Science and Defining Life

By Mike Koetting      June 12, 2018

The February 5^th issue of this year’s New Yorker included a long article by Rachel Aviv on the question of what constitutes death. The article was organized around the saga of a 13-year old California girl, the victim of a profoundly tragic surgical mishap. She was subsequently declared “brain dead” but her parents refused to accept that verdict and moved her to New Jersey, one of the two states that have laws allowing families to reject the concept of brain death. She remains there, her breathing supported by a ventilator.

That was four years ago. Not surprisingly, this has provoked law suits, medical opinions, tests, and controversy. Extracting from the article—for what my interpretation is worth—it appears that most of her brain is destroyed, but some relatively small parts are still toiling away. So is she dead or not? Most of the official world, following the Uniform Determination of Death Act, adopted in 1981, says she is dead. On the other hand, the prominent neurologist who has become associated with the case says she is “an extremely disabled but very much alive teenage girl.”

Around this swirl any number of interesting subplots—like the impact of race on all of the events in the story or the material consequences for New Jersey Medicaid or the role of the California malpractice law that limits damages from pain and suffering to $250K for wrongful death, but has no limit if the victim is still alive. Or even whether or not this family can claim a “dependent tax deduction” once one state declares her dead. But I really want to focus on the question of where this leaves the ethical-policy debate.

One thing that seems clear from the article, but was surprising to me, was that the original paper outlining the tenets that became the Uniform Definition of Death Act was based less on “scientific” fact and more on the shared sense of its authors that there should be some line of demarcation of death and that it should not be so extreme as to preclude the possibility of harvesting organs for subsequent transplant. The philosopher Peter Singer, in his typically confounding manner, describes that definition of brain death as “a concept so desirable in its consequences that it is unthinkable to give up, and so shaky on its foundations that it can scarcely be supported.” He continued that this concept of death was “an ethical choice masquerading as a medical fact.”

But now that the mask is off, we’re left with a real dilemma. If the concept of “brain death” is so, excuse the term, squishy, how do we make policy?

For one thing, there is the issue of transplantation. There are now more than 25,000 organ transplants from deceased donors in America each year, a number that has been growing steadily. Various experts believe that continued debate around what constitutes death could slow that trend, although the actual impact is highly speculative.

More profoundly, from my perspective, are the issues raised by a kind of “arms race” to expand the notion of life. It is virtually inevitable that scientists will determine more and more refined ways of determining whether some form of life continues. But do we want to make that the standard?

The same problem occurs at the opposite end of life: medical science will most likely continue finding more and more sophisticated measures of when “life begins”. Moreover, I expect that medical science will also continue to lower the point of viability for pre-term births. Currently, there are about 55,000 very low weight births nationwide, each year. Virtually all of these require some stay in the Neonatal ICU, but those with extremely low birth weights (below 1000 grams) require stunning resources. This was brought home to me when a friend reported that a premature grand-niece had, so far, run up hospital bills in excess of $9M and was not yet discharged from the hospital. Obviously a material portion of those are “sticker prices” not related to cost, but the resource level will be impressive under any formulation.

Left to my own devices, I would not hesitate to adopt policies with relatively wide definitions of death and relatively narrow definitions of viability at birth. I would side with a 2008 Presidential Council on Bioethics that described life as the ability to engage with the surrounding world. I do not have ethical problems with decisions, even slightly arbitrary, that outline clear and consistent rules about how society should make decisions to maximize the common good. Difficult decisions, to be sure, but not making decisions is a decision itself, with even less control over the communal consequences.

But I realize my position, while I suspect widely shared, is not politically viable. I also recognize that others, even if a minority, might have concepts so opposed to my views that this would realistically be considered an infringement on their religious freedoms.

All this leads me to the following considerations:

• I think it would make sense to de-prioritize scientific research that is focused on extending definitions of life. I certainly wouldn’t forbid it, or anything like that. Who knows what other important discoveries might get tossed with the bathwater. But in a world with too many people already and limited resources for scientific funding, shouldn’t there be priorities that focus more on improving quality of life than increasing longevity?
• I wouldn’t do anything to prohibit people from developing their own concepts of what constitutes death. That will only make it more of a political-tribal issue. What the family of the girl in the New Yorker article has put themselves through will, obviously, not prevent all such incidents. But will keep the number relatively limited.
• At the same time, making it clear to the society as a whole what are the costs of expansive definitions of life is a good thing. Not on a case-by-case basis. Those in the middle of these episodes are already going through their own hell; focusing attention on them as individuals is wrong. But in aggregate, if we are going to make rational decisions about the use of resources in our society, we have to understand the implications of categories of choice. Not the least of the related considerations is understanding that when people complain about high healthcare costs, these are among the costs driving the meter. Giving everyone in the country access to efficient primary care is cheap compared to what we spend on extreme cases. I believe, at least for now, we can afford both. (And the reasons we don’t give everyone access to primary care are political not economic.) In all events, we need to be honest about the composition of our healthcare costs. I can’t say it too often: 80% of the costs of our system are spent on behalf of 20% of the people. These extreme cases are part of that 20%.
• Finally, in some ways most importantly, I think as a society we need to be humbled by the increasing difficulty of recognizing the boundaries between life and death. It makes it more important than ever to allow people the right to make their own decisions. There are no “scientific” answers. At best, science gives us clues that might help in our navigation. Ultimately, the issues are ethical, and intruding too heavily into others’ ethics only breeds trouble. Of course, that must go both ways.       

Author: mkbhhw

Mike Koetting’s career has been in health care policy and administration. But it has always been on the fringes of politics. His first job out of graduate school was conducting an evaluation of the Illinois Medicaid program for the Illinois Legislative Budget Office. In the following 40 years, he has been a health care provider, a researcher, a teacher, a regulator, a consultant and a payor. The biggest part of his career was 24 years as Vice President of Planning for the University of Chicago Medical Center. He retired from there in 2008, but in 2010 was asked to implement the ACA Medicaid expansion in Illinois, which kept him busy for another 5 years. View all posts by mkbhhw