Spring 2000 Newsletter: Medical Ethics: A Transcribed Conversation, Part III

First broadcast on WBEZ Radio, FM 91.5, and printed with permission.

Part I was published in our April, 1999, newsletter. Part II was published in our October, 1999, newsletter. For a copy, please call our office, and we will mail it to you.

Identification of participants:
VL: Victoria Lautman, WBEZ
MS: Dr. Mark Siegler, Professor in the department of Medicine at the University of Chicago, where he is also the founding director of the MacLean Center for Clinical Medical Ethics
AG: Ann Dudley Goldblatt, assistant director for the MacLean Center for Clinical Medical Ethics, who also teaches in the law school, the medical school and the college at the University of Chicago

VL: As if the terrain isn't complicated enough with all of these medical devices and treatments and life-prolonging types of technologies, you also have a whole slew of cultural and religious issues to deal with. How is that factored in? Does that play an important role in the discussions you have in these meetings?
AG: Yes because for example in different cultural groups sometimes you have a mother in law or a grandmother who is the decision maker and we sometimes get confused because we don't know why no one is willing to make decisions on behalf of the patient if the patient's incompetent - and then we learn that these are particular cultural distinctions. Sometimes we get wonderfully strange people that we weren't ready for who want a shaman to come in and provide prayers and that, of course, is fascinating and simplifies the problems, but we do get some international and cross-cultural problems for which we simply aren't prepared until we're told about them.
MS: It's one of the fundamentals of the field of medical ethics that patient values are very important, and these values can be changed dramatically by different cultural backgrounds, different religious backgrounds, and at least to the extent that we encourage the doctors and the nurses to learn of their patient's background and values.
AG: I think actually we're becoming - I think perhaps people were a little scared - the physicians and the other healthcare workers were a little bit wary of medical ethicists for awhile, but I think they have come to see us as helpers as opposed to
MS: critics
AG: critics, yes, and actually most of the consults do come from the medical team - who seek answers to problems that individual patients or other people have brought to them; so I think we're seen as a help. MS: And I'm not sure that, despite our efforts to publicize the availibility of the service, that patients and families are entirely aware that ethicists are available at mony hospitals around the country. Studies have shown that most hospitals of over 200 beds have some sort of ethics program, and the bigger hospitals have, as you say, even more formal programs. So patients are informed of that as part of the entrance to the hospital, but I suspect that many of them are not entirely aware of it and, if they are, they and their relatives might call upon the services of ethicists not just at our hospital but elsewhere.
VL: How open to litigation are you? Do you find that now that you're in there
MS: I'm against it.
VL: I know there are cases of ethicists, even medical teams, that have been sued by the family. Is that something you see that just goes with the territory?
AG: I myself am aware of very few, and I think it would be difficult to see, since we are consultants, that we have ever forced anyone to change their mind or done anything that was damaging to a family or a patient. I don't worry about it, do you, as an ethicist?
MS: As a physician I'm always aware of the litigation climate in our practice climate. But it turns out, as Mrs. Goldblatt says, that ethics consultation has not been one of the main sources of complaints against medicine. Because I think that many people realize that the ethics consultant is there to try to assist the patient and the family and the doctors to reach decisions that they want to reach and that are ultimately in the patient's best interest. There have been, as Mrs. Goldblatt says, a handful of cases against ethics committees that I've heard about around the country, but they tend to be really the exception to the general rule.
VL: We have a lot of people calling in; let's take a couple of phone calls right now. Jean, hello.
Jean: My name is Jean and I'm a family member of someone who died in the past year of chronic illness. I would like to say, after listening to your discussion, that with all due respect to the medical ethicists and the work that they do, in my experience and our family's experience, that any work that any medical ethicist may do, whichever decision they make, I feel that it will always be used in the current system of HMOs to deny care to patients. That has been our experience in our family, the struggle to get the care that the patient wanted.
AG: It certainly is true that perhaps the major ethical problem in the doctor-patient relationship right now seems to be denying care that either the patient or the family or, in some cases, in many cases, the doctor feel would be appropriate. As I say, we haven't had that kind of case come to us very often yet, and I think the problem is that it's very hard for your family members to figure out how you can actually advocate most strongly to get what you think is appropriate. And I'm hoping that the HMOs will become more accepting of these problems in the future, but I feel like President Clinton, I feel your pain, I know exactly what you're saying and I think that we should be more involved in these treatment denial considerations.
MS: Jean, it's interesting that you raise this question, because throughout the past twenty or thirty year history of medical ethics, the major problem has been quite the opposite, and that is the claim by patients and families that no one was listening to them when they said enough is enough and they wanted to stop treatment. It was Mrs. Goldblatt back in 1980 who, in a way, wrote the first essay which said that if you really take patients and families rights seriously to refuse treatment when they think enough is enough, you have to be prepared to take them seriously when they request treatment when the doctors say enough is enough. And when we talk about 1980, we're talking about a time long before the managed care movement in this country. But I think what you've said, and what Mrs. Goldblatt has agreed with, is clearly the case, that in the last four or five years we've seen Mrs. Goldblatt's prediction coming true in the managed care setting, and that is the refusal of treatment that patients want or that families request has emerged as a major concern, and it's sad to hear that you and your family experienced that kind of a problem.
VL: What is an example of the kind of situation where that would actually take place, where there's a terminal patient who might be able to have a couple more costly treatments, and the ethicist is called in and says, well, basically this person is going to die, so why are we prolonging this situation? Have I made a right synopsis there? It's crude but
MS: No, it's a reasonable synopsis: all medical care plays on the notion of probability and the question that patients and families and doctors are often asking is "what is the likelihood, what is the probability of benefiting the patient by doing certain treatments," and let's say some of them are costly, expensive, treatments at the end of life. In the old days, if the probability were greater than zero, it's likely that the treatment would be offered to the patient, and the patient would have a right to make a decision to accept or not to accept the treatment. I think, in the more recent days where payers increasingly are controlling some of those decisions, a probability perhaps of one in a thousand, or one in a five hundred, may not be something that payers are eager to support - particularly if it's a costly intervention and so, you get into this debate as to whose decision should it be? The patient? Or the family's? Or the doctor's? On the other hand, should it be the third party payer, whether it's a private payer like an HMO, or a public payer like government for Medicare or Medicaid?
VL: Do you ever - I wanted to know - are you ever uncomfortable with a decision that you make, even though, on the one hand, you know you've made the right decision? Are there cases also where you really think, gosh I wish I had that to do over again? Go on, you can answer that.
AG: I think very seldom, because we don't decide alone, and so we hear all the points of view, and I think all of us are tempered by the other points of view, and so we don't make as extreme a decision, and once again it is mediated by the family or the doctor once we've finished. So I would say I'm seldom uncomfortable; I'm frequently distressed by the tragedy that almost every one of these cases involves, the personal tragedy and sadness. So it's always distressing, but I don't frequently feel we've been unjust.
MS: No, I don't feel we've been unjust, but I tend to often be distressed about whatever decision we've reached, because by the time we're called in to reach a decision, both sides have substantial merit. It's not as if ethics is to decide between good and bad, right and wrong, it tends to be a struggle to decide between right and right, which makes it very difficult. And the other thing is that outcomes often are important, that is, these cases don't end with the ethics consultation opinion; the case continues on to some sort of resolution and sometimes the resolution makes you re-think the ethics suggestion you had made weeks or months before.
AG: Right. I tell you what does distress me is the phone call, and one of the things I've thought about is, as we've learned about denying care, do we begin to trust the doctors less? And that means we begin to be more aggressive in what we ask for, and that exacerbates problems and maybe even creates problems? And that's sad.
VL: Jean, thank you for your question. Let's move on to another one. Jan, thanks for joining us on Odyssey.
Jan: Yes, this is the situation: A liver becomes available and a family would like to specify a recipient. Now, assuming the blood type is OK and the tissue typing, and it's a family member, well fair enough; but what if they would like to specify the recipient as being a celebrity - such as, and I don't mean to use Walter, but that would be a situation. What if the family members would like to specify that the liver goes to Walter Payton?
VL: They will their liver to somebody specific?
Jan: Well, if there's a family member who dies in an accident, and a liver becomes available, and the remaining family members would like to specify the donor, it could be somebody in their family, but what if it were Walter, or somebody like that? Can a person do that? Can a family do that? And, of course, what are the repercussions of that?
VL: Thank you Jan.
MS: Obviously, this idea of directed donations is something that we permit, if not encourage, with regard to blood transfusions. Secondly, the use of living donors, say for kidney transplantation, is a common practice in this country. Probably kidney donors - living donors - account for 30-35% of the kidney transplants that are done in the United States. Now the question you're raising is whether a family can direct a donation of a cadaveric liver from a loved one in their family who has died, and although I was not aware of it until last week, apparently that is permissible. I did not know that until I chatted with a few transplant surgeons last week, and so, there are provisions, as you say, whereby an organ could be directed to a specific individual. Generally, that might be someone in the family who needs a kidney transplant, for example, but I think there's nothing in the rules that would preclude the directed donation to an unrelated stranger, let's say a celebrity, like Mr. Payton.
AG: I'm not as positive about that. There have been cases where a young girl was killed in an accident, and her classmate needed a heart, and they permitted the directed donation. But, in general, the problem is, if you permit directed donations, do you also permit generic (no Asian Americans, no males, you know, this must go to a white caucasian female who's a member of Kappa Kappa Gamma) you know, you could get very specific. Obviously, that's very inappropriate. And so, I think, in general, a directed donation to a stranger, especially a non-celebrity, but I would say a celebrity, too, I think is suspect. It's unjust to the people who need the organs more, and who've been waiting longer.

Editor's note: This conversation will conclude in the next issue of Connections, Fall 2000.