Hospice: the “gold standard” of end-of-life-care

THE OPEN MIND
Host: Richard D. Heffner
Guest: Dr. Kathleen Foley
Title: Hospice: the “gold standard” in end-of-life care
VTR: 4/10/03

I’m Richard Heffner, your host on The Open Mind. Earlier this year Howard Heffner, my big brother died unexpectedly of lung cancer. And that he had suffered from the disease for four or five years without symptoms and totally unknown to himself, or to any of us, was a shock.

Though lung cancer itself should not, of course, have come as a surprise for earlier my brother had smoked long and hard. What was a surprise, however, though only because foolishly enough neither my brother nor I had ever been realistic enough to look into the matter, even as we grew older and ever more likely to need its beneficences, what was a surprise was the warmth and comfort and extraordinary care provided to him, in his own home, by hospice care.

And in tribute to him, I resolved in those last days to learn as much as I possibly could about hospice, as the gold standard for end of life care and to share that understanding with as many of my Open Mind viewers as possible.

Where to start to be sure, was simple. With today’s guest, Dr. Kathleen Foley, Director of the Project on Death in America, Attending Neurologist and former Chief of the Pain and Palliative Care Service at Memorial Sloan Kettering Cancer Center, Professor at Cornell University Medical College and just about the best friend a patient could ever, ever have.

Now the question I would start with today may strike Dr. Foley as more than passing strange. But it has to do with how little I and so many other educated Americans know about hospice care and its core belief that each of us has the right to die pain free and with dignity. At home if we wish, with the focus on caring, not curing and with our loved ones receiving whatever support is necessary to allow us to do so.

And Dr. Foley I’m, I’m truly puzzled that as a fairly well educated person who’s been around a long, long time, I knew so little about hospice care. Do you think that’s true of most Americans as I claim?

FOLEY: It is true. And in fact we have numbers to support it. Oregon did a survey when they were discussing their legislation on physician-assisted suicide to begin to understand the public knowledge. And less than 10% of people knew what hospice care… And I’ve done my own, you know, small surveys, with groups of elderly patients at Memorial who are being treated there. And they don’t know the difference between hospice care and long term care and long term insurance.

And yet hospice care is a Medicare benefit. It’s an entitlement program. It’s a program that if you’re over the age of 65 and have a terminal illness that you can receive hospice care. And your care will be fully covered by the Medicare benefit. And your pain medications and other medications will be paid for. And you can, and must, almost, remain at home. That psychological support, support to the caregivers, bereavement support to the families once the patient dies continues for up to a year.

And this is, you know, an extraordinary benefit that’s been in existence since … in law since 1982. But really began as a grass roots movement in this country.

HEFFNER: How did it begin, by the way?

FOLEY: It’s, it’s quite fascinating. It really began as a grass roots movement. It began in the early seventies. It came, really, from the model that Cecilia Saunders has promulgated in England in 1967, where she had developed St. Christopher’s Hospice, an in-patient unit, where she cared for dying patients, treated their pain; respected the fact that they were dying; was not fearful that they were dying; and in a way, revolutionized how we think about the care of the dying.

In the US in the early seventies as there was an increased awareness of too much medical care, the medicalization of death, this broad, grass roots movement began to develop voluntary hospices in small communities around the country, where families and, and communities wanted to take back the dying. Family members and patients didn’t want to be in a hospital, they wanted to be cared for at home; they argued for better symptom control. And they began these voluntary hospices.

And they were so successful in meeting the needs of the communities that by 1982 a Federal law was put in place that supported this as a Medicare benefit.

HEFFNER: It’s so interesting you say “take back the dying”, what did…

FOLEY: Right.

HEFFNER: … you mean?

FOLEY: Well, what was happening at that point in time and what people were experiencing is that patients were dying in hospitals. At that point in the US about 80 to 90% of people died in hospitals, not at home. Yet these were family members that said “Well, I’d like my Mother or Father to be at home. I’d like them to be able to get pain medication and pain management at home. To have their symptoms controlled. For the family to be together. The experience that you’ve had.

And they were seeing that there wasn’t a system that facilitated that. That when someone was sick, you were in the hospital. You died in a hospital and that was our existing system. But even more profoundly, no one was even willing to talk about the fact that someone was dying. To discuss what were the needs of the family. And to address what were the needs of a community to embrace this person and to take care of them.

HEFNER: How did, how did we move from the home, where by definition we must have been, where the dying must have died …

FOLEY: MmmHmm.

HEFFNER: … to the hospital.

FOLEY: There’s a … the, the whole historical development of the creation of hospitals and the role of hospitals and the medicalization of death is part of the history of medicine in this country, really beginning in the late thirties and forties and probably peaking by the mid-seventies. And we had high technological care settings, we had Intensive Care Units, we had Cardiac Care Units, and that medicalization of very sick patients and their care made really this grass roots movement, which was anti-medicine, they were really anti- the establishment and they developed outside of medicine. They developed outside of academic medicine.

This was not your major center developing a hospice program. This was a community, voluntary group of individuals who said, “my family member didn’t die well, they had too much pain and we need to take charge.” So it was anti … in a way … anti-intellectual, anti-medical, anti-establishment that began this movement.

HEFFNER: Did the medical establishment respond in kind? Being anti-hospice?

FOLEY: Yes. It, it responded in kind in the sense that it did not embrace the hospice programs. It… was slow to, to move to embrace it. But what we’re seeing now … thirty years later … and really almost 23 years later … from the Medicare Hospice benefit … is the recognition that health care professionals have failed in their care of the dying. And they need to embrace hospice and they need to develop palliative care programs in hospitals. And we’re beginning to see this bridging … what’s called “bridging the gap” of hospice care at home and the care of patients dying in hospitals.

And so one of the concerns of the hospice movement is that we may, once more, again, try to over medicalize the care of the death… the care of the dying by placing palliative units in hospitals.

HEFFNER: Now, now, please elaborate upon that.

FOLEY: Well, the, the current system of hospice care is very much a nurse managed program.

HEFFNER: MmmHmm.

FOLEY: Patients … first of all, patients must agree to participate in a hospice benefit. When they do so, they give up aggressive care. They give up chemotherapy. They give up radiation therapy unless it’s specifically needed for, say, a hip fracture, or something like that. And all of the focus is on aggressive symptom management. That’s the way our law has been created. The difficulty that that has led to is that in 1982 that was probably fine. But in 19…in 2003 the difficulties that we see is that there are many patients that want to be treated aggressively to the moment they die. Even though those treatments may be ineffective, their perspective is that treatment is better than no treatment, even if treatment is ineffective.

And this has been … can be enlarged further on the fact that people find it so difficult to acknowledge that their illness cannot be treated. And that they want treatment. And the system has further encouraged that. So that our whole culture is focused on cure, not care. And has tended to diminish this construct of care.

With that then, cancer patients who normally … in the beginning of the benefit … would enter and be in the hospice program for, you know, as long as a 180 days, now are entering at 25 days before they die, or 10 days before they die. The difficulty with that is that hospice care, which was meant to provide comfort and symptoms control over several months of a patient’s life, is narrowed down to just the last few days of life.

The difficulty for patients is that they have … it’s creating a sort of idea that either you get very aggressive care or you get palliative and hospice care. And making palliative and hospice care seem something less than aggressive care. Of greater concern, I think, to all of us is that those patients who are getting very aggressive care may not be getting good symptom management, may not be getting good treatment to really expand and improve their quality of life. And so the debate now, and the discussion is, how can we not make this the sort of black line, you either get aggressive cancer care or you get palliative care. But we link them together, that we improve this system in a better continuity.

Now, in your brother’s case, he was willing, at that point in time, to acknowledge that active therapies were not going to be helpful for him. And he could come to terms with that. Or in someway, come to terms with that. Many people have difficulty with that.

HEFFNER: Does the medical establishment still have difficulty with that?

FOLEY: Yes. Yes. But I don’t want to blame the medical establishment. I think that we’ve created a benefit that is then creating and institutionalizing a system that isn’t probably the way it should work. And so what people are attempting to argue for … we’ve recently released a large report from the National Cancer Policy Board, called “Improving Palliative Care for Cancer”. And 65 to 70% of patients who receive hospice care, have a cancer diagnosis.

Arguing for the fact that we need demonstration projects, were we begin to transition patients who are receiving aggressive cancer therapy to palliative care and hospice care, in that they could receive these together in a better fashion.

HEFFNER: Why is hospice care, so largely, and the figure you use …65% identified with cancer patients?

FOLEY: Historically it had been identified with cancer patients, probably because of the fact that with cancer patients we can best prognosticate about when they might die.

HEFFNER: MmmHmm.

FOLEY: Whereas with patients with congestive heart failure, or chronic obstructive lung disease or Alzheimer’s disease, we’re not capable of prognosticating about when they’re serious illness may, in fact, be in it’s most … last few days of life, or last weeks of life. But again, recognizing how critical and how important the hospice movement has been toward the care of cancer patients … 700,000 patients a year receive hospice care in this country. That’s about 25% of all patients dying. And the recognition, as your experience, is that this is such extraordinary, loving, kind, compassionate, competent care that we need to expand this to these other groups.

But it’s hard to tell a patient with congestive heart failure, who has, you know, a 50% chance of living another year, that they could die in six months and a doctor has to authorize this. So, that … this, this idea of using prognosis as an entry criteria is being questioned. And it’s being argued, Joanne Lynn, among others, has argued that we should change it to really focus on the burden of disease and the functional ability of the individual, not how long they’re going to live to decide who should receive hospice care.

HEFFNER: It’s much more difficult to write that into a statute, isn’t it?

FOLEY: It is much more difficult, but again, I think we’re getting better about understanding that. But we don’t, I think, fully understand what implications that would have to the economics of supporting the hospice benefit.

HEFFNER: Would you recommend that change?

FOLEY: I think that we should do demonstration projects. Because I think the idea of a six month number was not created in 1982 on the basis of extraordinary information or clear actuarial data, or risk adjustment information.

HEFFNER: Picked out of a hat?

FOLEY: It was picked out of a hat.

HEFFNER: Okay.

FOLEY: So, we could pick another time out of a hat … we could say a year and then look at it as a demonstration project and see how and to what extent that might make a difference.

HEFFNER: What kind of position … psychologically …

FOLEY: MmmHmm.

HEFFNER: … and professionally …

FOLEY: MmmHmm.

HEFFNER: … does the time requirement place a doctor in?

FOLEY: Well, there’s an attempt to say that the doctor will obviously give their best opinion. But there have been a series of cases where hospice programs have been accused of fraud for entering the patient who then lived longer than six months.

HEFFNER: Mmmph.

FOLEY: And, ahem, so they took such good care of the patient that the patient lived longer than six months. And now the hospice is accused of fraud. So, there is, I think …

HEFFNER: Seriously, the hospice …

FOLEY: Quite seriously was accused of fraud by the Inspector General. This was written up in quite a great detail by Lucette Lagnato in the Wall Street Journal and as a result of that particular article, there was a minor change in the wording for how doctors could be protected as they defined how long a patient might live.

HEFFNER: By the way, what, what technically … what technically what is the requirement that …

FOLEY: The requirement is that you have a terminal illness; that you will die … that your prognosis is six months or less. And that you will not receive active therapies, so you will no longer receive chemotherapy, or radiotherapy … that will no longer be paid for. That any medications that you need for pain management, for symptom control will be paid for; that you spend … that you’re cared for at home. That when you … and that you’ll have a nurse, a social worker available and a … your own physician can remain the physician in charge, or the medical director of the hospice program.

That your family will receive support through the social worker, through the nurse and that in the last days of life, care will be provided and escalated as needed with 24 hour nursing care. Or home health aides, as needed. And that your family will be followed in a bereavement program for a year after that time. And these programs are very community based. The programs must have 20% of their staff … needs to be volunteers, who work in the program and who are specifically educated and trained to work as hospice volunteers.

HEFFNER: That is a requirement, that 20%.

FOLEY: That is a requirement, that volunteerism is a part of the effort. That there be a chaplain and services available for patients for religious and spiritual support. And there be the ability, if the family is so burdened by caring for a family member that there be respite care. And so that the patient could be admitted to a hospital or to a in-patient hospice program for several days or for a week, to give the family support and to reduce the burden.

HEFFNER: And I gather from what you’ve told me that most hospice care does take place at home.

FOLEY: Yes. There are … right now approximately 3,100 operating hospices in the country. And 90% of the time, a patient’s care is spent at home.

HEFFNER: And the quality of care must be a question then if there are that many jurisdictions. Or units.

FOLEY: Well, again, the National Hospice and Palliative Organization has set standards of care demanding really that there be … quality control in all of these units. That the nurses … the medical directors …the volunteers all be specially trained and follow protocols. And it’s quite extraordinary how the hospice programs throughout the country have been really the main force of pain management for dying patients. They are really at the cutting edge. They’re the best educated, the most able to make decisions about how patients should be managed, within probably the largest experience. So there’s no question that any large medical system there’s variations in quality. But every attempt is to strongly support … the education of these health care professionals.

HEFFNER: Since we first spoke about death and dying in America and that’s a long time ago now, have medical attitudes towards the use of pain relief mechanisms changed considerably in your estimation?

FOLEY: I think we would say “Yes” that they’ve changed. I think the hospice movement is probably the … an example of how a health care delivery system, such as hospice care has really spread the knowledge and the skills and advanced pain management in this country for the selected population of people it cares for, the dying … for the most part … cancer population. We also think that with now the new standards that the Joint Commission on Hospital Accreditation has put in place, that every hospital and nursing home and out-patient clinic that follows their and is accredited by them must have pain accessed and descriptions of its management as part of their quality care programs. We’ve seen them advance at that level.

I think where we’re still lacking in that despite the extraordinary science, we’re still not teaching this in our medical schools in a major way and we’re still not demanding that every resident in internal medicine or neurology or oncology at the fellowship program learn these issues. So we continue to have this gap in education. We continue to have this gap in our textbooks about appropriate pain management.

And yet, at the same time, enormous public awareness … a quality chasm report that was just released by the government put down … listed twenty areas that we need better support and better understanding to ensure better quality. Pain in advanced cancer was in that list of 20. Not only in the list of 20, it was in the list of the first four. Suggesting that this was an area where we needed to push hard for better quality.

HEFFENR: How do you, as a person who’s been in the field of medicine and teaching medicine for so long … how do you explain the fact that medical schools have not … sufficiently … adequately … to the need, made their changes here.

FOLEY: It’s really hard to understand. Again, I’d say that we’re seeing some changes. But it’s building a field. And at the present time I still think we’re probably not at the tipping point of having that many advanced practitioners, role model educators … and scientists who can lead this charge within medical schools.

HEFFNER: I don’t understand that.

FOLEY: It is an issue of funding …

HEFFNER: Ahhhh …

FOLEY: It is an issue of focusing on “this is important” and I think, again, one would argue, and it has been argued that this is, again, cultural. That medicine has focused on disease, not symptoms.
Pain is a symptom. And we have not developed our courses in our medical schools around issues of symptoms, but rather issues of diseases. And so pain occurs in every disease. So it needs in a way to be embedded in each course about each of those diseases. But it would require then that those teaching in that area need to become expert with this body of knowledge. And they haven’t done it.

And there’s a core curriculum that the International Association for the Study of Pain has put forth to be implemented. And again we’re seeing some schools do it well … Cornell is an example where that happens … because we’re on the faculty and we teach students. And other schools don’t have that depth of faculty to begin to teach this. And we’re continuing to suggest that this needs to be mandated.

California, as an example, mandated it. It said that every student in their California State Medical Schools, of which there are several and important, needed to be taught about pain management by the time they graduated. And that in the continuing medical education programs, it should also happen.

In New York State we tried to mandate this and that was not successful. And I understand how no one would like education and specific aspects of education mandated. But it’s important and we need to do it.

HEFFNER: In New York why, why was it not greeted approvingly? This change.

FOLEY: I think … I think that’s it’s greeted approvingly that we should do so, or do something about it … everyone … see no one is against this … no one does it [laughter]. What we found in New York was that … that no one … that there was a very strong sentiment about mandating a specific topic to a medical education field.

HEFFNER: Seriously, that was the key.

FOLEY: That was the issue. It was the mandating issue … there was no one who was standing up against pain management. Rather it was that they didn’t want mandates, and this would be an example of a mandate.

HEFFNER: Just at the end of our program now …what about Federal government attitudes towards drugs?

FOLEY: The drug enforcement agency is empowered to license physicians to write prescriptions about opioids or narcotic drugs. And yet they do not take on, as their responsibility, to educate physicians. So the education does fall, predominantly should fall to the medical schools and to the various specialty organizations and to the pharmaceutical industry. And, in fact, to the credit of the pharmaceutical industry, they’ve perhaps been the best educators about pain management in this country. Again, at a national level there’s been a very, very strong emphasis to suggest that we … that these educational programs be further expanded, be part of, you know, Federal educational programs and there’s advocacy and lobbying occurring at a Federal level for even Federal legislation that would move this forward. But that, again, has not happened.

HEFFNER: Well, our tale today has been one of progress, certainly … in terms …

FOLEY: MmmHmm.

HEFFNER: … in terms of hospice care …

FOLEY: Right.

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

FOLEY: Thank you.

HEFFNER: 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 $4.00 in check or money order to The Open Mind, P. O. Box 7977, FDR Station, New York, New York 10150.

Meanwhile, as another old friend used to say, “Good night and good luck.”