Fall 1999 Newsletter: Medical Ethics: A Transcribed Conversation, Part II

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

Part I was published in our April, 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: Who calls you? When and why does that occur?
MS: Generally we get called in when conflicts emerge, when there are disagreements and when somehow the ordinary course of medical events is not going along smoothly. Example: perhaps a patient or a patient's family disagree with the doctors over how aggressive the doctor should be in providing someone who may be close to the end of life. That would be a typical type of problem. That can happen in the medical intensive care unit, or sometimes in the neonatal intensive care unit. So it could happen in either extreme of life. Sometimes the issue may come up not in a life and death matter but a patient refusing a treatment that the doctors think is absolutely appropriate and necessary to help the patient, and the patient making a refusal. The question may come up as to the patient having sufficient mental ability to make such a refusal. We might get involved in a case like that. In the news this week we saw the Walter Payton case on organ transplantation; Mr. Payton has to go on a waiting list for a liver. Those kinds of questions about obtaining and distributing organs for transplantation might come up. We also saw a case of hand transplantation done in Louisville and that is a case of experimental or innovative surgery, an operation that had only been done once before this past fall in France. That type of case that raises brand new types of medical treatment, new technology, would also perhaps come to our attention.
VL: How much of those questions are actually on moral ground, versus on purely medical ground? Obviously that's what you're trying to decide. Are they always only medical decisions? Are they always only moral decisions?
AG: No. They're usually both, and that's one of the reasons it's important to have a group of people: the doctors tend to concentrate on the medical aspects of a problem in the beginning, I tend to emphasize the individual autonomy rights part, the chaplain & sociologist tend to talk and think about the family. We get together. Many of the problems are only superficially medical. They may be medically-mediated procedures but the underlying problem is generally one of consent or agreement or refusal, and, like everything else, every decision you make has an ethical component so....
VL: I just keep thinking of all these possibilities. You all get together once a week in this think- tank like group. I suppose it's disturbing and poignant. Do you get into situations where you know there's going to be a liver available to the hospital and there are 2 liver patients and arguing who is going to get it and why. Is that a scenario?
MS: No. That would not be one.
AG: We did have one wonderful case. The kidney transplant people came to us and said we have a terrible problem. We want the head of the list even though she doesn't really need a kidney right away, but her job is such that she should get one soon. And we asked them why there was this problem and it turned out that she needs a kidney because she'd given her other kidney to her sister 10 years before and this same group of surgeons had done it. So they felt very close to this patient, and they wanted to put her at the top of the list, and they asked us whether we thought that was ethically appropriate. It was a very difficult situation.
VL: What was the outcome?
AG: Actually I think it would be unjust to the other patients who had been waiting and who were more immediately in need, whose lives were more immediately imperiled. It was a very hard decision.
MS: I was remembering the case. That was a case that generated a lot of disagreement. There were some of us who thought that because she had been a voluntary donor of her own kidney, a good samaritan, that ethically speaking it ought to count for something. When such a person who now had one kidney, and needed....
VL: Ethical brownie points?
MS: In a way, but these situations are pretty unusual. Most kidney donors go on to lead perfectly normal lives and rarely need any kind of kidney treatment.
AG: There was some kind of laboratory toxicity, I think, that happened with this woman.
VL: Since there are centers like yours, not nearly as good as yours (that goes without saying), other centers at all the major teaching hospitals across the country, if that decision had gone through the teams at all the other medical facilities, would the outcome have been totally different? Does each ethical group have a different perspective, is the outcome completely arbitrary depending on who shows up at the meeting that day?
MS: Unfortunately, we don't know the answer to that question. You could ask the same question about a group of cardiologists who have come to the bedside to offer a consultation about a complicated case, and you could ask the question "would groups in this hospital or that hospital come to the exact same conclusion around a particular patient?" Even that has not been particularly well studied. But with regard to ethics we just don't know if a decision reached in a particular hospital in Chicago on a given afternoon would be the same as at another hospital in Boston or Philadelphia with the same set of facts.
AG: Same questions. Same underlying principles. But the individuals involved, including the patient, are so unique we can't be sure we're the same any more than the common law is.
MS: If we take Mr. Payton's case, which has been in the news and many people have followed it, I think it's quite clear that he needs a liver, he will go on a waiting list for a liver, he will qualify for a liver based on the standard criteria that are used to determine how long it takes, because there is a shortage of livers. That will be waiting time on the list. Mr. Payton's medical need, how seriously ill he is, blood type will have something to say about it, and the geographic region in which he's waiting for the liver. Those will be the 4 things, rather than how much he's admired and idolized by many of us who remember his great career in Chicago.
VL: Once you've made these terribly difficult decisions, then that information is used how?
MS: What we do is we provide that information back to the people who called us in on the case - the doctors, the patient, or the doctors and the family who have invited us to participate in the case, and we will then provide our assessment of the situation, the information we've gathered, and what our recommendations are. We don't impose those decisions on them.
VL: How often is your recommendation taken? or used to help the situation? Do you sometimes end up reconciling people to those decisions?
AG: Yes we do sometimes, especially when there are family disagreements, when you have a number of family members, some of whom want aggressive care, some of whom think enough is enough and to let palliative care start. We often go and speak with the family and spend a lot of time until they come to one consensus or another. Unless we're asked very specifically, we don't offer our final recommendations, but we do like to get a consensus together.
MS: What Mrs. Goldblatt is saying is, I think she's bringing out a point I had neglected to make, the ethics consultation arrangement is more a process than it is a decision, and the process that Mrs. Goldblatt is describing, clarifying the problems, bringing the people together who are disagreeing to negotiate and discuss things, helping to structure the issues, often is as important if not more important than actually giving an answer. Because there often isn't a particular specific answer in these complicated matters.
VL: This question is going to come up: I wonder how and where the issue of money and finances - I know it's not supposed to affect your decision, but it could easily affect the decision of other people involved in the case - HMOs, managed care, a family that perhaps cannot afford a certain type of treatment and care - how does that get taken into account?
AG: We very specifically do not involve ourselves with the cost of the treatments. This is a teaching hospital, the physicians are on salary, there is managed care but we're insulated from it. Certainly I think that in the future there will be many questions about the appropriate distribution of resources within managed care, but now we really quite explicitly do not involve ourselves in coverage issues or money issues.
MS: Even the most extreme advocates of managed care will concede that medical decisions primarily ought to be based on patient needs and patient wishes along with the medical recommendations. Clearly the ethical issues that managed care have already raised in this country are substantial and are going to continue: who should make decisions, the doctors and the patients, or the payer of services, questions about financial conflicts of interest that can exist in determining patient care, questions about the gag rule, which has now been prohibited, which doctors were not permitted to talk to patients about options that were not available within a particular managed care system. Those are in a way new ethical issues and as Mrs. Goldblatt says "at the University of Chicago, a teaching hospital, we're slightly insulated from those, but our patients, many of whom are managed care patients, are not insulated from them."

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