Thursday, July 20, 2006

A gonzo whopper of a moral dilemma

DISCLAIMER: There is almost nothing specific to Woody in this post. It collects some of my imperfect thinking on the ethical issues relating to Woody and other micropreemies, and is eminently skippable.

Some brave people have suggested to Maggie and I that our experience with Woody must have changed our thinking on issues involving fetuses and the law-- i.e., the supposition that we have (not to jinx ourselves-- let's say "so far") saved a 23 week premature baby must have made us rabid pro-lifers. This is not true, although I would definitely be lying if I said that our experience with the kid has not complicated our thinking on both beginning and end of life issues. As far as I think about the legal/ethical issues, there are a few things our experience has illuminated. First, the ethics of caring for high-risk patients is a morally troubling area, and it's true that being close to the issues makes one pay a lot closer attention than before. Second, the most complicated moral and ethical dilemmas that I see involve choice of care, where decisions to benefit one (or more!) person(s) can negatively impact others. Finally, the primary mistake that I think the most sanctimonious commentators on such issues make is the assumption that all of the lives at issue have a simple and binary value, when life is necessarily a lot more complicated than that.

A) I will freely admit that prior to our experience dealing with Woody, I was more comfortable thinking about the issues of dealing with high-risk patients and of even witholding care. For example, a few years ago a group of doctors in Britain began calling for a bright-line deadline of 24 or 25 weeks before trying to save a premature infant. While this seems morally questionable, let me be clear that most hospitals have some kind of guideline for when it's too early to try to save a patient; our hospital has a general rule that babies born before 23 weeks are not saved, and Woody only made that by two days (and if Maggie hadn't received excellent care in the week prior, he probably wouldn't have even made it that far). The risks for the preemies themselves are huge; even now the morbidity rate of such babies is very high, and the disability rate of the survivors is even higher. In Britain, the issues are even more stark, because with the national health care provided by the state, there are always de facto health care rationing issues present in any care decisions. The million bucks spent on a Woody, for example, would go a long way to saving a number of later preemies.

Think about that last sentence, though. There's a reason we are uncomfortable with a utilitarian approach when it comes to health care, because our society has a moral appreciation for the individual that does not generally excuse the sacrifice of one even if it saves many (the now-classic anti-utilitarian strawfigure argument of killing a healthy person to save many waiting for organ transplants comes to mind). Being the father of such an economically inconvenient individual definitely strengthens my antipathy to such a cold-blooded approach to human life. And consider, also, the implications for other classes of patients. My grandmother survived colon cancer ten years ago, at no inconsiderable expense, of which she was only given a 10% or so chance of survival. Should we have applied the same cost considerations to her care? What of Mimi Sherri, who has beaten back her own odd type of cancer due to a very expensive drug that the insurance companies have not always wanted to pay for? In other words, there's a certain logic in making pronouncements about which babies to save that evaporates when it's your kid, especially when he is, individually, a much better candidate for care than the mean.

B) Of course, our time in the hospital began with a real-life ethical dilemma that ought to be, if it is not, a classic example in medical ethics classes. Maggie entered the hospital with painful, debilitating, and life-threatening symptoms relating to HELLP syndrome and preeclampsia. Neither of these conditions has any real treatment absent 'delivery', and when Woody was born it was because her liver and platelet tests put her in the category of 'will soon die.' Five days earlier, when she was admitted to the hospital, her test results were approaching these levels, yet if she was immediately delivered (two contexts to that verb, I assure you) of the child, there was no chance to save him. In that situation, you have an existing life that is competing with a nascent life; to attempt to save one is to risk the other. How do you weigh these competing interests?

I certainly didn't want Woody to be sacrificed to save Maggie, but I recognized then as I do now that the doctors facing her had a really hard line to walk when it came to her care. She was given drugs to try to stabilize her blood pressure and to keep her liver and platelets in line, but we were warned that the prognosis of continuing in that steady-state was not particularly promising, and so we were aware of the risks. The way her care was dealt with in the OR also reflected these competing concerns. There was a team that was taking care of her, and then the NICU team stood by to handle the baby. At the point that her life was in immediate danger (bearing in mind that HELLP has a morbidity rate of up to 25%), there really could be no other choice but to do the c-section.

C) The key to understanding how this decision was made, and why I think the assumption of those that believe we ought to now be pro-lifers is misguided, is that while there was already moral value in Woody's status as a gestating fetus, it was not necessarily equivalent to Maggie's, as a real life human. In other words, if you treated Woody's life as exactly equal to Maggie's life, then the doctors should have waited until the last possible second to deliver, even though it placed her life at more risk. I recognize that this, again, raises some morally questionable issues, but it illuminates my thoughts about such issues as stem cell research. To think of surplus fertility clinic embryos as the same binary value as actual adult humans seems misguided, because while the alluded utilitarian use of an adult human does not compute on our moral scale, the embryos at question are not actual humans yet, and even in the best possible circumstance (i.e., all of them being implanted in willing mother's wombs) only 25% of them even could become actual humans. Such embryos, like gestating fetuses, have moral value, but that value as potential humans does not reach the value as actual humans (from which follows my belief that scientific research on embryos that will never become actual humans is justified, on the grounds that the rest of humanity could benefit greatly from it).

Which of course means that beginning-of-life issues are necessarily more complicated than the care decisions that have faced doctors caring for people like my grandmother. Which means that while a blanket rule on saving early preemies might be morally questionable, but it does not follow that it is morally wrong to allow a preemie that has almost no chance of survival to die. Which means that despite my personal closeness to such issues, I see the arguments on both sides with sympathy, and means that I can't be a moral absolutist zealot, no matter how much I love my kid. It's a hard issue, and there are no easy answers. I am happy, though, for the fact that the science has evolved to the point to allow us these kind of moral dilemmas. It would be a lot easier in an ethical sense if more of us just died, but why would that be any better?


At 1:48 PM, Anonymous Grammie said...

This entry is a thoughtful, well-supported, and nuanced analysis of a thorny(and now very personal)issue. I give you an A+.

At 3:21 PM, Blogger Bill Hooker said...

I was all set for another cage match (remember the vegetarianism one?), but dammit I agree with you. I'm going to bookmark this entry -- the personal element plus your careful thinking make a very powerful spotlight to shine on a very murky set of questions.

Although I don't think you are using the word "morbidity" correctly.

At 9:51 PM, Anonymous Dad/Sherri said...

Very nicely done - you've stated the various issues in a way that most thinking people can appreciate (even if some might not agree.) We're with you all in these major/minor miracles...

At 12:40 PM, Blogger Nathan said...

Bill: you are correct (I was referring to the mortality rate, not the morbidity) about the word choice, but I plead the excuse that I was misled by a confusing sentence in the article I cited, specifically this sentence:

Early diagnosis is critical because the morbidity and mortality rates associated with the syndrome have been reported to be as high as 25 percent.


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