans that are used to describe how our culture has viewed these issues. I think it’s hard to, to sort of sloganize that for Americans except to say that we clearly emphasize “cure”. We only talk about “cures”, we only talk about survivors. We have a language that uses that, that focus. Not to say that that is necessarily bad, not to say that that is not appropriate for the people that are using it. But when that kind of a cultural approach in the language interferes with patients getting good end of life care, with families having the opportunity to say “good bye”, than it is a problem.

HEFFNER: Where do patients get the best end of life care, in your estimation?

FOLEY: I would say in this country. The Medicare/hospice benefit has really served as a model of good end of life care. A family member who is seriously ill, who wants to be cared for at home, and wants to die at home, will have potentially available to them a nurse on 24 hour call, their medications provided to the home and paid for. Any kind of medical support systems that they might need for care at home and physicians and nurses and social workers who have enormous expertise in transitioning patients from active therapy to coping with issues at the end of life.

HEFFNER: What …

FOLEY: Getting comfortable, to have these conversations, talking about them, and understanding the physical needs of the patient, the psychological needs of the family and the enormous impact someone who is dying at home has on all those around them. And they have expertise.

HEFFNER: But miracles are not allowed. Eureka, we’ve discovered the cure …

FOLEY: MmmHmmm.

HEFFNER: … for this disease doesn’t enter into this picture at all. Right?

FOLEY: Well, it does in a way, and I think that the wonderful thing of this Medicare/hospice benefit is that you can sign out of it. You can sign right back into active therapy, and in fact, I … you may have seen this … but there was a woman who was given … who became a candidate for therapy for the treatment of her leukemia and who had prior to that had been receiving hospice care. And she signed out of her hospice system back into receiving active therapy and was the miracle that we’d all like to define.

HEFFNER: So what do you need, a doctor on the side who is funneling in information … now, now is the time?

FOLEY: No. I think that what we need to try to address is what and to what extent does real hospice care provide you with the benefit and the needs that you have. And then, what are your alternative options for care? And I’m a major advocate for patients being as aggressively treated for their cancer, or for their any neurologic disease, or for any disease that they have. But to recognize that that aggressive care shouldn’t mean we shouldn’t control their symptoms, shouldn’t mean that we shouldn’t provide them with good psychological support, should not mean that we shouldn’t provide support to their caregivers. So I … the model that we’re arguing for the future, is that we integrate these approaches. And that when we need more symptom control in support of therapies, maybe with patients that have advanced diseases, but we don’t separate the two and say is either/or … you either go for cure or you get care. What we’d like to argue is that it’s not just about cure, it’s about the care that people need through the continuum of their illness.

HEFFNER: Dr. Foley … you’re not an economist …

FOLEY: MmmHmmm.

HEFFNER: … and I wouldn’t want you to be one … but do you believe that we have the resources in this country for us to develop the kind of wise balanced, humane, health care system, including hospice care, including the proper kind of care at the end of life that you would like to see?

FOLEY: Well, in fact, the Medpack Commission that helps to determine the cost of care in this country is, in fact, very much looking at this issue and trying to see what, in fact, providing palliative care to every patient that needs it would cost us. And would this, you know, break the bank? And the evidence would suggest that if we were to provide palliative care for patients, which we would argue was appropriate care, then that appropriate care may, in fact, be cost neutral. Because we wouldn’t be doing inappropriate care, we wouldn’t be taking the person in a nursing home back to an Intensive Care Unit at a hospital at extraordinary cost. But we would be keeping them at the nursing home with the care that they needed. We wouldn’t be giving patients various types of treatments that are known to be totally ineffective because that patient wouldn’t acknowledge that they were dying. We wouldn’t be doing things to patients who are incompetent because they had not signed advanced directives and the family members felt guilty about how they should be cared for.

So having a system that informs the public and encourages the public to understand what their options might be for care, how they can be transitioned for care, is critical. But I’ll give you an example of how this can have a sort of weird twist. The Inspector General in investigating hospice care in this country, identified a series of hospices where the patients who entered them got such good care they lived longer than six months. And immediately raised the issue that this was fraud. And immediately you begin to see how bizarre a health care system we must have in the financing of care, to identify good care for these patients as “fraud”. In fact, they never, you know, fully moved forward with many of the charges. But that’s a serious indictment and it made hospices very, very concerned about taking in patients who didn’t have a cancer diagnosis when they knew they might die in contrast to a patient with Alzheimer’s disease, who might live a longer period of time.

HEFFNER: That shows something about our attitude, certainly, that this is fraud. You know, I come from a period … my, my … I grew up in the thirties and the Roosevelt years when, when we thought we were going to make such great progress in all of these social areas …

FOLEY: Mmmmm.

HEFFNER: … it seems to me that we haven’t done what we thought we were going to do in those years. What makes you think we’re going to now? Doing the right thing. What makes you think we going to do the right thing, other than your perennial optimism?

FOLEY: Because I think that we’re learning what the right thing to do is. And we’re really learning how we can better cost account for these issues. And how we can look to how to provide efficient, high quality care for patients and their families. So I think that we’re in a much more of a period of time where we have the ability to study these issues, to look to see what might be the economic implications. And then, to have a public discussion of what choices we might make.

HEFFNER: In terms of those choices, what do you think will be the impact … impact in terms of everything we’ve been talking about of longer and longer lives?

FOLEY: Enormous. Those will be enormous impacts.

HEFFNER: Which way?

FOLEY: Well, if you argue that people will live longer, but be functional for longer periods of time, than it may not have such an impact. So that if, as people age, it’s functional aging, it’s healthy aging, then the impact may be relatively minimal. But the impact will be significant in sheer numbers. Because every prediction we have is that in the next ten years, two to three times the people that are currently using our health care system as elderly people will require the use of a Medicare benefit. And so we need to change this benefit, we need to adapt now, and we need to plan now to move this forward. And there’s a … I think a great deal of uniformity in how people think and understand what we need. I don’t think there’s uniformity yet in public policy about how we get there. But I think that there’s a much more sophisticated approach to address these issues.

HEFFNER: Do you see any place where the public policy question is being looked at? Is being considered? And is being pushed as perhaps with military policy. And I don’t mean it’s a matter of one or the other.

FOLEY: There is no question, there are a series of groups … Dr. Joanne Lynn runs a center to improve the care of the dying and is now evolving into a palliative care institute. And they’ve done, and are continuing to do with Rand a great deal of research to begin to address these issues and to begin to forecast what we’d need. The Medpack Commission has, over the last three years, a series of reports … that have begun to look at this issue and focus on it, and develop strategies for it. They … CMS that runs our Medicare benefit is looking at demonstration projects.

There are model programs; one called “Pace” which is an all inclusive care program for the elderly, which is one model that joins Medicare and Medicaid. So there’s a lot of opportunity at the present time for thinking about this. And one would hope [laughter] that there will be the opportunity for demonstration projects, so that we can begin to think about how we’d provide this care.

HEFFNER: What you haven’t mentioned, though, and what one could have mentioned in the thirties and even in the forties ….

FOLEY: MmmmHmmmm.

HEFFNER: … where Congressman So and So and Senator Such and Which who were making public policy efforts …

FOLEY: … and there are a series of both … of Congressman who … there … I can name a series at the present time who have been having hearings on these topics and focusing on them, both Senators Kennedy and Frist have been looking at, for example, improving palliative care for cancer patients as part of a quality care issue. Senator Gracely had public hearings on the care of the elderly as their needs for palliative care and the status of hospice care. There are a variety of, again, both Senators and Congressman who themselves have had personal interfaces that did not go well and who see the enormous need for institutionalizing palliative care.

Do we have one person out there as the leader leading this at the present time? I would say “no”. And I think if, if anything else, perhaps the greatest problem about this topic and this discussion, is that no one is against it.

HEFFNER: What do you mean?

FOLEY: Well, no one … everyone thinks, of course, we should take care of people who are seriously ill and of course we should provide palliative care. But no one is such … so that no one … you don’t go to meetings and people say, ‘we shouldn’t do that”. The problem is you don’t go to meetings where people are outraged that we’re not doing it. So I don’t think there’s enough outrage at the present time that we’re not doing it. And so, therefore, the leadership in that way is problematic.

HEFFNER: Is the leadership, to whatever extent there is leadership … at all coming from, or importantly coming from the medical profession?

FOLEY: Enormous leadership. The American Medical Association has been strongly out in front arguing for the need for physicians to become competent in the care of patients and to advocate for policies that would allow them to do that. The American Society of Clinical Oncology, the American Academy of Neurology are two organizations who, again, publicly as health care professional organizations. And we put together a … what is called “core principles of palliative care”. And more than 17 professional organization signed on to this principles of care, focusing on the fact that the professional organizations need to educate their members about this issue. So I think there’s lots of movement forward.

HEFFNER: Well, you say, “educate their members”, what about medical schools?

FOLEY: The medical school issues are still problematic. That is … in a study that was done in the mid-nineties, about five of the 126 medical schools really addressed these issues in a way that we thought, you know, should be appropriately addressed.

HEFFNER: Five of 126 ….

FOLEY: Five of 126 … right. To the … good news in New York State … the Deans of the 14 medical schools came together after the Vaco Commission …. again after the physicians assisted suicide debate and came together and have strategized and are looking at and developing their own curriculum to focus on palliative care and end of life care. So there’s one model of an example. The AAMC, the American Association of Medical Colleges has supported this, but has not necessarily put a great deal of money into it. And a survey among medical textbooks showed that less than one percent of the content of the medical textbooks focuses on this issue.

HEFFNER: This would change dramatically, wouldn’t it, if the students themselves, if those who opt to become physicians were that much interested and were pressing. But they don’t seem to be.

FOLEY: Well, I think that … it’s very hard to say that they should be pressing because if you don’t know anything about it, how can you want it?

HEFFNER: Okay.

FOLEY: So I think though that in the places where there are really extraordinary educational programs and Harvard is one where they have a really well integrated program for medical students. The students there are pressing for it. So I think we have clearly beacons of successful integration in medical education programs. We need more of them. And we need the emphasis placed there. But you know medical education and curriculum changes in medical education are very slow to happen.

HEFFNER: In the two minutes we have remaining … in scientific terms …

FOLEY: MmmHmmm.

HEFFNER: … in the area of palliative care, what are the potential breakthroughs that you see?

FOLEY: Well there have been a series of breakthroughs in pain management, being one of the issues, and better symptom control. And so that we really do have more sophisticated approaches for managing, you know, patient’s pain. If we look at the kinds of advances that we have in understanding mood disorders or depression and anxiety in the elderly and in the chronically ill, we now have a series of trials that demonstrate how anti-depressants may be effective and what ones are appropriate. If you look simply to osteoporosis, the fact that we now have disphosphenate drugs that treat osteoporosis for patients can immediately prolong their skeletal bones from developing fracture. So we have evidence that disphosphenates can be successful. If we look at treating nausea or vomiting, we have again good and new drugs that are appropriate for that management. So we now have a pharmacology to treat many of these symptoms. Where, I think, we’re lacking is in a better understanding of the existential and the spiritual and the cultural issues of patients and families and how we should be addressing them.

HEFFNER: How should we be addressing them?

FOLEY: Well, first we need to understand them, and understand that the patient is only one part of the treatment approach. And providing caregiver support, understanding the burden to caregivers, understanding the needs of the patient’s family is something that we really need to advance.

HEFFNER: Is there an indication that that is happening, particularly in terms of the caregivers.

FOLEY: Yes, there’s enormous emphasis now being placed on the needs of caregivers, but what’s become quite apparent is that these individuals don’t self-identify as caregivers. They just identify as doing the work of caring for someone. And so we need them to be more aware of the kinds of resources they might need to help them provide care for their family members.

HEFFNER: Dr. Kathleen Foley, thank you so much for joining me again on The Open Mind.

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.