A Brain Dead Little Girl Raises Some Big Questions

21 thoughts on “A Brain Dead Little Girl Raises Some Big Questions”

1. I couldn’t agree more-death is no longer a simple notion, however it remains an inevitable reality. Having served as a hospital chaplain for over 27 years and member of the Pediatric Ethics Committee for over 20 years, I have been directly involved in similar situations hundreds (or more) times. I have followed with more than passing interest this case and others that have managed to become escalated to the level of media coverage. I can’t help but wonder, “Where is the hospital chaplain?”
   This case in particular begs that question, since by most media accounts, the family’s primary basis for their actions appears to be their faith in a supernatural, miraculous act of God. It appears from the media accounts that they are being supported by a rather fundementalistic and literal faith community that adheres to a “vitalist” belief regarding death. Again, according to media reports, the parents and their supporters hold fast to a belief that God can heal even a dead person, eg Lazarus of the Christian Bible. This belief system mimics our death-denying culture while ignoring a basic tenet of Christianity, that human life ends in death and only by the grace of God do we receive the gift of life eternal. A message for the chaplain to deliver.

   God d

   1. Like Mr. Burdette, I don’t know whether pastoral care was consulted to assist with discussions with the McMath’s.
      Whether and how pastoral care’s assistance could have broken through the logjam is unclear to me. First, we’d have to clarify what sort of miracle the McMath’s are praying for. The miracle of raising the dead (Mr. Burdette’s assumption)? Or the miracle of saving their daughter from a certain death? Two very different kinds of miracle, I think. The McMath’s may be clinging to the second, rather than the first.
      Second, we’d need a way to constructively bridge what may be a very deep theological divide. As Robert Veatch reminds us in the next post, the concept of brain death is theologically untenable in some religious traditions. In a culture as religiously diverse as ours, what’s the theological argument to show that those traditions are wrong?
      One last comment. I don’t think “denial of death” is a very illuminating label for the phenomenon that Mr. Burdette wants to point to, however commonly the label is used. I’ve never met an adult who denies that he or she will die. There is no choice over whether we will die. The question is when. Other things being equal, we’d rather it be later rather than sooner. We “cling to life”, we might say, which sounds much less crazy than “deny death.” The McMath’s are clinging to their daughter’s life. When we describe it that way, we gain a much more sympathetic appreciation of their struggle, which may be within themselves, and not just with the “authorities.”

2. Tomlinson gets this almost exactly right. Death is death and both McMath and Munez would be dead in all U.S. jurisdictions and most of the rest of the world. That isn’t quite right, however. They would be alive in New Jersey if they had executed a document indicating they preferred circulatory-based death pronouncements on religious grounds (and, in McMath’s case, parents had the right to execute the document on behalf of a minor). Also, in New York, state policy encourages hospitals to develop policies to make reasonable accommodation to family beliefs. Moreover, in Japan, both would be legally alive unless they had executed documents preferring brain-based death pronouncement, were candidates for organ procurement, and had family agreement with pronouncing death based on loss of brain function. Hence, even the law is not quite as clear as it might appear.

   More important for an ethics debate, there remains a persistent minority of Orthodox Jews, right-to-life Catholics, fundamentalist Protestants, Native Americans, and Asians (a minority I estimate to be about 10% of the U.S. population) that continue to believe persons with circulation are alive even if the brain function is lost irreversibly. Also, some of the wisest secular philosophers and physicians (Shewmon, Truog, Miller, Pellegrino, Gomez-Lobo) support circulatory-based death pronouncement on philosophical grounds. There nothing unscientific or illogical in their view.

   It is even more complicated. An even larger minority (I estimate as much as nearly 50%) believe one could be classified as dead even if some lower-brain functions remain. They would have, as Tomlinson hints, considered Terri Schiavo deceased as soon as irreversible or permanent vegetative state was confirmed.

   Having realized that the whole-brain position recognized in almost all U.S. state law is actually a minority view, with some holding a more conservative view and a large number of religious and secular people holding a more liberal (higher-brain) view, it makes sense to ask whether the current whole-brain laws are really defensible.

   A wiser policy would be to adopt a default (probably the whole-brain, middle-of-the-road view) and then let people whole have strong philosophical or religious views opt for either circulatory or higher-brain positions. Both Japan and New Jersey already have variants on this proposal (without the higher-brain option). Contrary to widely held opinion, no significant consequences would result as long as opting for the circulatory view did not imply a right to continued life-support. Such support should be excluded from normal insurance. The public should not be expected to fund such treatments of living people with dead brains, but, as long as McMath’s mother or willing volunteers pay the costs, no major new moral issues are raised. Similarly, they could be permitted to buy insurance riders to cover the cost. Of course, letting people pick the higher-brain view would be very similar to letting such persons opt for refusal of life-support, having no significant implications except that organs would be available slightly earlier. It is time for amending the definition of death to permit a “conscience clause” so that people could choose a definition based on their person convictions.

   1. Robert Veatch helpfully refines my crude generalization. While it’s still true that someone who is brain dead can be declared dead in all 50 states, the law doesn’t require them to be declared dead in those states that have the religious exemptions Dr. Veatch describes. The existence of these legal exceptions testifies to the depth of theological divisions over the meaning of “dead,” and raises the question of whether mandating a single conception of death that runs contrary to some deeply held religious views infringes freedom of religion.
      Still, as Dr. Veatch suggests, we can’t allow a free-for-all where people opt for whatever criterion of death happens to suit their tastes and interests. Determining whether, and when, someone has died has too many legal and social repercussions that could magnify the chaos. If brain death is accepted as the default for these purposes because something has to be, the choice of brain death will be warranted by a web of pragmatic considerations, not by a coherent and universally accepted theory of death. The question whether brain dead is “really” dead won’t have gone away.

3. We confront this issue not infrequently. We all know there are religious groups (notably Orthodox Jews) and states where brain death does not automatically translate into death. And there are folks who value any kind of life, including one which requires extensive support to maintain a beating heart. You may imagine my philosophy is a little different.
   The reality is that in many states, brain death (especially whole brain death) is legally dead and there is no LEGAL obligation to continue treatment.
   That being said we not infrequently see families who just want more time with their brain dead kids and at least in our institution, based on family centered care, we in general have ceded to that request.
   Arguably the patient is brain dead and therefore not suffering and we are doing what the family wants. But this approach has its costs both financially, use of resources such as nursing and wear and tear on the staff who are usually quite troubled in the situation.
   Most brain dead people cannot sustain body function forever or even for months, so most commonly this ends in days to weeks. However, the question of what to do if it continues for longer is a significant one and one would hope that a lot of negotiation with the family might eventually lead to a consensus to let go.
   As pointed out by others, the definition of death is no longer in the dictionary and is not even in the category of “I know it when I see it”, thus leading to more such cases.

   1. It is often said that there is no legal obligation to treat dead people. I have said it myself, but I know of no litigation or statute that has established this as legal fact. I can think of several situations in which it would at least be immoral to stop medical support of dead bodies. The most obvious would be a recently declared patient who is an organ donor awaiting the arrival of the procurement surgeon. Stopping would be a serious moral wrong, and I could imagine litigation–perhaps from the recipient who loses a chance at the organs. Another interesting case is the pregnant woman who, while alive, has said she wants the baby to go to term even if she dies. At least if the spouse also wanted the pregnancy to continue and it is medically plausible to continue to a reasonable point of delivery, I can’t imagine grounds for stopping. A third case involves patients who have consented to post-mortem research. I think it would be immortal to stop support if the researcher wanted it to continue.

      All of these cases raise the question of funding. I would not expect the patient’s insurance or the hospital to cover costs, but if the transplant center, researcher, family, or some supplemental insurance provide the funding, I see no financial issue.

      In the end the question of when it is ethical to stop support is independent of whether the person is deceased. Perhaps professional caregivers can unilaterally stop support of some living people (consider the Texas futile care law–which I happen to think is wrong, but nevertheless the law) and perhaps they cannot morally stop on some dead people. Whether there is ever a legal requirement to continue remains an open question.

   2. Dr. Morgan refers to cases of parents who have tremendous difficulty letting go of their brain-dead child. I wonder whether many cases of family insistence that their brain-dead loved one be maintained on life support involve children. I’d speculate that most instances of brain death among children are due to trauma, drowning, or some other sudden and unexpected cause. It would be no wonder, then, if in their disbelief, shock and grief parents needed some time to come to grips with the tragic reality. Dr. Morgan’s “family-centered” response is a compassionate recognition of their deep emotional need. A little additional time may be all that most parents need to make their decision to let go. For some parents, however, the longer ventilator support is “successfully” maintained, the more entrenched their desperate denial becomes. It would be unnecessarily cruel for a hospital to stand on its legal rights in the first case. But in the second case, a unilateral decision to withdraw the ventilator might be the most compassionate course of action in the long run.

4. This sad story, with profound ethical implications, raises at least two questions in my mind:
   1. Will any objective definition of death of a person whose circulatory and respiratory activities are being stably supported (mechanically or otherwise) ever be universally accepted by our society?
   2. Is every person entitled (or doomed) to continued intensive medical care while their death is being contested by invested others?
   The first question is the easiest to answer. In our modern pluralistic society it is unreasonable to imagine a set of objectively-defined criteria of death that would be acceptable to all of our represented faiths and cultures. And while I believe the purpose of the Law is to uphold ethical standards, not to set them, I do see a role for our legal and medical professional leadership to listen to these varied voices, and strive to provide a set of legal healthcare guidelines that the majority of Americans would find tolerable.
   The second question is much more difficult, and beyond the scope of this forum. Let me contribute to the discussion, however, but cautioning against any limitations or extension of futile medical care which involves the ability to pay, or the personal belief system of health care decision surrogates, particularly those under intense duress and vulnerability.

5. This a painful and interesting case. I’ve been a clinician for 25 years and can attest that the lay public in general does not discern between levels of coma, vegetative state, and brain death. Popular (fictional) media and “news” accounts that gloss over the realities of recovery from traumatic injuries create a flawed hope for anguished family members. I agree that clinical staff can help the decision making process by attending to their language and conscientiously educating the family about reality/prognosis. It seems introducing the topic of organ donation can move some toward recognition of reality, whether or not they decide to permit donation.

6. This is a very sad case especially since this happened during a routine surgery. I can only imagine how hard it is to let go of your child, but if the extent of her life will be that she is always hooked up to a machine, how much of a life is that? I am wondering if cases like these actually bring about awareness of Advanced Directives and End of Life Care. Since this patient was so young her consent would actually be from the parents, but I wonder if Advanced Directives should be more important and actually put into place to discontinue the blurred lines of the ethics involved in death.

7. It is very upsetting to read about this tragic story. Do you believe her parents truly understand what state she is in? Is it possible that her heart could stop beating in a few months, therefore proving to her parents that she is actually gone? I wonder if all the false media and television shows surrounding this topic are leading her parents to think a miracle could happen and she could recover. Many medical shows portray these same types of situations and have the patient miraculously wake up years later.

   1. UNfortunately it is not that uncommon for parents to demand continued support while there is a heart rate, no matter how artificially supported. Eventually most brain dead children will succumb, but if there is brain stem function, not so much.
      We are in a place where the patient autonomy seems to trump other principles and caregivers end up caring for children like this. It is indeed very unfortunate.

      1. Parents are indeed more likely to cling to false hope for their children, for understandable is not entirely rational reasons. And they may do so in part because they simply can’t understand the message that their child is dead, despite the beating heart, etc. Actually, few people can understand it, for the reasons I’ve explained. Health professionals who rely on this message may be setting themselves up for failure in these situations. The focus should more profitably be on chances of recovery (zero) from a condition utterly at odds with the life and the dreams their child previously enjoyed.

         This is the approach I recommend, but there’s one catch: it will be harder to stick to if the parents want their child to be an organ donor. In most circumstances this will require that the child be declared dead while still supported on the ventilator. Even so, this will be a step easier for the parents to accept if they’ve already agreed that the ventilator should be withdrawn.

      2. It is important to distinguish cases in which family have a false hope for possible recovery from those in which the family accepts the prognosis transmitted by the clinician, but disagrees with the judgment that life-support should be stopped. Whether the patient is dead by brain criteria or legally alive, a persistent minority of people in the U.S. believes that people with beating hearts are not only alive but should be maintained with life support. These people are making no mistake about medical fact. If they are wrong, they are wrong in their moral judgment, a judgment not amenable to arguments based on factual claims. Those of us in the majority who believe in death measured by brain criteria or who believe in death measured by circulatory criteria combined with the belief that there is no value in preserving unconscious life should have compassion for those holding the minority religious/philosophical view. If no harm to others results from continuing ventilator support, we should be cautious in imposing our majority value judgment. As long as the family or willing supporters of the family are covering the costs–which they apparently are in Jahi McMath’s case–there is no good reason to force majority views on them. Their views may be odd but they incorporate no error of medical fact.

8. Part of the problem is with the term ‘brain death’. Here is what I have previously written about it:

   “‘Brain death’, in the first and most literal sense, means the death of an organ, the brain. But death of an organ is one thing, and death of the organism of which it is a part quite another. Yet the term soon came to be used to refer to the latter as well. . . .[T]he result was a misleading impression that there were now two kinds of death — ordinary (heart-lung) and new (brain-death).

   “The confusion may be avoided by scrupulously restricting the expression ‘brain death’ to the death of the brain and using the term ‘brain criteria’ to refer to the criteria for pronouncing a respirator-dependent patient with absolutely no brain function dead. Such a patient should be considered dead in the same way — and for the same reasons — as a patient whose heartbeat and resperation have permanently ceased.” (“Pragmatism and the Determination of Death,” in Glen McGee, ed., “Pragmatic Bioethics,” 2nd ed. [MIT Press, 2003), p. 195).

   I live in Oakland and have tried in correspondence to make this clear to writers for the San Francisco Chronicle who initially made a complete hash of it, suggesting there were two kinds of death and that Jahi McMath was in one, but not the other.

   Underlying the confusion is a 1974 University of Pennsylvania Law Review article by Alexander Capron and Leon Kass that first proposed the basis of what became the President’s Commission’s recommendation (in “Defining Death”) in 1981. Their proposal refused to countenance consciousness, proposing instead that the death of a human being was purely a matter of biology; i.e., the loss of the integrated functioning of the three main organ systems: (1) central nervous system; (2) respiratory system; and (3) circulatory system. The Commission’s report congratulated itself for its conservatism on this matter.

   The problem here is that a respirator is an artificial brainstem (in the same way, and with the same limitations, that a dialysis machine is an artificial kidney). Why then wasn’t a person whose whole brain was dead, still alive on the Capron-Kass/President’s Commission view if the respirator was functioning as an artificial brainstem? We would still, in this case, have the integration of the three organ systems, albeit with a restricted, mechanical brain stem prosthesis.

   By hewing so closely to biology, Capron, Kass, and the Commission ignored the fact that when push comes to shove nearly all of us (rightly) regard the life and death of a human being as a psycho-biological (not a purely biological) matter. Consciousness (including the potential for regaining [some would add, acquiring] consciousness) is a necessary condition for human, as opposed, say, to plant, life. Someone dead by heart-lung criteria is dead because he or she is, as a result, totally and permanently unconscious. Someone dead by (whole) brain criteria is dead because he or she is, as a result, totally and permanently unconscious. And, of course, someone whose total and permanent loss of consciousness is caused by permanent vegetative state (supposing it can be diagnosed as reliably as we can now diagnose death by whole brain criteria) is also dead.

   1. I couldn’t agree more with Dr. Benjamin’s history of the brain-death criterion of death. The authors he mentions believed that “dead” had to mean the same thing whether we were talking about “dead” people or “dead” azaleas. This starting point fails to understand that being “dead” means something to people; it doesn’t mean anything at all to azaleas.

      But their other objective was to fend off the accusation that in countenancing a new criterion for declaring someone dead, they weren’t introducing a new kind of death– one that was all too handy for facilitating organ transplantation. The death pronounced by brain criteria had to be the very same kind of death pronounced by the traditional heart-lung criteria. And in that regard, they were politically astute, if not philosophically coherent. There would have been no way to get brain-death criteria legalized if the pitch was that this was a new and better way to determine that someone was permanently unconscious.

      1. In 1976 I gave a talk titled “Death and the Concept of a Person” to a meeting of the hospital associations of New York, New Jersey, and Pennsylvania. When I proposed that death was the total and permanent loss of consciousness I was interrupted by jeers and boos from a handful of pro-life activists. The moderator asked for civility and I was permitted to finish.

         When my presentation was over I remained at the podium responding to questions from a handful of people. Then out of the corner of my eye I saw two nuns marching toward me up the center aisle. “Uh-oh,” I said to myself.

         But I was in for a surprise. “We agree with you,” said one. “In our tradition death is the departure of the soul from the body. And when consciousness is totally and permanently gone, so too is the soul. All that’s left is the body.”

9. Only in wealthy, medically advanced countries like our own do we run into these precarious situations in which a body is maintained by a machine. I cannot imagine how hard it must be for the family to be able to feel warmth on their child’s skin but be told that he/she is dead and won’t come back. I think it’s incredibly important for healthcare professionals to fully explain the situation- the common person may not understand physiology. Another interesting ethical point is the expenses, as has been mentioned, and how costly it is to maintain a brain dead patient. I really appreciated Dr. Morgan’s comments on the cost of maintaining a brain dead patient from personal experience. The hospital or insurance shouldn’t be paying for long term care of this sort so for a brain dead person to be kept alive the family must have quite an amount of financial capital. It’s interesting because other places in the world and for lower income groups this isn’t even an option.

   1. Yes, indeed cost is an issue– something like $5000 – $10,000 a day. Even if you were to believe that the patient is not yet dead, the “treatment” being given is of no value to her. One might then argue that this is a lot of money, being spent from a common pool of funds, just to meet the emotional needs of a family who despite our best efforts can’t come to grips with the inevitable. The longer the patient is sustained on the ventilator, and the more the costs mount up, the less acceptable this becomes.

      1. I don’t think it is quite correct to say that the funds are being spent “from a common pool of funds.” There seems to be good reason to believe that, at least since her transfer, Jahi’s treatment is being paid for by willing collaborators who share the mother’s view that treatment under these circumstances is a morally good thing (perhaps because of the belief that even unconscious life is precious). Surely, it is not just to meet the family’s emotional needs. Significant groups of people really believe both that bodies with continuing capacity for circulation are alive and that living people deserve to have continued life-support (especially if they are not suffering). While I don’t share that view, I can think of no public interest that is served in forcing the minority willing to spend their money this way to stop doing so. I can think of many worse things on which to spend money.

10. Aristotle defines human beings as “rational animals.” What separates us from other animals specifically, and generally from any other life form on this planet, is our ability to be rational, which is directly dependent on the ability to be conscious.
    The failure of a human to be an “animal” biologically is readily accepted in our society as death – if the heart stops beating, the body biologically responds (or does not respond) exactly as society would expect a dead body to, and death is easily recognized. However, a human can fail to be rational as well – a result of complete and irreversible unconsciousness – which is not as easily recognized as death in society because artificial aid can allow the body to continue to function biologically. But if the human is no longer rational, by Aristotle’s definition they are only an “animal” now. Rationality is what specifies humans as humans, so if Jahi’s parents still consider her alive, does that mean she has become something other than human? I think this question is ridiculous, but demonstrates that consciousness and rationality is necessary for human life. The death of any other organism on this planet can be defined by only the failure of the vital biological processes. Since human beings are specifically unique to every other organism due to the ability to rationalize consciously, I believe the criteria of death of a human should also be unique to every other organism by defining the lack of this ability in a human as death.

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