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Tuesday, April 7, 2009

Locating an Ethical Dilemma

In the past couple of days my local media have been reporting a story which they say poses a “heart-rending ethical dilemma”. I admit that, upon first hearing about it, although I could understand its being heart-rending for those involved, I could not immediately see the ethical dilemma. As more time goes by, each report gives out a little more information, although I still feel I’m missing some essential piece of information in order to see wherein the dilemma lies. I take this as an example of how poorly-educated journalists are on ethical issues, and how seldom they stop to consider the implications of what they are saying. In any case, here is the story, at least as far as I can piece it together.

Kaylee is a baby who was born with a brain malformation and is unable to breathe without a machine. No report I have seen has given any more detail about her condition than that. For convenience’s sake, I am going to make the assumption that she is for all intents and purposes brain dead and beyond hope of recovery (I would like to know more before making any hasty judgments, but unfortunately that is all the media have given out). Another baby, Lillian, was born with a heart defect that will kill her unless she receives a transplant. Lillian is in the same hospital as Kaylee.

As it was first reported, the “dilemma” seemed to be about whether or not it was ethical to “harvest” Kaylee’s heart at all, which struck me as odd, because such “harvests” — I shudder at the terminology — are fairly routine. The parents wanted it. The prospective recipient’s parents desperately wanted it. There seemed to be no legal issues involved (e.g. it was not a case of active euthanasia). And yet, the hospital was reluctant. Why? The media did not yet bother to inquire. In the absence of the hospital’s motivation, one got the impression that they were callous bureaucratic monsters, denying the gift of life to a little baby for no good reason.

Then, in subsequent reports the story’s emphasis shifted. It was no longer a matter of the harvest as such. Rather, it was now a question of how useful Kaylee’s heart would be: she would take some time to die once taken off life support, and thus her heart might in the process become too damaged for transplant. The thing is, however true this may be, if there is a dilemma at all here, it is a practical one, not an ethical one.

Later, when reported on again, the story seemed tentatively to have something to do with whether the heart should go to Lillian, or to whoever is next on the waiting list. Finally! We are now arriving at some kind of an ethical dilemma. Certainly the situation is ethically fraught. Still, I am not convinced that there is a dilemma here, for what is ethically required seems quite clear: the heart must go to whoever is next on the transplant waiting list.

In the very latest version of the story I heard reported, Kaylee’s parents approached Lillian’s parents on their own initiative, offering their daughter’s heart. In such circumstances, it may seem callous of me to suggest that this very personal relationship forged between these two sets of parents should be set aside because of some list of faceless and personally unknown people who may not be quite as cute or present as Lillian. When good can be done here and now, for someone you know, why look for a different opportunity to do good elsewhere?

In short, because to do so would be let one’s feelings — strong as these might be — lead one into committing a gross injustice. This can easily be seen when we engage in a bit of “in-the-other-person’s shoes” thinking. Let’s begin with the concept of a transplant waiting list.

The waiting list for organ transplants will normally rank patients based on multiple criteria, for example HLA (Human Leukocyte Antigen) match, waiting time, expected improvement in length and quality of life, and so on. Now, based on the various criteria, it may just happen to be the case that Lillian is next in line, although that determination must be made by medically-trained hospital staff, not by a personal agreement between parents.

Besides the medical issues involved, think for a moment of all the opportunities for bias that would arise from relying on such personal preferences to determine who gets an organ. It’s not hard to imagine that it would be easier for Kaylee’s parents to forge a personal relationship in the hospital with parents of a similar culture, ethnicity, etc. Would they have struck up a relationship with Lillian’s parents if the latter didn’t happen to speak English? Should ability to speak English be a deciding factor in who gets a life-saving transplant?

Or as bad, what if leaving it to the parents’ determination opens up the possibility of profit becoming a factor? Isn’t it better, then, to leave such a decision to a more impersonal process? After all, if I haven’t power to decide who will get my organ, then I cannot demand payment (whether over or under the table).

I cannot speak to the exact nature of the relationship formed between the two sets of parents, so perhaps it is better to leave that issue aside. Let us instead assume that Lillian would not happen to be next on the list, based on whatever criteria are used. Perhaps there is someone else who has been on the list longer, or who would be an even better match. Such a hypothetical person is exactly the person whose shoes we should be putting ourselves into, so imagine that person is you. Would you not want to know why someone else got that heart and you did not? Would you be comforted by knowing it was because you were in the wrong place at the wrong time and didn’t have the opportunity to schmooze the donor’s parents personally? The media seem to present the case as one of compassion thwarted by an unfeeling bureaucracy. But from the point of view of the person who is first on the waiting list, it is a straightforward case of queue-jumping.

A Globe and Mail article (April 7, 2009) characterizes the case as “a medical and ethical debate over whether parents can decide who receives their children's organs.” This worries me. It seems to view organs as a form of property, where the only question is who gets to dispose of that property; once this is answered, it seems to be implied that the “property” can be given to whomever the “owner” (or in this case the “heir”) chooses. I can choose whom I will sell my house to: if I happen to dislike black people, they will not get to purchase my house. Do we want a similar regime in place for organs, the very “stuff of life”? Should whether you live or die be based on whether I like the look of your face, the colour of your skin, or the “cut of your jib”?

The parents are proxy decision makers, but that is a very different thing from being a property owner. They are more like trustees. They are to decide whether the organ is to be donated or buried. If they decide in favour of the former, the donation process, which is in place for very good reasons, should take over from there.

All of this aside, organ donation is probably the easiest, and at the same time most meaningful, charitable donation you can make. So please sign your donor card.

* * *

P. S. I now hear that the hospital has decided in favour of giving the heart to Lillian’s parents. If true, then I’m glad that Lillian will get a new shot at life. But I truly hope that the decision wasn’t made simply because the hospital bowed to media-generated pressure, or because they let personal feelings get in the way of their better judgment. Because if that’s the case, they should remember that somewhere there is another set of parents whose child will die of injustice.

P. P. S. Here is the latest on the story (as of noon, April 8, 2009): Kaylee was taken off of her respirator. However, she did not stop breathing as doctors had predicted. Therefore she is no longer considered a candidate organ donor. Lillian must continue her wait (although she is now at the top of the waiting list).

Moreover, Kaylee’s actual disorder has now been named. It is Joubert syndrome. Given its description (http://en.wikipedia.org/wiki/Joubert_syndrome), and in the absence of further details, it may have been hasty to work from the assumption that she was essentially brain dead. If she was not, then herein may lie the real ethical dilemma that the media were at first mentioning (they have now stopped referring to any such dilemma) — she may have been quite conscious and sentient at the time she was taken off the respirator. In any case, it is my opinion that the media have been in gross dereliction of duty throughout this entire episode.

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