Hospice Care

THE OPEN MIND
Host: Richard D. Heffner
Guest: Louise Bracknell
Title: Hospice Care
AIR: 2/29/84
VTR: 1/26/84

I’m Richard Heffner, your host on THE OPEN MIND. Perhaps the single most significant recent development in health care has to do with hospice, a much more humane way of dealing with our last days; with their quality, not with their number. Sometime back, Jane Brody, in The New York Times, wrote, “Hospice care gives patients greater independence and control over the last weeks of their lives. And it restores to death the dignity it often had before the development of a seemingly limitless array of life-sustaining equipment and the death-denying notion of modern medicine that all hope for survival is not gone until every conceivable medical possibility has been tried.” Now, this is an extraordinarily important subject for us all to look at with an open mind, and my guest today is Louise Bracknell, the Executive Director of the National Hospice Organization.

Thanks for joining me today. I know, Ms. Bracknell, that some people consider this a grim subject. I now you don’t.

BRACKNELL: No.

HEFFNER: And I don’t. I wanted to ask you though, whether what we have here is an extension of the notion that today we want to have more control over our own lives and, in extension, over our own deaths.

BRACKNELL: I think so. I frankly think that the incredibly quick development of the hospice movement in the United States over the last ten years comes in great measure from the fact that life otherwise has gotten so complicated. All our homes now have personal computers, and the accounting and the bookkeeping and the scheduling of daily life is so complicated. You see, we see, in life now much more attention coming closer to the hearth, as I’ve said before. Many women and fathers, mothers and fathers want to have their children at home. More people are wanting to get out of the hospital and back at home as quickly as possible. They feel that that’s more nourishing to their lives and to their health. And dying people, indeed, as well, are wanting to be closer to their families, to those things they find familiar, to their roots, so to speak, where they’re comfortable to live out their last days.

HEFFNER: You say dying people in particular. What about their sons, their daughters, their fathers, and their mothers? Because as you pointed out to me, we’re talking not just about terminal car for the very old, but sometimes for the very young and in-between, too.

BRACKNELL: And in addition to which hospice care treats a person and his or her family as a unit of care.

HEFFNER: What do you mean?

BRACKNELL: By that we mean that, you know, so much of modern medicine is very medicine, physical help oriented. They look at you and we’ve got so many subspecialties of course and wonderful American technology in medicine. And I don’t by any means cast aspersion on that. It’s a wonderful development. But part of the consequence of that, I think, is that many times if something is wrong with your body, you’re looking at, you’re talking to someone who is concerned about one small piece of your body. And we know that human beings are not just physical, medical beings or medical subjects. We are, all of us, physical, psychosocial, spiritual, emotional beings. And so much of medicine looks just at that medical portion, just the physical portion of care, to the exclusion of those other elements that make us all human beings. Hospice care seeks in the most difficult times of a patient’s life, of a person’s life, and of their family, to turn the health system around to that patient, to say, “We know that you have many different kinds of needs. One of those very clearly is care for your body to try to alleviate what pain you many have, whatever symptoms you might have, but in addition to which you’re dealing with financial matters, to get your affairs in order, dealing with the emotional consequence of the grief that will come to your family and the bereavement, dealing with the psychological impact it will have on your family, their ability to cope without that person in their place in the family.” So that it is a very complex, yet very natural and normal place. Hospice care, rather than, I think, in essence, pulling or stripping a person away from everything else they are in these last days, puts that person back in their familiar context so that all of these things are able to have their place. The idea of hospice is to affirm life, recognizing it all the while that dying is a natural part of life, and that will face us all. And that it need not be as intolerable as it often is.

HEFFNER: Well, when you say that though, aren’t you referring to an older tradition? Aren’t you really talking about what dying did mean in the past when we were at home, before the institution of the modern hospital?

BRACKNELL: Indeed, I think we are. And that’s why I say we’re sort of coming closer to the hearth. That does not by any means, again, negate or ignore the incredibly happy advances which have come through medical technology. What it does acknowledge is that ultimately, in many people’s lives, there will come a time where technology is no longer the appropriate response. Where modern technology and acute high-tech procedures can’t further sustain life or extend life or substantially improve its quality. And even in traditional medicine, in fact, in traditional medical care where most of that is in institutions, as you know, in hospitals and other institutional agencies, even there, there comes a time when curative measures can’t be seen as appropriate. And even in that setting the care reverts generally to primary care, alleviation of pain and other symptoms, and control, and making the person comfortable. Where the difference is, I think with that phase of the life process and the dying process, where it’s different from traditional medicine, I think, is that so often in an institutional setting, even when the care is basic primary care and the families are around and a part of that time, it’s often around those necessities of institutional life. For example, I’m sure you’ve had this experience – I did as a child. I particularly remember seeing my…with my grandfather who was in the hospital. And there generally are often tubes in the arm and the family and grandchildren who want to come and see their grandparents, for example, are tripping around the tubes, trying so hard not to disrupt or dislodge a needle, trying so hard not to offend the nurses and to get in their way, because you’re so concerned that you might do something wrong. And visiting hours are very strict. And the meals and the food service, of necessity, is strict. When you have an institution with large numbers of people to care for, those are necessities of institutional life. What hospicing feels is that those things, many of those restrictions aren’t as necessary. And if a person can be cared for in their own home, you can adapt the medical necessities of that caring to the situation which actually prevails in that family.

HEFFNER: Yes, but then that raises the question of: Who says? Who says that a patient is at that point at which heroic measures are no longer appropriate? Who says that it is time to move from the hospital with its great scientific capacity perhaps to prolong life and maybe even a good life, and it’s time for dying instead of a time for living? Who says so?

BRACKNELL: Clearly it’s a personal decision. Very personal. And very serious, and very difficult for the patient and his or her family. Ideally I think that decision is made in consultation and in great thought between a physician and his or her patient and the patient’s family. With taking into account all of those things which have to be considered. And I think these are resources that the possibilities of extending life and what consequences there may be to pursuing those possibilities. It’s a very serious decision. Ordinarily it is made between the physician and the patient and the patient’s family. At that time then a decision would be made, if it’s appropriate, that those curative, aggressive therapies likely would not substantially lengthen life or improve its quality, and in fact may detract somewhat from the quality just because of the institutional nature or because of some of the, as I say, the requirements of institutional –based care.

HEFFNER: Do you think there’s something of a tension between the continuation of the best possible scientific help and the development of the best possible humane, human help?

BRACKNELL: I think not. I think, having been around health policy circles for awhile and public policy issues, as we discussed earlier, that in fact the humanistic side of medicine is a natural growth of modern medicine. We’re seeing a return parallel with the development of complex and expensive and very exciting medical technologies. We’re also seeing a return and growth of family practitioners and physicians who want to go to rural areas or underserved areas who want to get into family practice even though there still is, I think, a little bit of a struggle for those physicians even, whether they go to high-technology medicine that is very, very aggressive and exciting and expensive an where a lot of the advances are made that will overcome disease hopefully someday and cure many more diseases; or whether they wish to look more at the kind of family practice medicine where those decisions are made. So I think there’s a natural trend coming to inject humanistic medicine and holistic view of patients into the medical practice. So I don’t think they have to be contradictory.

HEFFNER: Do you think that perhaps that’s a little bit of a matter of spitting against the wind? You talked about numbers before. What some people have considered the inhumanity of the huge institution is a function certainly not of mean-spirited medical people…

BRACKNELL: No.

HEFFNER: …but of numbers. But our numbers are not diminishing. This is a country whose population continues to burgeon. Is this a realistic approach to the problem you’re dealing with? Or is it a kind of wishful thought that we might return to a time when numbers were such that we could pay this much personal attention to those of us who are terminally ill?

BRACKNELL: I don’t think it’s wishful thinking. I assume by that question that you mean do we have the resources, do we have the personnel and the time to care individually for the large numbers of people in the country who die each year who might be appropriate for hospice care.

HEFFNER: Yeah.

BRACKNELL: And I think we do. For this reason: At the center of the hospice concept is the idea that professional care-givers supplement the work done by families and the primary care-giver of the patient in the home, and volunteers in the community. Very central to the concept is that families are taught to do things for the patient that they wouldn’t have thought they could do: changing dressings, making sure the personal care is attended to, administering medications, and so on. In addition, a very strong component of the hospice concept is the use of community-based volunteers who are not paid, but who offer their services to help, running chores, being a kind listening, ear, checking in on the telephone, helping families to cope even after the patient has died. As you know, bereavement care as a follow-up program is a very important part of hospice care. So that you are, in fact, through hospice, bringing to bear all of the resources in the community. The health care side of it itself is done in an interdisciplinary way by a team of people made up of a physician, nurse, social workers, and counselors, supplemented by volunteers and family and friends who are care-givers as well, so that each of those medical disciplines brings what they do, what they can to the patient’s care. Each does what they do best, and they share in the care so that the resources are really used much more efficiently, I think, than…

HEFFNER: This stop along the road, this hospice, this refuge for the weary traveler at the end of his travels, is it essentially a matter of home, or do you put emphasis too upon – I won’t use the hard, cold word “institutionalization” – but I do, I am aware that there are physical places…

BRICKNELL: Absolutely.

HEFFNER: …considered hospices.

BRICKNELL: Absolutely. And in the United Kingdom in particular, where hospice grew to be so popular, and from where we took so many of the concepts of hospice, it has been primarily in an institution that is in bricks and mortar in a building. And in this country also there are many hospices, very fine hospices, which are primarily based in hospitals or other institutions, that is, in other buildings. In general in the United States hospice care has emphasized home care. And the recently enacted legislation to provide Medicare coverage emphasizes that. But we acknowledge first that not every patient is appropriate to the home care setting. It may not be a safe environment. It might be in a very unsafe neighborhood. There might not be care-givers in the home who can help to supplement the care. The person may not wish to remain in their own home for whatever reason. So that institutional-based hospice care is in fact done. Also for when symptoms get very difficult to handle, for example, or there’s considerable pain or other symptoms which might need some short-term institutional care that’s a little more intense to control, bring those symptoms under control so the patient can return home. Again though, those hospice services that are provided in a building, I find and most people find are very different than those which are provided in traditional care. Very often you’ll see, and it’s very central to the hospice concept, that the environment be homelike. Very often you’ll see flowered or patterned wallpaper, plants. Very often the staff wears street clothes rather than strict nursing clothes. Their visiting hours are very less, much less strict that in other institutions. Families, children, grandchildren are invited to come. You see balloons and birthday cakes and parties. There’s often accommodation for a spouse or family member to say overnight and be near the patient. There’s always, there hopefully almost always, and we like to promote the idea that there be an area for food preparation so that the wife, for example, or husband can prepare a favorite dish of the patient that they otherwise couldn’t get, that kind of personal attention, again because of the constraints, natural constraints of institutional life. So even the hospice inpatient unit is very different from the traditional setting.

HEFFNER: Would you say though that, everything else being equal, that the hospice really opts for at-home care?

BRICKNELL: I think most people think it’s preferable. Interesting, I think, and I think this is very central to this whole discussion, is that hospice, the hospice program and the people who are the professional care-givers of a hospice opt for what the patient and family wants. They opt for whatever it is that they can do to accommodate the wishes of the patient and the family, what will make them most comfortable. In some cases that means they would prefer not to try to do that at home, that it’s too much stress, that all the family members work and they feel they can’t provide the kind of continuity of care, for whatever reason. But I think that we have come to think that home care is something, because family members work and life is so complex, that it can’t be accomplished. What I think hospice and other home-care agencies have proved is that with the right kind of coordination of resources we can do more things in the home than we would have thought possible. It’s that promotion of that concept, the promotion of bringing to bear every possible resource in the community to help to fulfill that patient’s wishes and provide them good, quality medical care.

HEFFNER: What of the hospitals and the professionals who operate in hospitals and operate hospitals. How do they react to this program?

BRICKNELL: In general very positively. And many of the hospices in this country have in fact been begun by hospitals. Some very fine hospice programs. Clearly hospitals these days are up against a lot of barriers to lots of creative programs by virtue of those constraints of a medical reimbursement system that is very restrictive. They are very much caught in their efforts to promote different kinds of services by the realities of the reimbursement structure. That’s one of the things. We’re very sympathetic to that. Hospitals, as you know, there’s a move to close down beds if they’re not used; they’re under many, many different layers of regulatory constraint by federal, state and local regulatory bodies. And they have great difficulty sometimes getting out from under some of the red tape. But in general the reaction has been quite positive.

HEFFNER: But aren’t you aiming and haven’t you achieved third-party payments now?

BRACKNELL: We have indeed. For at least a portion of the population who might need hospice under Medicare.

HEFFNER: But when that happens – and now it’s happened – can’t you anticipate, mustn’t you anticipate that the same kind of regulatory mish-mosh will be layered on top of the hospice?

BRACKNELL: It is not impossible, certainly. And it is a danger when you provide standardization and when you’re trying, as the Congress did, to make it possible for dying elderly and disabled people to have access to hospice care. That’s always a risk that is run. I was in Congress at the time the law was drafted and had a little hand in drafting the legislation which was finally enacted. And I have to say that it was done with the most, the greatest attention to being faithful to the hospice concept. And elements which you don’t see in law ordinarily are in this law. Require the use of volunteers, it does. It requires all of those elements which in fact make hospice, hospice in most parts of the country, and it’s very faithful to it. I think that it’s a matter of maintaining constant vigilance and staying very much in touch with the members of Congress and with the people in the regulatory agencies who are themselves human and who themselves face these kinds of situations to keep that from becoming bogged down in bureaucratic necessity.

HEFFNER: Well, I know all of my medical friends will shudder when I remind myself that I hate the notion, I must admit, of hospitals. I think so often they’re bad for your health. Isn’t this, however, a first step, a necessary first step toward diminishing the role of hospitals and hospital care, not just for the terminally ill, but for all the rest of us who might benefit from the same, more human, more humane, more personal care at home?

BRACKNELL: I think not, for two reasons. One is that hospitals are again buildings where many individual human beings go to work. They, like people who are often misunderstood who work in government, are there because they want to serve people, just like other health providers are who work in home-care agencies, who work in hospices and so on. The nature of the institution has to be given its due. And certainly that’s the case. But I believe that hospitals, like others, want to do the best by their patients. And I’ve found that the existence of hospice and the concept of hospice has in fact already started to have greatly positive impact on the kind of care that is rendered in hospitals for non-terminally–ill patients. Second, I believe very strongly that we have a large population. We have very serious health needs which must be addressed. I don’t think we can afford for one minute to diminish our attention to biomedical research which will help to, hopefully, cure diseases or prevent certain, many kinds of diseases. Clearly that will not do away with the fact that people do die. And our feeling is that hospice is for a very specific population who have a life-limiting prognosis and for whom curative measures, for whatever reason, are no longer appropriate in that person’s view, and where they would choose to be cared for in a different kind of setting with a different kind of emphasis. That does not diminish the need or the appropriateness of acute care and high-technology medicine. What I do think though is that it will have a positive impact on the way medicine is practiced altogether.

HEFFNER: But you know, before you talked about the positive impact of the hospice upon the family of the terminally ill person. Would it not be fair to say that one of the reasons the institution of the impersonal hospital has grown up is because it is such a burden to have with you the dying person?

BRACKNELL: It is. But do you know, and I’m, the post-war baby boom, those, you know, I think a lot of these developments in high technology…

HEFFNER: I am too. World War I though.

BRACKNELL: (Laughter) Right. You and I both then have witnessed the development of most of these technologies we talk about. And I came up with television. As far as I’m concerned, if we didn’t have television we wouldn’t have lots of those elements of connectiveness to the rest of the universe that I take as a given. I don’t think that we are talking about necessarily something that is outside the realm of the natural order of things. I think that we, many of us, have come to get reconnected to those parts of life that somehow we overlook. I don’t know any of us who don’t go through a week never stopping long enough to say hello to families or parents or children, neither stopping to sort of pat somebody on the back who might work with us or to smell the roses, so to speak. We all of us, I think, on occasion will collect ourselves and say, “Heavens, I’m not being a human being!” I think it’s very natural that we as a nation want to progress in every respect we can progress. I think it’s also very natural and very healthy that we will realize that there will be some elements where human ability to change things is really rather limited. And that that factor in the universe that makes life unpredictable is also what makes it beautiful. And that just as living is a wonderful part of living and being born is a wonderful part of living, dying is also a natural part of it which we will all face. And the better we learn to face it and the more we help each other to learn that it might not have to be so awful, that it can be productive in fact, and a very high-quality period of time and very moving and loving and forward-looking in that sense, I think the better off we’ll be as a country.

HEFFNER: What are the statistics? How do you account – not account for – how do you count the growth of hospice in this country in the past decade, let’s say?

BRACKNELL: Well, the first hospice began in about 1974. And the Joint Commission of the Accreditation of Hospitals did a survey last year and they found about 1,145 programs which identified themselves as hospices in one stage or another of development. We think about 500 are actually operating hospices which are providing services now. That’s very fast growth, enormously fast growth. And there have been some, I think, who have been a little concerned that it was too fast growth. Nobody wants to see a sort of popping up – I hate to use the, I don’t mean to cast dispersions on anything – but sort of Kentucky Fried Hospice it’s being called. Nobody wants to see that. What we do want to see is whether, A, that every community in the country where it’s appropriate and where it’s needed has access to hospice services, for one thing; but that, second, that there’s not the kind of proliferation that could destroy the concept. There’s a lot of interest now, and I think very appropriately so, placed on the standards of what hospice programs should be. There’s a lot of variety in the kinds of services that are offered by hospice programs. And to a great extent that’s natural and good. On the other hand, I think we need to be able to know that if someone is looking at a hospice program with care that the standard will be high, that the concepts of hospice, seeing the patient and family as a unit; 24-hour-a-day, seven-day-a week care; the use of volunteers to provide care; the use of an interdisciplinary team; and the bereavement follow-up for families after the patient dies, those are very serious, strongly held tenets of the hospice movement, that they be preserved.

HEFFNER: How do we assure ourselves of this preservation?

BRACKNELL: I think in part actually the passage of the Medicare law will help. Because it says if you’re going to get federal reimbursement we need to have some kinds of standards. There’s still great flexibility for community appropriateness and those specialties of different communities organizing their hospices in different ways. As with Medicare reimbursement, third-party insurance we hope will start to come around, so insurance companies will start to pay for that. It’s up to the hospice movement, to the first generation of hospice promoters in this country. And they come from every walk of life. They’re ministers, they’re social workers, they’re nurses, doctors, lay community people, they’re patients and family care-givers, they’re philosophers, they’re ethicists. Those people and that the literature continue, that they be allowed to continue to be, say, whose who the people look to the hospice movement to say what hospice is. There’s a great temptation, of course, when it becomes very popular, to take it on without going through the paces of figuring out exactly how it’s best provided and looking at how other programs have done it successfully. I think it’s very important that those who would choose hospice, the potential users of hospice care, look very carefully at the kinds of programs that they use. Do they use volunteers? Is the care available all the time? Do they use a team approach? Do they respond when I call? Those kinds of things, to make sure that the standards are high. And of course that’s what the National Hospice Organization is about, to try to maintain a level of standard, to promote the uniqueness of care, and to be, to try to promote the concept and to be the educator as best we can of the communities of what hospice care can be at its best.

HEFFNER: If you come back here – and it’s the last question because we’ve reached the end of our time – you come back here in five years, do you expect to have found a full-blown hospice movement, thousands of hospices all over the country, tens of thousands perhaps?

BRACKNELL: I don’t really think so, because in any given community you have to be able to, of course, to support a program, to know how many people might use that service. And of course hospice care is not appropriate for everybody. So it’s not everyone who dies who might use a hospice program; but those who will choose it, and it’s not always a very large percentage. So I think that with some planning and some conscientiousness and standard-setting that that won’t happen. That’s our hope.

HEFFNER: We’ll get you back here in five years and ask you then.

BRACKNELL: Thank you, Mr. Heffner.

HEFFNER: Thank you very much for joining me today.

BRACKNELL: Thank you.

HEFFNER: And thanks too, to you in the audience. I hope that you’ll join us here again on THE OPEN MIND. Meanwhile, as an old friend used to say, “Good night, and good luck.”