Q&A with John D. Banja, PhD, on brain death
(Editor's note: This is Part 2 of a Q&A with John D. Banja, PhD, who is Professor, Department of Rehabilitation Medicine; Medical Ethicist, Center for Ethics; Director, Section on Ethics in Research, Atlanta Clinical Translation Science Institutute at Emory University in Atlanta. Banja can be contacted at [email protected].)
Banja: Here's a direction in the brain death debate that I think is most interesting: The Religious Freedom Restoration Act. Now, this act was passed in 1993 but in 1997 it was declared unconstitutional by the U.S. Supreme Court. So, the act is no longer in effect.
Nevertheless, its reverberations continue to be of interest. And what the reverberations are is that the government has got to show a very compelling interest as to why it endorses a particular law if that law can burden the exercise of religious freedom of a particular group.
Q: And you thought that was the direction that the attorney was going in the Motl Brody case…
A: That was the direction he was going in. Here's an example of what the law was all about. There's a famous case, Wisconsin vs. Yoder, that came down in 1972. It concerned an Amish community that did not want to educate its children in public schools beyond the eighth grade. This occurred in the state of Wisconsin.
Wisconsin, however, had a compulsory attendance school law that compelled students to continue schooling after eighth grade. I don't know if they insisted that the kid have another two years in high school, or whatever, but the Amish practice of only eight grades didn't satisfy Wisconsin's law.
So, the issue was: The Amish said that our religious beliefs are such that after the eighth grade, we home school our kids or we decide what their education is going to be. So, the question before the United States Supreme Court was: Did Wisconsin's compulsory education law impose an unreasonable burden on the Amish people's right to follow the tenets of their religion?
And the court ruled, in fact, that the state didn't have a compelling interest in ordering kids to go to school beyond the eighth grade.
Now, the Motl Brody case, I think, is kind of similar because here you had a family who followed a particular school of thought in the Hassidic tradition that only recognizes the historical definition of brain death — the cessation of breathing and respiration. So, here their 12-year-old is declared brain dead, but his heart is still beating and he's breathing because of a ventilator.
So, as far as Motl's family is concerned, he's not dead. And therefore, he is entitled to continued medical treatment. However, Motl's heart did stop three days later, as the courts were beginning to get the papers and the briefs together. So, the court made no decision on the case, and the case just was dropped.
But there you are: Does the state have a compelling interest in insisting that the brain death criteria be uniformly followed by every group in every state in the United States? Or does the freedom of religious exercise include the right to insist that a brain dead individual who is diagnosed as being brain dead can continue to receive ICU care, according to the religious beliefs of the individual's family (who are presumably speaking for the individual)?
But remember that the Religious Restoration of Freedom Act was declared unconstitutional back in 1997, so legislatures will have to come up with a new law that would protect that presumptive right — but it's still, I think, a very interesting concept.
Q: But you could still have the brain death determinations or criteria but allow groups that don't agree with them to exercise their own decision making?
A: I suppose you could. In fact, in our previous interview, we talked about a family who took over the care of their brain dead loved one. I mean, if you're a third-party payer, you're not going to want to continue to pay for ICU care for an insured patient if he or she is dead — and therefore no longer insured. How do you handle these instances when the family says, "Well, we will take our individual home, and we'll care for him or her at home"
Who pays for that ventilator; who pays for the nurse; who is going to visit that individual and make sure that his or her vitals are functioning; who is going to make sure that he or she doesn't get infections from the ventilator or bedsores, or whatever?
And suppose a health care professional says, "Well, I'm not going to take care of a dead person, for heaven's sake!"
Q: The questions never end. One question leads to another question, which leads to another question.
A: Have you ever heard of a concept called "the wicked problem"?
Q: No.
A: About 35 years ago, two urban planner professors wrote a paper about wicked problems in urban planning, and what they said was that a wicked problem is not a tame problem. A tame problem is one that if you get some good heads together, they'll figure out a resolution to it.
But a wicked problem is one that is very multifactorial, and in fact, people can't even agree on what the problem is. If you get a whole bunch of them together — they might not even be able to agree on what the problem is. And when they start proposing resolutions, those resolutions bring up new problems, or they'll disagree on which resolution is better or less better.
The fundamental reason for all this is that what you're talking about is a very, very complex phenomenon and it tends to change — like it changes with the politics of a country, it changes with the technology of a country.
Here we are talking about brain death. Well, if ventilators were never invented, we wouldn't have this problem. But ventilators are invented, and here we have these continuing social questions about the freedom of religious expression, and then there are the economic problems — talking about who pays, and asking about third-party reimbursement.
So, you put them all together, and you have this very unstable set of problems that tend to resist a once-and-for-all kind of solution.
Thus, the wicked problem. In fact, we might say that wicked problems are the life-blood of medical ethics. If there were neat solutions to abortion, privacy and confidentiality, end of life, and so on, you wouldn't need ethics committees.
Q: Life is complex.
A: And, also, as the Buddha said in his first noble truth, it's suffering. Life is suffering. And accepting that fact leads to enlightenment.
Q: Which we could all use.
A: Indeed.
Banja: Here's a direction in the brain death debate that I think is most interesting: The Religious Freedom Restoration Act. Now, this act was passed in 1993 but in 1997 it was declared unconstitutional by the U.S. Supreme Court. So, the act is no longer in effect.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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