Chapter 08: The Ethics Committee at MD Anderson, Part I: an overview

Chapter 08: The Ethics Committee at MD Anderson, Part I: an overview

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Dr. Ewer begins this chapter by stressing that MD Anderson has always been interested in ‘doing the right thing for patients.’ He goes on to sketch how that desire was first formalized when the Ethics Committee was formed under President Charles. A. LeMaistre [oral history interview]. Dr. Ewer sketches the membership of the committee. He then talks about the main types of policy issues the Committee worked on during the period when he was a member and chair (1985-1993; 1988-1993). First he discusses the committee’s development of a “decision triangle” to determine the weight that patient/family input should have in medical decision making. Next he talks about how MD Anderson stopped the current (in the 80s) “go slow” code in use at many institutions. Next he explains why the Ethics Committee decided not to become involved in the IRBs and examine issues in research protocols, but focused on clinical situations.

Dr. Ewer notes that the Committee made many controversial decisions, which eventually led to its disbanding (as sketched in the last session). He discusses two cases of controversy.

Identifier

EwerMS_02_20180725_C08

Publication Date

7-25-2018

City

Houston, Texas

Topics Covered

Building the Institution; The Researcher; Research; Building/Transforming the Institution; Ethics; Professional Practice; The Professional at Work; Patients; Patients, Treatment, Survivors; Understanding the Institution; MD Anderson History; MD Anderson Snapshot; Overview; Definitions, Explanations, Translations

Transcript

Tacey A. Rosolowski, PhD:

Today is July 25, 2018, and I’m sitting in the Reading Room of the Historical Resources Center, and talking with Dr. Michael Ewer, our second session. So thank you very much for joining us.

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

Delighted to be here.

Tacey A. Rosolowski, PhD:

Yes, cool. Well, delighted to have you. And we strategized a little bit before, and decided that—oh, and let me just say for the record it is quarter after 10:00. So we have that on record.  

Tacey A. Rosolowski, PhD:

we strategized a little bit, and I wanted to get a little bit more of the context of ethics in the institution. So I was hoping that you could give me a little bit of background, of what kinds of ethical practices, or what was the perspective on ethics at the institution before you really got involved in the ’80s.

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

I think the institution was always concerned about doing the right thing for our patients. The idea of moving conflicts of interest and other controversies to the forefront came in well-organized pushes in that direction, but the institution, at least for all of the time that I have been here, never really did anything other than trying to further doing the right thing within the context of what we’re able to do for our patients. We wanted, on the one hand, to give patients some choices where there were legitimate choices, but the push, then, for formalizing this, under a code of ethics, came under President LeMaistre. And President LeMaistre then appointed John van Eys to get a group together, and that became the first Ethics Committee, and to formulate our first Code of Ethics.

Tacey A. Rosolowski, PhD:

What was Dr. Eys’s specialization that made him good for that?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

Dr. van Eys was a pediatrician. He was the head of our—I believe he was the head of our Pediatrics at the time. And Dr. van Eys and I had many interesting discussions, some theological, because—I think we mentioned it before—I did take some theology courses while I was in medical school. And I think he was an excellent choice by Dr. LeMaistre to spearhead this. Among the people originally involved was Andrew von Eschenbach. I was not initially involved. Sister Alice Potts was involved. And I joined perhaps one or two years later, because I was doing all of the critical care. And then Dr. van Eys, when he left the institution, suggested that I take over, and that was then approved by Dr. LeMaistre. During my tenure, we also had Annette Bisanz. I’m not sure whether she’s still with the institution or not, but she was very active in ethics, may still be.

Tacey A. Rosolowski, PhD:

I’m sorry, her last name?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

Bisanz, B-I-Z-A-N-Z [sic].

Tacey A. Rosolowski, PhD:

Okay. I haven’t heard that name before.

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

Yeah. Colleen Gallagher would know about her. And we also had the Vice President, Charles McCall, on our committee. And we had Al Gunn on our committee. Al Gunn was—is—an attorney, and had appointments at both the Medical School and at MD Anderson. And he presented points of view that were perhaps more in keeping with the Catholic perspective. And we always encouraged his point of view, although we didn’t necessarily always agree with him.

Tacey A. Rosolowski, PhD:

I was going to ask you, you know, about the composition of this committee, because it seems like it was bringing together a variety of perspectives, not only within the institution but also personal perspectives. So tell me a little bit about the subjects of your discussions. You know, like, how did this group work together? You know, how did the leadership emerge? What was it like interacting with these folks, and wrestling with these issues?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

The issues at that time were very, very often end of life issues, issues of a patient wanting to have things done that physicians felt they could no longer offer in good faith. The concepts that I brought to the committee that helped put some of this in perspective were a spectrum of possible answers. We defined that as a decision triangle, and that evolved very early in my course of working with the Ethics Committee, probably in the early ’80s, but I’m not sure of the dates. And that was that when there were very, very clear guidance from knowledgeable people about which course should be taken, then the input of the patient should be less than when there were ambiguities. The example that I use when I teach about this is the patient who comes in with an acute ruptured appendix, and everybody who is knowledgeable about that says, “This patient needs an immediate operation.” Then there should be a certain push to move in that direction. If, for instance, the question was, “Well, we could treat this particular malignancy at that time with radiation or chemotherapy,” and radiation was more likely to have some complications, and radiation would have less of this, but chemotherapy might have more, and half the people would say do one and half the people would say do the other, then that should be compelling reason to have the patient make the decision. And so we formulated that as a decision triangle. I actually published the decision triangle. I can send you a copy of that paper, if you’d like. But that came out of our Ethics Committee very quickly. That was not to suggest that a patient should be coerced into something that they fundamentally didn’t want, but if it was something that was so clearly a no-brainer on the part of a big coalition of healthcare professionals, we almost had to question why a patient was choosing something else. Is the patient competent? So we looked at competency. We looked at end-of-life decisions. We looked at whether or not patients should have the ultimate say in resuscitation, even when it was very clear that resuscitation should have no benefit. We stopped abruptly any perception that we would do certain things so that we could say we did them, but didn’t plan to do them fully. At that point, there were a lot of centers that had a go-slow code, so that patients would have the feeling that we were doing something, but we knew it couldn’t work anyway, so we didn’t want to do it with a gung-ho way. We immediately stopped that. There was no such thing anymore, at least after I was in charge of Ethics, as “This is a charade.” That just would not be acceptable.

Tacey A. Rosolowski, PhD:

And just for the record, I wanted to say the dates that I have from your CV is that you were a member of the Ethics Committee from 1985 to 1993, and chaired the committee from ’88 to ’93. So those dates sound correct to you?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

That’s probably right, yeah.

Tacey A. Rosolowski, PhD:

Yeah, okay, okay. So, yeah, I mean, I’m really glad we’re speaking in more detail about this. What were some... Were there other practices that you folks weighed and then decided, well, we need to start this, we need to stop this? Because I noticed, I mean, you have a lot of publications in the area. You got very involved with the legal side, and we can talk about that later.

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

What we did not do is we did not involve research. We questioned whether or not we should have the ethics committee review research, but at that point the IRBs were not as well-established as they are now. And we got pushback real vigorously.

Tacey A. Rosolowski, PhD:

What was the reason for that?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

Oh, the research people thought that they didn’t need an ethicist telling them what to do and what not to do. They were going to do research. And very good research came out at that time. As we evolved, research became more and more under scrutiny, which was also right, and it was probably not a bad decision to say that the Ethics Committee should be more a clinical ethics rather than a research ethics group. So it was—

Tacey A. Rosolowski, PhD:

Was the Ethics Committee in agreement about that? Were...?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

The Ethics Committee offered the opportunity to the institution to look at this, and the institution was not ready at the time. It could’ve gone either way. It was not a big concern.

Tacey A. Rosolowski, PhD:

Yeah, I mean, I’m just curious. I mean, there’s certainly a lot in the wind at the time. Yeah, absolutely. Were there other key decisions that you made during that time?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

Well, there were decisions, some of which were very, very controversial. And I think part of the impetus to disband the Ethics Committee and develop an Ethics Department, rather than to have a physician serve as chair of the Ethics Committee, and that physician had other responsibilities, that was then abandoned, and we had a full-time ethicist. That was perhaps—and this may be my perception, rather than the facts—was that we had several very controversial decisions, and I think we talked about some of those last time.

Tacey A. Rosolowski, PhD:

Yeah, we did, with the pharmaceuticals, and... Were there others that were problematic for the executive leadership?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

There was a problem of an individual who I believe suffered a traumatic injury through a fall, and was deemed to be braindead. And the Ethics Committee took the position of if somebody has met the criteria for brain death, and we do not feel that the state law, stating that brain death is a criteria for determining death, that somebody who had been declared dead should not be maintained on life support for the preference of the family to get other family members in from other countries. And there was a big controversy about that. One of the clinicians was, I believe, uncomfortable that he might have a higher risk of a lawsuit if we didn’t placate the family, and the Ethics Committee said, “If the criteria for death has been met, and there is no controversy that the establishment of brain death in the state of Texas is legitimate, then this person is dead and we need to stop treating it—treating him or her,” in this case a him. Anyway, these—

Tacey A. Rosolowski, PhD:

Now, when you said—I’m sorry—when you said it was controversial, was this something that was debated around the institution, or was—

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

Well, it was debated in the Ethics Committee, and then it was debated in the institution, because the attending physician said, “What harm is it going to do for me to keep this patient on a ventilator?” On the other hand, we had nurses who said, “I’m not being paid to take care of corpses.”

Tacey A. Rosolowski, PhD:

Yeah, yeah. So it wasn’t something that the executive leadership got involved with. It—

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

And then eventually the executive leadership, I believe, got involved in it, but they, in this case—I mean, there was even quite a bit of discussion in the Ethics Committee, and the Ethics Committee said, “Based on those two criteria, did the patient have...?” It would’ve been so simple if the doctor had not asked the neurologist to determine brain death. If he had said, “No, I’m not ready for that,” you probably wouldn’t have had to have a big controversy about it. But having determined brain death, and not having that as a matter of controversy, not “I disagree with the doctor, the doctor didn’t do it right...” No, the doctor did it right. There was no question about this patient meeting the criteria. But the doctor didn’t want him to meet the criteria. The doctor wanted him to be not brain dead so that he could placate the family.

Tacey A. Rosolowski, PhD:

The family. Was there a kind of collateral issue with the family being, perhaps, of high status, or...?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

The family was a very wealthy family from the Middle East, and the philosophy of the Middle East is that taking somebody off the ventilator is playing God. And we took the position that putting somebody on a ventilator is playing God.

Tacey A. Rosolowski, PhD:

Oh, interesting. Okay, yeah. Do you think that’s the same decision that would be made today, in the ethics realm?

Michael S. Ewer, MD, MPH, JD, LLM, MBA:

The State has stepped in, and has now made certain—has certain criteria for establishing do not resuscitate orders. I think the person who has been declared dead is dead in the state of Texas. Now, we had a case two years ago, I believe, in California where somebody was declared dead, and a death certificate was initiated, and the family said, “No, we don’t believe it,” took the case to New Jersey, where they said, “Well, you know, if you don’t believe in brain death for religious reasons, we’ll keep people alive,” and now this poor child is still alive in New Jersey somewhere. You probably heard about that. So there is still controversy here. We had these cases, and they were difficult cases.

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Chapter 08: The Ethics Committee at MD Anderson, Part I: an overview

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