Chapter 07: A Shift in Philosophy and the Growth of Medical Ethics at MD Anderson
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Description
Dr. Ewer begins this chapter by explaining that in the early eighties, as a result of his work in intensive and critical care, he began to develop the philosophy that clinicians shouldn’t assume that anyone wants to be in intensive care on a ventilator to die. He speculates that intensive care at MD Anderson may have been the first setting to develop a process of “terminal weaning.” He notes how controversial the practice was, but that his group prevailed in gaining acceptance for it. He next talks about two important figures in ethical care at the institution: the head of the chaplaincy program, Sister Alice Potts, and Jan Van Eys, MD, a former head of the Ethics Committee.
Next he talks about his own role on the Ethics Committee (formed in the early 80s prior to the national mandate for academic institutions to have such a body). CLIPS He gives examples to demonstrate the conventional approach to ethical issues at the time and his new approach that considered ethical cases as an appeals court. One of these cases highlights MD Anderson’s relationship with drug companies and how these contextual factors can influence ethical decisions.
Next, Dr. Ewer explains his view of why the Ethics Committee was disbanded and how this indicates the relationship between the practice of ethics and the administration of healthcare in the institution.
Identifier
EwerMS_01_20180524_C07
Publication Date
5-24-2018
City
Houston, Texas
Topics Covered
Building the Institution; The Researcher; Overview; Professional Practice; The Professional at Work; Discovery and Success; Understanding the Institution; Patients; Patients, Treatment, Survivors; Cancer and Disease; Ethics; Controversy; Human Stories; Offering Care, Compassion, Help
Transcript
Tacey A. Rosolowski, PhD:
Did it take...? I mean, what was the development of your work in critical care becoming more accepted within the institution, or even people being aware of it?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
On the one hand, I think that it was, okay, they can do certain things down there and it gives me more time to take care of other problems. There was also the feeling that critical care took a great deal of communication with families. Some of this communication should have been done much earlier in the course of cancer. All of a sudden the patient is critically ill in the intensive care unit, and I’m sorry to say then, and probably also to this day, a lot of people still die in the intensive care unit, and maybe shouldn’t be brought there. And I think I’m in good company, because I believe our president hinted at that in his talk. But these are things that I’ve been saying for 40 years. We did some of the first outcomes research. We had papers published, one paper published in JAMA about outcomes of lung cancer patients that was actually a feature article translated into Japanese. And then, interestingly enough, we had a Catholic nun, a head of nursing, a clinical nurse specialist, and myself, and we made a philosophical shift. And that philosophical shift was that nobody really—or we shouldn’t assume that anybody wants to be in the intensive care unit on a ventilator and die that way. And we—
Tacey A. Rosolowski, PhD:
What year was this, around?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
This was maybe 1980. And so we told patients, and we told families, that while we were hopeful at some level that putting them on life support would buy enough time for whatever was going on in their bodies to get better, if we were not successful that we would not turn that into an exercise of how long we could keep part of their bodies alive, and how did they feel about that, and how did their family feel about that. And the answer invariably was “Go for it, let’s try, and if it doesn’t work at least we know we tried.” And so we were maybe the first institution that developed a program of terminal weaning.
Tacey A. Rosolowski, PhD:
Of terminal...?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Weaning. Unfortunately, we never wrote it up. I’m not sure why we never wrote it up, but it was very controversial.
Tacey A. Rosolowski, PhD:
What were the arguments for and against?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
One of our senior faculty thought that this was tantamount to what the Nazis had done during the war, and expressed that. Some felt that we had this obligation to keep these people alive for research purposes, and for us to encourage them not to have six more days of data when they were clearly dying was contrary to the research interests of the institution. But we prevailed, and in part we prevailed because of Sister Alice Potts. I don’t know if you know about Sister Alice Potts.
Tacey A. Rosolowski, PhD:
I don’t.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Sister Alice Potts—there are still many of us who look back on her as a most amazing resource in critical care. And so we did this. There were people who, partly politically and partly otherwise, were terribly much against it, but when they had the opportunity they did the same thing. I mean...
Tacey A. Rosolowski, PhD:
Do you want to tell me about Sister Alice at this point, or should we return to her in a bit?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Sister Alice Potts was here when I came. She was a nun in—I think all nuns are Catholic, aren’t they? As far as I... There’s me with my—
Tacey A. Rosolowski, PhD:
There are some Buddhist nuns, but—
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
I’m sorry?
Tacey A. Rosolowski, PhD:
There are some Buddhist nuns, but... Yeah. (laughs)
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Okay, but anyway, Sister Alice was clearly a... And she was just there, and she was there for everyone. It didn’t matter what their faith was.
Tacey A. Rosolowski, PhD:
Now, was she part of the chaplaincy program?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
She was part of the chaplaincy program. And she was also on the Ethics Committee, and the Ethics Committee was started by Jan Van Eys. And Jan Van Eys then moved, I think, to Vanderbilt, but I’m not sure. I don’t know whether you know about him. Jan Van Eys was a pediatrician, and really a giant. And because of my critical care, and my critical care experience, I then joined the Ethics Committee. And then when Van Eys left, I was the chairman of the Ethics Committee, and that went on for ten years, until they fired me. They shut it down.
Tacey A. Rosolowski, PhD:
Oh, they did. Okay, so you joined the Ethics Committee in 1985, is the date I have here.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Yeah, that may be correct.
Tacey A. Rosolowski, PhD:
Nineteen eighty-five to 1993, and then you were chair from ’83—during that period, ’88 to ’93 you were chair.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Yeah, yeah.
Tacey A. Rosolowski, PhD:
Okay. So let’s talk a bit about the Ethics Committee, I mean, because one of the things I obviously wanted to ask you about is the whole evolution and formalizing of ethics here at MD Anderson. So prior to—when had the Ethics Committee formed? Do you...?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Ethics Committee probably was formed around 1981, early ’80s, sometime around there. I’m sure Colleen Gallagher could give you more information about that. And they developed the initial Code of Ethics. And I approached the Ethics Committee in a slightly different way, different from prior and probably different from now, but as I teach about ethics committees I still think there’s much justification in the approach that I took back then, and eventually it’ll come back, and that is that the ethics committee should look at individual situations, very much like an appeals court, so that if we have... May I give you an example?
Tacey A. Rosolowski, PhD:
Absolutely.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Okay. If we have a patient, for instance, with Downs syndrome, and that patient is being looked at because they also have leukemia, and somebody wants to do a bone marrow transplant and somebody doesn’t, and they take this to the Ethics Committee, then the Ethics Committee should first frame the question. And so the question might be: to what extent should a disability impact on an unrelated condition with regard to decision-making about the care of that unrelated condition? That’s the big picture question.
Tacey A. Rosolowski, PhD:
So it’s like setting out the procedure at this point.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Okay. Then, the law is very clear. The Americans with Disabilities Act suggests that certain things can be modified, but not in a prejudicial way. Okay. Is Downs a disability? Yes. So if the analysis turns out that the bone marrow procedure, with a stem cell transplant, could not be handled by this patient because of their intellectual capacity, then it is reasonable to modify the treatment. But if they could, to make the judgment on the value of the patient in the face of the disability, it is not ethical. And you take that, and you hand it back to the attending of record, and say, “Here is the analysis that you should be following, and now make the correct decision.”
Tacey A. Rosolowski, PhD:
How was that approach—or, I’m sorry, you look like you’re going to—
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
No, no, that’s... I think you got it. (laughs) I mean...
Tacey A. Rosolowski, PhD:
Yeah. Oh, yeah, I do have it. Now, so my question is: how was that approach, the one you brought to the Ethics Committee, different from how things were handled previously?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Previously, it might have been approached as “The Ethics Committee thinks that it’s perfectly okay to proceed with a bone marrow transplantation on this patient.” Or, “The Ethics Committee finds no ethical controversy with proceeding.” And so I tried to give it a broader view. I mean, I’ve always had the concept of looking at things in a broader way, and that’s just how I perceived this. But you may hear very often that our United States Supreme Court says that this is a matter of such-and-such, and now we’re sending this particular case back down to the lower court to adjudicate that, on the basis of this procedural judgment. And so this is what I brought to the Ethics Committee. And there were a couple of very controversial cases.
Tacey A. Rosolowski, PhD:
Can you talk about those?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Yes. I’m going to get myself in trouble, but I’ve been in trouble, as you may have noticed. (laughter) Two women are talking. One has just lost her husband, and one has a husband in the intensive care unit. And one looks at the other and says, “What’s happening with your husband?” “He’s in the intensive care unit, and I’m trying desperately to get an experimental drug for him to try.” “What’s going on?” “Well, he has an infection, and we’re looking for this drug, and we can’t get it.” And the other woman says, “I can help you.” “How? What can you do?” “My husband died this morning. He was on that protocol. They’ve asked for the pills back, and I lied. I told them I threw them down the toilet, but I didn’t, because I thought maybe he would survive and have another infection and we would need them. But he’s gone now. You can have them. Here are the pills.” “But the patient is unconscious. We need the nurses to give the pills. It’s against federal law. It’s against state law. It’s against everybody.” “Take it to Mike in the Ethics Committee.” So we look at that. The big question is: this is a matter of balancing interests. Is it in the interest of the drug company to be able to count these tablets and destroy them? And how does that balance with other interests? Is it in the interest of the institution to compromise patient care in an objective way to keep us in compliance with our contractual agreements with drug companies about these drugs? And do we have an obligation to our patients when we tell them “The interest of the institution in throwing these drugs away was much more important than trying to save your husband’s life”? So the attorneys get involved, and the attorneys say, “You can’t do it.” And the Ethics Committee, or in this case me, says, “Well, you know, there are situations where ethics and the law are in conflict.” And unfortunately, the lawyer said, “Can you give me an example of that?” And this is in our committee. Do I dare? “(inaudible) you’re only following the laws!” (laughter) And with that, I believe Dr. LeMaistre [oral history interview] and the head of the FDA got on the telephone together and said, “This idiot in our Ethics Committee is making us give this. Let’s find a way out of this.” The patient got the medication. Patient died three days later. The doctor who forced us to look at this kept in contact with the spouse for decades. She never forgot the effort made on behalf of the patient. And do you know what happened yesterday?
Tacey A. Rosolowski, PhD:
Tell.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
The United States Supreme Court approved a patient’s right to try.
Tacey A. Rosolowski, PhD:
Wow. Wow.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
That’s how far ahead we were back in the ’80s. (laughs)
Tacey A. Rosolowski, PhD:
That’s amazing. That happened all the way back in the ’80s, of course under Charles LeMaistre. Yeah. Wow.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Of course, Charles LeMaistre is now gone.
Tacey A. Rosolowski, PhD:
Right. Yeah.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Sorry to do this to you, but you asked for it.
Tacey A. Rosolowski, PhD:
No, I live on this. (laughter) I live for this. This is good stuff. I mean, so one of the things, when I was talking to Colleen Gallagher, who’s an interview subject of mine for another project, and she also has become a friend, and so—
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
She’s, by the way—and now we’re off the record—
Tacey A. Rosolowski, PhD:
Okay, well, let me pause.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
I don’t care whether you record it or not. She is the most remarkable woman. In fact, she is the closest that I have ever seen to Sister Alice. And she was also, I think, a nun.
Tacey A. Rosolowski, PhD:
Yes, she was. Yes, from—
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Yeah, yeah. There are some people who can just move into a role of being so supportive and helpful, not just to patients but to everybody, and I have developed not only respect, I have developed incredible admiration for that woman. Now we can go back on the record. (laughs)
Tacey A. Rosolowski, PhD:
Okay, okay. Well, that’s very lovely.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
You know, we did a book together.
Tacey A. Rosolowski, PhD:
Yes, I saw that.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
I was initially the one involved in that book, and I was so pleased with what she was doing that I turned the senior authorship over to her.
Tacey A. Rosolowski, PhD:
That’s neat. Ethical Challenges in Oncology, yeah, published very recently—what, last year or year before?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Yeah. Yeah, yeah, I still dabble.
Tacey A. Rosolowski, PhD:
Yeah, absolutely. Well, I mean, in fact, she’s the person who strongly suggested that I speak with you, and I’m really delighted for that suggestion. And I also asked her to give me a few pointers, and she said, “Well, there are kind of three eras of ethics at MD Anderson, and there was a first era,” and maybe it was a former chair of the Ethics Committee—Pentz was the name?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
That was later.
Tacey A. Rosolowski, PhD:
Okay, all right. So anyway, I would like to kind of get a sense of what is the arc of the evolution. You know, why was the Ethics Committee even formed at the time it was?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
The Ethics Committee was formed even before the mandate to do so. There was a mandate that came down that all educational affiliated hospitals—and somebody would have to do some research on that to make sure that I’m getting it right—have an ethics committee. I mean, I have slides on it if you ever need to know more about it, because I give lectures about this all over the place. And so first it was Van Eys, and then it was me. And then after some of the very controversial things, like the one I just described to you, there was another one where somebody had been declared braindead by criteria, and the nurses did not want to take care of a braindead patient, and this was a patient from another country who said, “The patient is alive on the ventilator because his heart is still beating, and I will call my family together, and within a month or so we’ll come...” Whatever, way too long. And the Ethics Committee’s overview is: is the criteria defined by the State of Texas for brain death a valid criteria for death? Do we support brain death? If we support brain death, and if the patient meets the criteria for brain death, then continuing life support on this patient is inappropriate, regardless of the threats of the family member. If there are controversies about brain death, and there are other jurisdictions that say that brain death is reversable under these circumstances, and there is scientific evidence to show that brain death is not a valid concept, that needs to be taken into consideration. That was, again, the big picture. And nobody had any problems with brain death. They had problems taking this patient off because the son promised to sue, and promised this, and promised that, and there were all kinds of other controversies, and why don’t we just be patient? No, we’re not going to be patient; we’re going to do the right thing. And it was a number of these that encouraged Dr. LeMaistre to disband the Ethics Committee, hire Rebecca Pentz, and Rebecca Pentz may have had some inside connections. I believe she was the wife of somebody that Dr. LeMaistre had some connection with in some way. And she was, in any case, a legitimate ethicist, and she took over, and reformulated ethics in this institution.
Tacey A. Rosolowski, PhD:
Now, let me just ask. So I understand we have these controversial, very complicated issues coming up, or scenarios coming up in the institution, that are demonstrating the way that many, many types of considerations are intertwined. Why, at that point, was it felt that the Ethics Committee couldn’t properly address these, that there was a different mechanism that needed to be put in place?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
I’m speculating, but ethics is a small part. The hospital needs to be in compliance. The hospital needs to take care of patients. The hospital needs to provide an educational forum. And the ethics has to fit. So if the Ethics Committee creates an atmosphere that is detrimental to the broader picture of how healthcare is administered in the institution, that has to be addressed. But it shouldn’t have to be addressed by the Ethics Committee. The Ethics Committee should be one component that our president or our top administration takes into account, so that in instances like this the buck stops wherever it stops, and the answer is, notwithstanding the ethical considerations, there are overriding considerations that make the president feel, or the executive officers, feel that a different path must be taken here for the broader interests of the institution. No problem with that. But the Ethics Committee, under my leadership, was not going to say, “We’re going to take those broader considerations into effect.” No, we’re here to decide ethics. We’re not here to decide fiscal responsibility. We’re not here to discuss other things. Obviously the institution needs to have that oversight at the highest level. And it apparently seems to me now, in retrospect, that it was easier to say, “Well, let’s have somebody that takes a broader view of the institutional needs, rather than a focused view of simply the ethics, and expects to have ethical considerations overridden.” The fact that our president at the time—and I never discussed this with Dr. LeMaistre, but that the president would then say, “The ethics people put us in this bind; how do we get out of it?” with the Food and Drug Administration, you know... And the drug company... You know, we don’t want this on the front page of the paper tomorrow. So the Food and Drug Administration agreed that if the drug company agreed to release the tablets, the patient could get the tablets under compassionate [I&D?], and that’s what happened.
Tacey A. Rosolowski, PhD:
But it is an interesting way of wording how you saw Charles LeMaistre’s perspective, that it was a real them-and-us, and the “us” is the drug company and the executive leadership, and the “them” is the Ethics Committee, which is within the institution. Very strange. Very strange.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Yeah, well, he could not have allowed the drug to be given. All we said is, “There’s no ethical concerns, and the ethics suggest that the interest of the patient in preserving life is far more important than the other ethical considerations.” So how is a person like Dr. LeMaistre going to deal with this, other than to say, “Okay, well, the solution to this problem is get the FDA on the phone, get the drug company on the phone, and make me the bad guy, and I’ll take care of him later on”? And, of course, he did. I’m no longer in charge of ethics; Colleen is in charge of ethics, and it’s probably better.
Tacey A. Rosolowski, PhD:
Yeah. (laughter) We’re actually at five minutes of 12:00. Are we at a good stopping place?
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
Whatever you... I mean, this is whatever I can do to help you.
Tacey A. Rosolowski, PhD:
Yeah, no, why don’t we stop for today? This sounds like a good breaking point. And then we can pick up... We have another session scheduled, and we can pick up then.
Michael S. Ewer, MD, MPH, JD, LLM, MBA:
If you wish to schedule another one, I’m game. I have no problem with that. But if we don’t, I will leave you with one comment, with one final comment. When I came here, I didn’t know what to expect, but I have come to love the institution. “Love” is a very strange term in that context, but obviously people love the institution. When people sometimes have to leave, I see tears. I see grief when there is separation. So by saying “I love the institution,” I don’t think it’s that far off. It may not be more than an emotional love, but it is clearly a love of the institution. And when I mentioned that to somebody, and I’m not sure who it was, but when I mentioned it he said, “That’s the way it should be, but don’t ever expect the institution to love you. The institution is like a colony of bees or ants, and the individual supports the colony and loves the colony. Your job is to make the colony survive in whatever way you can, but don’t ever expect them to love you back.”
Tacey A. Rosolowski, PhD:
Those are good final thoughts for the day. Thank you. (laughter) And let me just say for the record I’m turning off the recorder at 11:56.
Recommended Citation
Ewer, Michael S. MD and Rosolowski, Tacey A. PhD, "Chapter 07: A Shift in Philosophy and the Growth of Medical Ethics at MD Anderson" (2018). Interview Chapters. 809.
https://openworks.mdanderson.org/mchv_interviewchapters/809
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