Roundtable Discussion on End of Life Issues
Monday November 3rd All Things Considered

NPR’s Linda Wertheimer is joined by three panelists to lay the groundwork for the series. Topics include: the "medicalization" of death; changes in the training young physicians receive concerning terminal illness; Hospice and Palliative Medicine; dealing with a terminal diagnosis & the role of denial; Advance Directives (Living Wills and Durable Powers of Attorney) and Surrogate Decision Making; and the processes involved in healthy grief reactions and bereavement.

    Jeanne Brenneis, M.Div., S.T.M.
    Director:
      Center of Bioethics
    Chaplain:
      The Hospice of Northern Virginia

You can read the transcript:

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

ROBERT SIEGEL, HOST: And I'm Robert Siegel. Listen to what Americans say about death.

UNIDENTIFIED VOICE: I don’t know how to wait on nobody to die, I really don’t.

UNIDENTIFIED VOICE: You’re kind of waiting and you’re waiting and you’re waiting and it’s not happening. It becomes emotionally distressing, too, because you’re then in a state of limbo.

UNIDENTIFIED VOICE: I just have nothing but admiration for those people who are willing to take that kind of risk. And that is what a lot of this boils down to, is taking the emotional risk to face the realities of life.

UNIDENTIFIED VOICE: I’m not sure I’m in a place that I could make that sort of spiritual voyage that seems to come out of these models.

UNIDENTIFIED VOICE: To see death actually coming – and we knew it wasn’t going to be much longer, we knew that – but, I guess to have to sit there and watch that made it all seem like it wasn’t worth it just for that moment. But it was worth it. Because we had her at home.

ROBERT SIEGEL: Those are some of the people you will meet over the course of the week ahead. Today, N-P-R News begins a nearly year-long series of reports on The End of Life, Exploring Death in America, with a week devoted to terminal illness and the care of the dying.

Linda Wertheimer
LINDA WERTHEIMER: This is not easy ground to cover – the field is vast, and what complicates the reporting even more is that it’s emotional and painful. Death and Dying are difficult to talk about. And they’re difficult to hear talked about. But our hope is that you’ll spend the time with us – exploring, as we go, some of the clinical, social, spiritual and legal issues that mark the journey. Because this is something we all face.

ROBERT SIEGEL: To lay the groundwork for the reports you’ll hear this week, we’ve invited three people to join us this half-hour – because of their experience at the bedside, caring for the dying and their families.

Eric Cassell is a physician – an internist who has written widely about the theory of clinical medicine. Christine Cassel is also a physician – a gerontologist who has written about end-of-life care for the elderly. And Jeanne Brenneis is a hospice chaplain and a biomedical ethicist.

LINDA WERTHEIMER: Let me just start by asking you a kind of a basic question about how people die in this country today. A majority of deaths occur in a hospital, often in an intensive care unit of some sort. And that is a big change from the way Americans died 100 years ago, even 50 years ago. And there've been other enormous changes -- open heart surgery, even the invention of intensive care, trauma centers, chemotherapy -- many people saved who might have died.

Has this changed the way, do you think, that we regard death?

Eric Cassell
ERIC CASSELL: Well, it transforms our understanding of it, as though in fact death is a -- it's a part of an illness and if you solve the problem of the illness, you solve the problem of death. And when you say a lot of people don't die who died before, well I promise you, everybody dies. Those people who didn't die that died before will die today like everybody dies.

And that sort of leaves us -- the event of this death may be put off, but the actual fact of death, even from that illness, is not put off.

CHRISTINE CASSEL: Linda, let me address that because I see this from the...

LINDA WERTHEIMER: Dr. Christine Cassel.

Christine Cassel
CHRISTINE CASSEL: ... the perspective of training medical students and residents in medicine, and addressing deaths that occur largely in the hospital, as you say. The hospice movement has done a wonderful job of getting a lot of patients out of the hospital into their home, or a more comfortable setting, but the fact of the matter is that there still are lots of reasons why people will die in hospitals, and doctors and nurses in hospitals can help them suffer less as they die.

One of the reasons we are not able to do this, though, is because we see death as a failure. If physicians see a patient who dies as a failure, they're not going to take great reward, professionally or personally, in feeling like they did a good job in comforting that person and providing care for them at the very end.

LINDA WERTHEIMER: You mentioned the option of hospice, which has been available to dying patients, first in Britain and then here in the United States, for about 20 years. I'd like to ask you about hospice care and palliative medicine, but first let me ask Jeanne Brenneis to give us some definitions. Hospice?

Jeanne Brenneis
JEANNE BRENNEIS: Hospice itself is a philosophy, not a place. It's a way of caring for those with a life-limiting progressive illness, or those who are dying, but not necessarily imminently dying; those who have -- those who, unlike the rest of us, know -- probably know of what they're going to die, if not exactly when.

It's a multi-disciplinary effort to provide the medical, emotional, and spiritual care needed for the patient and for the family. I think an important piece in this is that we attempt to treat the family -- the whole family unit -- as our patient, not only the individual.

And hospice involves a choice to forego curative therapy in order to have comfort care, and have the best quality of living for the time you have left.

ERIC CASSELL: You should understand that hospice is a philosophy and a movement, but it may actually be the cutting edge of medical progress at the present time. And that's always a strange thing because we always think that science is the cutting edge, but in fact the idea that you can successfully care for people -- including themselves and their family, their spiritual needs as well as their physical needs -- is shown every day in hospice, and it makes the hospital a rather barren place.

The idea that it is not curative is a hangover from the past. In fact, it's a -- becomes a blend. It's not curative, but it addresses specific physical problems that patients have since they're going to die, and their diseases are not curable. It's called "not curable medicine." But in fact, it addresses that sickness at every level of the human condition – the physical, the emotional, the social, and so forth.

And that's what makes it, both so wonderful, and also a breeding ground for understanding where medicine should go in general.

CHRISTINE CASSEL: Which may, in fact, be palliative medicine. Palliative medicine is just picking up steam in this country. It's actually a separate specialty in a number of other countries around the world. The focus of it is not identifying disease or curing the disease, but achieving comfort and relief of symptoms, regardless of what the cause of those symptoms are.

So if a person has pain or shortness of breath or nausea or sleeplessness or anxiety or depression, you identify that and you treat it through whatever means are most effective.

What's interesting to me is that it's taken this long in the United States for us to start paying attention to what patients are suffering from – that is to say, the symptoms -- rather than simply the disease, as the focus of our efforts. And in that sense, I think it may -- it is going to have far more impact than even just the care of the dying, although we certainly hope that that is the first thing to improve.

LINDA WERTHEIMER: Well let's back up then and go back to Reverend Brenneis, and let me ask you about this -- the idea that you approach the whole family and you attempt to treat the whole family.

What you have in most cases is the primary patient -- the person in the bed. But then you also have the rest of the family, who have had to come to some kind of terms with the fact that they are not going to keep doing things to try to save the life of this person.

JEANNE BRENNEIS: And that's a hard place for families to come to. Some families come into hospice care still kicking and screaming and wanting curative therapy -- if there were just one more thing that could be done. Other families have really gone down that route and have recognized that even if they could wish there was something more that would turn the progression of this illness around, that's not going to happen.

But we have to recognize that families and patients and different family members are certainly not necessarily in the same place. You're dealing with a multitude of people. And when I say "family," I don't necessarily mean only blood relatives of those living in the household. We use "family" fairly loosely to incorporate all those who have meaning for the patient; all those who are close.

So it's trying to give them all the support, the education about caring for the patient physically; the support they need to make this a good and a growth-producing time for the patient and the family. It might seem like a strange concept, but there are certain things that one can go through and grow through at this time.

And I think one of the difficulties in the way we face death in America -- I laughed at Eric's comment that "everybody dies," I've spent 12 years trying to teach people that everybody dies -- and it astonishes me that 83-year-olds still come into our care and are surprised that they're going to die.

But if you're fighting for the next chemo and the next cure right up until your last breath, there's no time to reflect on what your life has meant; on whether you've achieved the things you want; on saying "I love you;" on saying good-bye; on all those things that can really enrich this period of life.

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Dateline: Linda Wertheimer, Washington, DC; Robert Siegel, Washington, DC
Guest: Eric Cassell; Christine Cassel; Jeanne Brenneis

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