Fall 2000 Newsletter: Medical Ethics: A Transcribed Conversation

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

Parts I, II, and III were published in our newsletters of April and October, 1999, and Spring, 2000
For copies, please call our office.

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: Let's hear from Tim.
Tim: I'm a naprapath. I deal with a lot of patients seeking alternative medical care. A few years ago there was a case with a young boy named Chad Green, and one of the ethical issues was the patient's right to choose alternative treatments. I wondered how you deal with that.
AG: It wasn't the patient, it was the patient's parents in that case. He was 2 1/2. But - and it was a laetrile - they wanted to use laetrile for leukemia. The patient's right to choose medicine, a competent adult, full right, absolutely, unless there's a contagious disease involved. Parents choosing alternative therapies for children can approach child neglect, medical neglect. I think recently we've become more willing to permit alternative therapies, particularly when it's not a life- endangering situation, or when the prognosis with any kind of treatment is grim. So there have been other cases that have permitted naturopathic or laetrile treatment, but it's a very difficult problem with small children.
VL: Those must be, particularly the issues with small children, some of the most difficult work that you have to do, and is there a proportion of the pediatric, neonatal, or just the childhood, part of your job? Is that more time-consuming than the other parts, do you get the same number of patients, do you spend more time on certain types of patients?
MS: I would think that in our group it's probably 50-50, adult to pediatric. But our group does have 4 trained pediatricians, some neonatologists, some in the older infant or child intensive care unit, and some general pediatricians who are trained in ethics and pediatrics. They're a wonderful resource. Dr. Lantos is the associate director of the program, and Dr. Meadow, Dr. Sing, and Dr. Ross are all core participants in our group, in part because of the reason you raised: the frequency with which these complicated pediatric problems come up. Tim's question and Mrs. Goldblatt's answer highlight the fact: how different the ethical standards might be for competent adults compared to infants and children.
AG: We also have problems with pregnant women, fetal, as opposed to the patient. Who's the patient? So the edges of life I think get a majority of our cases. Very new babies and dying individuals.
VL: Because there is so much more premature birth, and viability is being pushed to this extreme level that never existed before, your job is just going to get more complicated all the time. We have a lot more questions.
Sarah: I have a question about what happens if you have an elderly patient who wants to sign a denial of treatment form because that patient feels like a burden to the family. What do you do when there are some members of the family who want the person to sign that and some members that don't, and when it has to do with something like CPR, something that's not very intrusive, but if you sign that piece of paper it won't happen, is there anything to do with the Hippocratic oath, is there any kind of procedure that a doctor has to come and talk to the patient about, or is there any way of determining if the patient is in a mental place where he can make that decision for himself?
AG: OK. Absolutely. A patient must have the capacity to make that decision and I would say it is essential for a physician or other knowledgeable health care worker to discuss CPR with the patient. If the patient doesn't have the capacity to decide competently, then anything he or she signs will not be effective. The problem of not being a burden just brings up the issue that it's unconscionable that we don't have some kind of health care for everyone in this country, the fact that we have to beggar our families in order to get decent end of life care in some situations is unacceptable, but true.
MS: I agree with what you've said.
VL: Another question: Judy - a question about gene therapy.
Judy: I've become concerned about some aspects of gene therapy, specifically the possibility of in-the-future pharmaceutical companies patenting genetic material or techniques. And I know this isn't really related to clinical situations right now but I could imagine that happening in the future, and I'd like the opinions of your guests.
VL: That's interesting. It makes we wonder about if they ever wonder about cloning a body or a part of a body, are you going to have a different standard for the clone than you would for - ?
MS: The cloning of the human and the question of genetic therapy are both in the future. Neither one has yet happened, you know. There has not been yet an effective gene therapy developed. I think Judy's concerns about the likelihood that pharmaceutical companies may want to patent an effect generic therapy is a real concern. Just the way pharmaceutical companies in our country have been encouraged to patent effective new medicines even when they're breakthroughs. I'm not so sure that the patenting of genetic techniques, approaches to studying genes and gene therapy, are likely to be permitted. We're dealing with a new field that's just evolving, and I think it's going to take a huge amount of thoughtfulness legally, socially, politically to resolve the kind of issues you raise.
VL: I think that people still have questions about special treatment of people receiving organs and how an ethicist might affect that.
Judy: I'd like their comments about the Mickey Mantle case and how that came about.
VL: Uh oh. Whatever you just said, it had a huge impact on these two. They're pointing, they're wondering who's going to answer this one. Explain this. I'm not sure what this case is.
AG: Mickey Mantle needed a liver, and got one, although he probably was an inappropriate recipient in some ways.
MS: I got into a lot of problems over the Mickey Mantle case when I was quoted in one of the newspapers saying that, in general, people should wait their turns on the list according to their medical need and length of time, but that Mickey Mantle - here I'm quoting myself from some
years ago- was a true American hero who should go to the top of the list. I'm sorry that I said that. I don't believe it anymore. And people thought that, in fact, Mickey Mantle was pushed to the top of the list because he got a liver in a few days, whereas other people wait months or even a year to get a liver. It turns out
that one of the doctors I spoke with last week, who was in Dallas at the time, says that in fact the liver that Mr. Mantle got was one that had been turned down by many other programs around the country. And so, that in fact, he had not gotten pushed to the head of the list.
AG: Basically, ethically, you should transplant on the basis of objective medical criteria and not celebrity status.
MS: I agree.
VL: This has just been so interesting. There are still a lot of people waiting. I'm so sorry that we have not gotten to all the questions. We'll just have to revisit this topic again. I really want to thank Dr. Mark Siegler, who is professor in the department of medicine and a founding director of the McLean Center for Clinical Medical Ethics at the University of Chicago. Ann Dudley Goldblatt, also there, is the assistant director, and is a teacher in the law school, the medical school, and the college at the University of Chicago. Thank you both so much for joining me today.
MS: Thank you for having us.
VL: WBEZ Chicago