The MacNeil/Lehrer Report; Hospice

ROBERT MacNEIL: Good evening. Last February we devoted a program to what we called "The Jane Zorza Story," the death of a young woman from cancer in a British hospice, a new kind of nursing establishment for the terminally ill. We received an enormous reaction to that program, and tonight we want to follow it up. In the last few months the hospice movement has made great strides in this country. Yesterday, at the first convention of the National Hospice Organization, Secretary Joseph Califano announced that HEW is considering experimental government funding of hospice treatment. The idea was also supported by two Senators with very different political views, Edward Kennedy and Robert Dole. Tonight, the possibilities and the limitations of the hospice idea.

Jim Lehrer is off; Charlayne Hunter-Gault`s in Washington. Charlayne?

CHARLAYNE HUNTER-GAULT: Robin, "hospice" is a medieval term for a way station where travelers could rest. But today hospice isn`t a place so much as it is a theory of care for the terminally ill. Started in Britain in the late 1940s, the hospice concept stresses humane care and relief of pain so that the dying person may make fuller use of the final days. Ideally that would mean that the patient would spend those days at home. Teams of nurses, backed up by physicians, would visit often, providing the entire family with whatever medical and psychological help it needed to ease both emotional and physical pain.

It is when home is not an option that hospice becomes a place as well. The movement has barely begun in this country, but hospices are springing up in such diverse places as Tucson, Arizona; New York City and Hazard, Kentucky. Robin?

MacNEIL: Two years ago, after a routine checkup, Patrick Felker was told that he had cancer of the colon. Felker had the tumor removed, but doctors found that the cancer had already spread to his liver. He under went chemotherapy; it was unsuccessful. Next Felker went to the National Institutes of Health in Washington for experimental treatment. After eighteen months doctors told him nothing more medically could be done. He went home. Patrick Felker knew he could not get well, but he did want to die well. He was interviewed by a local Washington, D.C. television station.

PATRICK FELKER: The biggest advantage, in one word, in the hospice program, whether it`s an inpatient or outpatient arrangement, is your freedom. And that`s...

INTERVIEWER: And the dignity of it.

FELKER: That`s right. And the dignity of dying in a situation where there is no better way of ending your days.

MacNEIL: Three weeks ago Patrick Felker died at his home in the Washington suburbs. Our reporter Monica Hoose talked with Mrs. Felker about why the family chose the hospice alternative.

Mrs. FELKER:I think we decided because I had some knowledge of it through my nursing experience and had heard about it, and we were at home with a decision to make and had to assess what our needs were at that time. And we felt that the best way to handle what our needs were at the time were offered by the hospice program, were offered by an experience where Pat could remain at home, remain pain-free, and still be able to enjoy the things around him and have control of his life, have some of the freedoms that he had enjoyed before, even though he was terminally ill. And the whole thing just seemed to be something that allowed us to have a very tragic experience to be a beautiful experience at the end, and it really offered us everything that we expected of it.

MacNEIL: Dr. Josefina Magno was Patrick Felker`s physician. She`s involved in the hospice movement.

Dr. JOSEFINA MAGNO: Since this is the first time you are here, I`m not going to talk about the hospice concept at length because I presume that you sort of all know what it`s all about...

MacNEIL: Once a week Dr. Magno meets with nurses active in the hospice movement to lecture and answer questions. Her specialty is care of the terminally ill. She`s a referring physician for hospice programs in the Washington area.

MAGNO:...The unit of care in hospice is the patient and the members of his family. So while the patient is very important, while we all know that hospice care is a concept of care the object of which is not to save the patient`s life -- because when the patient is admitted into hospice that presupposes that he`s nearing the end of his life; it`s not going to try to prolong that life, either, because a life that has reached its end should not be unnecessarily prolonged, but it`s not a prolonged dying process, either-- so our objective in administering hospice care is to make that patient as comfortable as we can, to make the last days, weeks or months of that patient`s life meaningful ones, not only for him but for the members of his family. The patient who is dying usually has three main problems; you have heard all these three problems said over and over again. And these are pain, and these are loneliness, and loss of control. We should try to take care of the patient at home first as long as it`s possible. We need a hospice facility for two reasons only. First, if the patient`s symptoms cannot be managed at home, it`s necessary to transfer that patient to an inpatient facility, a hospice facility, so that the patient can have twenty-four hour nursing and medical care. The second reason for an inpatient facility is if the family can no longer take care of that patient at home.

MacNEIL: The Washington Home, in a quiet, residential area of the District of Columbia, is part of a pilot project that`s testing the hospice concept. There`s a six-bed hospice unit within this long-established nursing home. Nurse Carol Ann Bingham is in charge of the hospice wing.

MONICA NOOSE, Reporter: How is the hospice unit different from a hospital or a nursing home or extended care facility?

Nurse CAROL ANN BINGHAM: We`re not doing anything any differently than would be done in a nursing home. There are differences, that you have to be attuned to what that individual person wants at that individual time, and you can`t say Well, wait, I`ll be back to do this for you a little later, because a little later may not be the appropriate time.

NOOSE: How easy is it to incorporate the hospice concept into existing hospitals and nursing care facilities?

BINGHAM: It`s very difficult for the individual professional person to make a transition from one room where all of your efforts have gone toward saving some one, to then the next room where you`re doing nothing to save that individual and you`re making every effort to make them comfortable. That`s a very difficult transition to make. And so the hospice allows us the opportunity to be in that mindset all the time.

Mrs. FELKER: Pat had been sick a long time, so a lot of the grief experience happened actually before he died. Dr. Magno and I had chats at her house, and she would ask me how I was coping, and she was supportive after that in planning what we`d do from here, where we would go from here, and if the children were all right, if they were back to college and back into school again and if they were adapting well to the situation or as well as could be expected. And she was extremely supportive in that respect. I didn`t feel at all that suddenly I was cut off. It was just a continuing deep relationship.

NOOSE: Do you feel the hospice program is the answer for everyone facing a similar type situation?

FELKER: Pat was always a very free person, he always enjoyed his freedom, he always cherished his home and his family, and I have a sense that he knew he could enjoy by being at home. And he had a great deal of confidence in us as a family that we could handle it. So he chose that. For families that felt this was very important to them and wanted to do it, they certainly would have all the support that was needed to help them get through it. I`m convinced of that -- if it was what they chose. But I think it has to be an individual choice. It certainly is, from where I stand and from where I stood a few weeks ago, by far the most beautiful choice, I feel, because I loved Pat a great deal, and it gave us a chance to have a real, total love experience and share everything -- not just the good times.

HUNTER-GAULT: The first hospice home care program in this country started four years ago in New Haven, Connecticut. Construction is now under way on a forty-four bed inpatient facility. Expected to be completed sometime late next year, the New Haven Hospice will serve as a backup to the existing home care program. Dennis Rezendes is the executive administrator. Mr. Rezendes, the Washington Post today quoted Cecily Saunders, the creator of the hospice movement in England, saying they`re springing up everywhere in this country. How big exactly is the movement now here?

DENNIS REZENDES: There are approximately 200 groups in different stages of developing a hospice program of care in forty-one different states, plus the District of Columbia.

HUNTER-GAULT: Do you agree with Ms. Bingham, who just said in the film that hospice isn`t that much different from a nursing home?

REZENDES: No, I do not. I think Dr. Magno pointed out some of the differences and also the wife of that patient. First of all, the hospice program of care looks upon the family as being the unit of care, and you keep hearing, these days, from some of the professionals, about the patient. But the family`s the unit of care, and that`s very important. Dr.. Magno, the good physician that she is, was relating to the wife of that patient. Beyond that, the hospice program of care continues with the care during the course of bereavement. It`s essentially, in this country, a home care program in need of beds to back that up. And that means twenty-four hours a day, seven days a week services available in the home.

HUNTER-GAULT: You`re building a forty-four-bed facility in New Haven. Doesn`t that change the nature of the idea when the patient is taken out of the home and put into an institution, as it were?

REZENDES: No, not really. As Dr. Magno pointed out, there are those instances and those occasions where the most appropriate place for the patient to be is in an institution, in a hospice -- either because there is no one at home to provide the care or because the nature of his illness at that time, his pain for example, requires twenty-four-hours-a-day observation. He or she goes into the hospice, the pain is brought under control, or whatever the symptom may be, and the patient gets discharged and goes back home again. And so you need that kind of a facility to back it up. Our forty-four beds, for example, are to serve the entire state of Connecticut, 3.2 million people.

HUNTER-GAULT: Why do you feel so strongly that this is the most compassionate way of handling the terminally ill?

REZENDES: I don`t know that I feel so strongly, as you put it. The hospice program of care is of course a very compassionate way; it`s a set of attitudes. The hospice staff become involved with the patient and with the family. They make a personal investment, if you will; and because they do that the patient and the family are receiving of it. We also feel it`s very important for those who are giving care to our patients that they be recipients of what the patient and the family in turn want to give, that the patient and the family have an opportunity to give as well, and we have to receive. We see ourselves learning from our patients and our families.

HUNTER-GAULT: All right, we`ll come back. Robin?

MacNEIL: While no one is likely to argue against the importance of caring for the dying, some are cautious about abandoning aggressive medical treatment. Dr. Timothy Gee is head of the Leukemia Division of the Memorial Sloan-Kettering Cancer Center in New York. Dr. Gee, what is your basic feeling about the hospice idea?

Dr. TIMOTHY GEE: I`m all in favor of it. And this may sound strange coming from a person who deals with aggressive chemotherapy, but I think that there is a place for it and there is a definite need for it in this country at this time, and has been in the past several years.

MacNEIL: What doubts or concerns do you have about it?

GEE: My doubts would b e that I don`t want them to turn into problem cases like the nursing home scandals, and to have it well supervised, where they would no longer be hospices in name only as a cover-up for nursing homes. I think they should be true hospices.

MacNEIL: And do you see that danger of sort of exploiting the idea arising with the growing trend, if Mr.. Califano`s idea follows through, of government financing or Blue Cross/Blue Shield financing?

GEE: Human beings being what they are, if there`s money around there will always be someone out to get it illegally. And I think that this will happen no matter what we do. And no matter what safeguards we do, I think that you`ll eventually find exploitation.

MacNEIL: Are you at all worried as, as you say, somebody who pursues aggressive chemotherapy for seriously ill leukemia patients, that this idea could mean throwing in the towel, giving up too quickly on some patients?

GEE: No, because even now without the availability of hospices in the United States, the patients make the decisions first with their physicians. If a patient is diagnosed as having acute leukemia, he can have a choice of being treated at home by a hematologist, oncologist, who`s around, close by home; there are those who would prefer to go to institutions where the most current -- and perhaps even investigational - forms of therapy are being used. So the patients themselves now even make the decision before they come to an institution like ours.

MacNEIL: Doesn`t it put a considerable strain on a physician who`s asked for his advice on this kind of thing, because this is becoming rather a popular movement with quite an emotional appeal behind it? How do you decide which patient is suitable for hospice treatment because you re convinced there is no way of saving him and which patient should be subjected to more treatment?

GEE: As a continuation of asking what happens, once they`ve decided to come to an institution for therapy, we have what we consider as conventional therapy and we go through those. If they don`t respond, we go into investigational therapy. But before we even do that we talk with the patient and the family, and yet the full import of going into new, untested grounds are discussed with the family and patient. And if they feel that they would not like to go ahead, we will not continue therapy at their wish. So we don`t make the selection ourselves, we discuss it with the family and the patient.

MacNEIL: Is there something seriously inadequate in the traditional hospital method of treating the dying that has made so many people now look for an alternative?

GEE: I don`t think that it`s a fault of all hospitals. Dying is a very unusual, in most lifetimes, occasion; you may see it once or half a dozen times at most. And on top of the fact that it`s an infrequent thing in most people`s lifetimes, it is also an ego-shattering thing for physicians, for nurses, where they feel extremely helpless. And as Dr. Kudlow Ross mentions, it`s very difficult for the staff to even go an see a dying patient because it just brings out their own inadequacies. It`s not a matter that people don`t want to; it`s just that they really have to make themselves do it. And at our institution I think the staff there do a tremendous job, because most of them are very dedicated, very young, and they know what the patients are up against there. It depends on the institution, it depends on the people, it depends on their own background. There`s no black and white answer on all this.

MacNEIL: Thank you. Charlayne?

HUNTER-GAULT: A major question in the hospice movement is what role insurance companies and plans like Medicaid and Medicare will play in covering costs. Since hospice falls somewhere between acute hospital care, nursing care and home care, not all the hospice programs are reimbursed. The inpatient hospice facility in Washington shown earlier has been selected by Blue Cross/Blue Shield as a pilot project, but that`s the only one. Neil Hollander is vice president for health care services for the Blue Cross/Blue Shield Associations. Mr. Hollander, does your support of the Washington area hospice mean that you endorse the hospice concept?

NEIL HOLLANDER: We think it`s an important concept and an important choice that we ought to make available for our subscribers. And because of that we want to do that particularly well, and that`s why we`ve spent so much time working with the Washington hospice.

HUNTER-GAULT: But that`s apparently the only one that you do. Why is your involvement at this point so limited?

HOLLANDER: Well, that`s not quite accurate. Around the country Blue Cross plans are presently paying for hospice services in a number of institutions. In Washington, D.C. is the first place where we`ve sat down and negotiated with the hospice -- and incidentally, with the home health agency in a university -- a complete hospice program. In other parts of the country we are paying under normal home health care benefits --for example, Mr. Rezendes` hospice in Connecticut -- services for people in hospices.

HUNTER-GAULT: So that what are the limitations at this point on what your company would pay for or support?

HOLLANDER: Traditionally in this country health insurance has focused particularly on the individual who`s sick, who`s getting sick here. Hospice embodies a number of concepts that include the family, particularly; to pay for those kinds of services is very difficult.

HUNTER-GAULT: You mean like the bereavement, after the patient has died there`s family counseling and so on -- you mean that aspect of it?

HOLLANDER: And during the period that the patient is under care, oftentimes an important part of hospice is providing services to his family. Health insurance has not traditionally paid for those kinds of things, and we have an important responsibility to our subscribers who pay premiums to ensure that we spend their money in a way that`s appropriate and in a way that they like; and so we`re very careful about moving into those areas.

HUNTER-GAULT: Just briefly, what kinds of obstacles do you think would have to be ironed out before you can go all out and allow for maximum coverage of all the stages of this?

HOLLANDER: Well, one of the things we want to do and are already doing in Washington is carefully working with hospice organizations, individual organizations. It takes sometimes more time than they would like. To negotiate and agree for a program of hospice care to the maximum extent is integrated into other health services in the community, and which has, along with the payment for those services, an evaluation mechanism, a way of looking at how that`s done so we can understand how better to expand it to other parts of the country and to our subscribers.

HUNTER-GAULT: All right; thank you. Robin?

MacNEIL: Yes, I`d just like to pursue the point I was discussing with Dr. Gee with you gentlemen in Washington as well and hear his reaction. Mr. Rezendes, the business of how people are selected as suit able for hospice treatment, are they entirely self-selected?

REZENDES: Yes indeed, and beyond that every hospice program that I know that is functioning will not accept a patient unless the attending physician concurs with the referral, so that the attending physician and the patient and family must make that choice. We offer another option, as it were; and if they are understanding of what that option is all about, then the hospice program of care is available to them.

MacNEIL: I see. I may be very dense in not quite getting this point, but in effect you are saying, if you concur, as an attending physician with the patient`s desire, you`re saying Yes, we can do no more for you.

GEE: I think that what I tried to say earlier was that we offer the patient a chance, we discuss with them completely what the probabilities of a response are at a certain stage of their disease. At that point, before we start anything, they have a choice of either leaving the hospital to a hospice, to home, or to a chronic care facility other than a hospice. Now, the choice is made with the family and the patient. And the thing is that if they feel that they would rather die in an acute care hospital under investigational therapy, then we can do that, too. And this is a choice made by the family, physician and patient.

MacNEIL: As I understand it, only some nineteen percent of the deaths in this country are from cancer. Is the hospice type of treatment suitable for diseases other than cancer? Have you looked into that at all, Mr. Hollander?

HOLLANDER: Well, we have been working primarily with people who do have cancer. We haven`t precluded that. If the concept is a good one -and we believe it is -- there`s absolutely no reason why other kinds of care couldn`t be dealt with in a hospice, and certainly the ideas that are associated with hospice ought to become an important part of the way we deliver all health care services in this country.

MacNEIL: Mr. Rezendes, do you have an observation on that? Is it really, in your view, suitable mostly for or only for cancer patients?

REZENDES: No, it is not. The concept will accept patients irrespective of the disease. The majority of those patients will be cancer patients, as has been our case in New Haven and elsewhere. We currently, in New Haven, only accept cancer patients. When our facility is open next year we will accept patients irrespective of disease. However, we`ll accept only those patients where the prognosis is limited, and that usually means less than six months` time. We are not a long-term care program.

MacNEIL: Did you want to comment on that?

GEE: Yes, I think that, to add to Mr. Rezendes` comments, hospice is still an outpatient program, with inpatient buildings only for acute care where the family cannot manage the patient. And I think that it is a terminal care facility. So it doesn`t mean, necessarily, cancer; there are many other diseases that patients can die from aside from cancer, where the prognosis may be less than six months or three months.

MacNEIL.: Is this going to require -- we heard it referred to in the film - - a very considerable change in the training, for instance, of nurses in this country, Mr. Rezendes?

REZENDES: I think it`s going to require a change in the training of all care givers, whether it`s nurses, it`s physicians, the clergy, social workers, physical therapists -- all those who have a role to play in the caring of a terminally ill patient and their families. Let`s not forget that it`s the family that`s the unit of care. So it`s going to require a change of attitudes. I think the great potential of the hospice program of care is the changing of attitudes in the delivery of health care irrespective of whether the patient is terminally ill and to humanize the delivery of health care in this country. I think that`s the great potential of the hospice movement.

MacNEIL: You mentioned the difficulty for doctors particularly

GEE: Nurses, too.

MacNEIL: Nurses, too? Describe the change that`s necessary in a nurse`s attitude.

GEE: I think that it`s an emotional change, mostly. The thing is that the patients bring about a lot of self-searching within the people working with them. You learn from the patients what the true values of life are, and many of the things that we think are valuable now will not be, in that situation. And I think the staff learn more from the patient as to what is valuable in life at that point from them than, oftentimes, what the patients gain from the staff. And I think that all this will add to the emotional change and training, that the nurses and the physicians will have to learn to deal with their own feelings in facing death.

MacNEIL: Well, thank you very much. Thank you in Washington. Good night, Charlayne.

HUNTER-GAULT: Good night, Robin.

MacNEIL: That`s all for tonight. We`ll be back on Monday night. I`m Robert MacNeil. Good night.