Roundtable Discussion on End of Life Issues
November 3, 1997 All Things Considered

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LINDA WERTHEIMER: I'd like to ask you, since all of you have had some experience with this, about who does face their own death with some equanimity, and who cannot.

ERIC CASSELL: Well Linda, we're all different, and personality has a lot to do with how people deal with everything. There are people who fight their way to absolutely everything, from turnstiles to a kind of death that they want. But people who care for the dying know something strange that other people don't know; that patients often say towards the end of their life when they've been -- they know they've been dying -- that "this is the best year I have ever had."

Now, that's impossible to conceive of for most people, but the difference is made by the caring. So that almost anybody -- not everybody – almost everybody can be helped to make it a much more fruitful time, but they can't be helped if an unrealistic hope, a false hope -- like hangman's hope, maybe the rope will break -- that, you know, if that's kept up in front of them.

They have to be helped by their physicians and nurses -- by their caretakers -- to see what's happening; what the potentials are; what they can do; what their family can do. So that they're brought into a process that would otherwise seem to them to be a struggle and a terrifying struggle at that.

So when I -- the specific answer is: while there are some people who will never accept a death -- they don't accept the day after they're dead – most people can be brought to understand where they are and what has to be done.

CHRISTINE CASSEL: The other thing that, and I -- I think that the simple answer to that is spirituality. And it's a broad definition of spirituality. It doesn't necessarily mean that only people who are religious in a traditional sense can handle death well, but one of the things that I've learned is that patients and their families who have some sense of a bigger meaning in their lives, or some connectedness to some spiritual dimension, are people who welcome the opportunity to talk with their caregivers about this.

And it's one of the real privileges of being a physician in that setting is my own personal growth, and the ability to learn what other people can see as they face this very difficult time.

LINDA WERTHEIMER: Reverend Brenneis?

JEANNE BRENNEIS: I really couldn't add anything. Christine said it very well. I do find as a chaplain that those who have some connection with the spiritual side of their lives do have a better time of it. It doesn't mean they don't have a struggle; that they don't have anger. But there's an added dimension and there's an added -- I'll -- let me put it this way: if you know you're going on a journey, it helps to know that you have some sense of a destination, even if you can't fully picture or define that destination.

If you thought your journey was to nothing, it's different.

LINDA WERTHEIMER: We're talking about death and dying in this part of the program. And our guests are Christine Cassel, who is chair of the Department of Geriatrics and Adult Development at Mount Sinai Medical Center in New York; Eric Cassell who is attending physician at the New York Hospital and fellow at the Hastings Center; and Jeanne Brenneis, who is chaplain at the Hospice of Northern Virginia and director of its Center for Bioethics.

We're going to take a short break and come back to continue the conversation.

You're listening to NPR's ALL THINGS CONSIDERED.

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LINDA WERTHEIMER: This is ALL THINGS CONSIDERED. I'm Linda Wertheimer.

Back with my guests, Christine Cassel, Jeanne Brenneis, and Eric Cassell.

One of the things that we're going to be talking about in the course of a week's reports are those families that try to make some kind of a plan, the advance directive -- legal documents that allow a patient to make some choices about how they want to be cared for. Federal law now mandates that a person be told that they can execute these kinds of documents when they're admitted to a hospital, that will say things like no resuscitation, only certain kinds of intervention.

In your practices, do you see these systems working?

ERIC CASSELL: Yeah, well they're very interesting because about -- only about 15 percent of people who come into a hospital, despite the fact that they're told about those, actually sign an advance directive. And that's quite striking.

In my office, we try to get people to sign, if not an advance directive, then a proxy. That gives -- they assign somebody else who can speak for them when they lose capacity to speak for themselves. But in fact, people do not -- do not sign advance directives to the degree that they should by themselves. They are not urged to nearly as much as they should be by the hospital staff when they come into the hospital. They are not urged to do that by their physicians once they're in the hospital.

So that the idea of advance directives, which is really just another way of saying "I want something to speak to me when I can't speak for myself" -- the idea, which is so essential, is not sufficiently implemented.

LINDA WERTHEIMER: Dr. Cassel, one of the things you have written about and worked on is the state of health care provided to frail patients and to patients with dementia, and that does involve surrogates making decisions.

CHRISTINE CASSEL: All the time -- that's right.

LINDA WERTHEIMER: Do you find that families can step up to the plate? Do what they have to?

CHRISTINE CASSEL: Some families can and some have great difficulty. It's always better if there is a long-standing relationship with a provider, a physician or other provider who knows the patient, knows the family, and has talked about these things ahead of time, so that there's a degree of trust and understanding back and forth. And that's when the proxy relationship works the best.

I fear that often in this modern day and age where we practice what I call "stranger medicine;" where we often don't know the patients; the patients are critically ill in a hospital being cared for by people who don't know them very well -- that then it becomes a somewhat adversarial situation or, at the very least, the doctors are handing the decision over to the family, saying: "well, do you want us to keep your mother alive or not?"

And in that setting, I think it's unrealistic to ask a family to make that kind of decision, and to feel that somehow it was their burden that this happened. Often, these choices are not actually real choices. The mother's going to die. It's just a question of when, and having everybody understand that. But it's posed as a choice that somehow the family has to make.

LINDA WERTHEIMER: Well, how does that affect grief? Do you think people are left with the notion that they -- they had a lot of responsibility and maybe they failed? Instead of being able to think the disease, the doctor, the hospital?

JEANNE BRENNEIS: That's not what I usually see. There are -- some people may feel that, and if they do, we in hospice have failed in our job to support them properly and to listen to them, and to see when they're getting over-stressed and feeling over-responsible.

I remember conducting the funeral for a woman whose husband's funeral I'd conducted three or four months previously, and she literally just burned herself out micromanaging his care and refusing to draw on her four adult children to help her. We should have done a better job of seeing what was going on, and pulling in those children and reshaping some of that care.

But what I most often see is people saying: "I gave what I could" -- it's like a mother taking care of an infant. You complain that you're tired, but you feel you're giving your very best at an important time. And what I see are families who feel it was tough, but we made it through -- not just some kind of endurance thing, but we gave of ourselves; our hands; our hearts; our loves; the medication -- whatever. We did that for him. He was cared for by loving hands, and that's a very important thing in grief.

And it's a very different picture from someone who stood at the door, or outside in the hall of a hospital room, as other people did all the care and all the ministering.

ERIC CASSELL: On the other hand, intensive care units are places where people live, not just die. And so when families -- when somebody does die in an intensive care unit, who might otherwise have lived -- in other words, the appropriate use of intensive care -- they, too, have to be supported, in knowing that they did the right thing; that they were there when they were supposed to. So that they understand that this -- this abrupt death – this technological death -- does not injure them any more than the death itself would have.

So wherever death occurs, the family has to be supported, as well as the patient.

CHRISTINE CASSEL: Let me make an analogy to the earlier movements, some 10 or 15 years ago, of hospitals creating birthing centers. It was actually, I think , the women's movement realizing that here's this natural event that's being turned into this sterile medical disease model. And hospitals have responded to that, and created centers where a normal delivery of a child can be -- the family can be involved; it can be a more comfortable setting.

I think we need to do the same thing at the other end of life, so that as others have said, wherever the patient is, this kind of care ought to be available.

JEANNE BRENNEIS: And I think there's no accident that those birthing centers were created when the boomers were having babies.

CHRISTINE CASSEL: That's right.

JEANNE BRENNEIS: As -- you know, we're in the boomer generation. As we're getting older and dying, I think we'll have "deathing centers." I don't know what we'll call them.

LAUGHTER

LINDA WERTHEIMER: Maybe not that.

LAUGHTER

JEANNE BRENNEIS: But we -- I think it's no accident. Also, we're spending a lot more attention and care. There are so many more books out now about dying than there were 10 years ago, and I think it's -- as the boomers have faced these issues with their parents, and now will be facing them in the next few decades with themselves -- that, you know, the death business is booming.

LINDA WERTHEIMER: I want to thank the three of you for joining me today. You've given us a very good way to start this project.

CHRISTINE CASSEL: Thanks very much.

ERIC CASSELL: Thank you.

LINDA WERTHEIMER: The Reverend Jeanne Brenneis is the chaplain at the Hospice of Northern Virginia and the Director of its Center for Bioethics. Christine Cassel is the chair of the Department of Geriatrics and Adult Development at Mt. Sinai Medical Center, and the immediate past president of the American College of Physicians. Eric Cassell is an attending physician at the New York Hospital, and a fellow at the Hastings Center. He is the author of The Nature of Suffering and the Goals of Medicine and The Healer's Art.

Our series on the end of life continues all this week on ALL THINGS CONSIDERED. Later, we'll travel to western Montana to talk about the demonstration project underway in Missoula. There, Dr. Ira Byock is trying to change an entire community's attitudes about end of life care.

We also have a report on the changing place of palliative medicine in the medical community. And tomorrow, we'll meet a woman and her daughters as they learn to cope with the realization that there is going to be a death in the family.

We invite you to visit our website at npr.org. There you will find a collection of readings, a bibliography, an interactive list of resources linked to organizations with information on specific illnesses and conditions, as well as some dealing exclusively with grief and bereavement.

And you'll find transcripts of each report in this week's series. The website will be available all year long. Again, the address is www.npr.org. We invite you to visit it and browse, bookmark it, and come back and browse again later on.

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