Rationing Health Care in the Neonatal Intensive Care Unit

“This book is about moral tragedy. . . Such tragedy is the inevitable result of two universal aspects of the human condition.

1. We have virtually unlimited health care needs.
2. We have limited health care resources.”

So begins my friend Charlie Camosy’s important new book Too Expensive to Treat: Finitude, Tragedy, and the Neonatal ICU. Now, in most cases, I would not dedicate a blog post to a utilitarian and proportionist unless I was going to argue against him. Charlie happens to be both. But he also happens to be an extraordinary moral theologian who defies stereotypes and ideological “buzz words” to really get to the heart of a moral issue. Since these are also the values of everydaythomist and since Charlie is the first utilitarian this everydaythomist has liked so much, his new book deserves a laudatory blog post (check out another review that mentions these virtues at National Catholic Reporter).

Take the following quote, also from the introduction.

[T]he unjust health care system of the United States has once again sparked a heated national debate about precisely what reforms should take place to make it more just. Many of those against expanding our significant public option for health insurance cry out against the “rationing” that would be done. Even the Obama administration and others pushing for precisely this kind of expansion claim that ‘no one is talking about rationing.’ But what neither side seems to realize, or at least is willing to admit, is that we are already rationing and we will never not be rationing.

Rather than avoid “health care rationing” as a bad word, Charlie forsakes the arguments of both sides and gets to what is really going on: We are already rationing, because we have to. Avoiding using the term won’t change the fact that we don’t have enough for everybody to get what they want.

What does this have to do with the NICU? Neonatal intensive care is some of the most expensive in pediatrics and in the healthcare system in general (estimated at around 21 billion dollars). It is routine to spend hundreds of thousands of dollars, even millions, to save the life of a newborn “at all costs.” Camosy gives two powerful narrative examples to illustrate the complexity of the argument he intends to make, one of Patrick, a tiny little preemie who beat all odds at survival and went home after only three months in the NICU, and Jerry, a Tennessee resident with a muscle spasm in his heart who can no longer afford the necessary treatment after being dropped from TennCare (Medicaid):

Can we justify spending $30 million on a single NICU patient while millions like Jerry need life-sustaining treatment—and for pennies on the dollar in comparison? If we say no, we are putting a price on life. We are not saying that Jerry is worth more than Patrick. We are not even saying that such monies, to be justly distributed, need to go somewhere other than the healthcare of babies. We are saying rather that just distribution of resources requires us to face difficult choices about how to ration care.

Part of Camosy’s argument relies on what is called the “social quality of life model” which looks at the just distribution of resources as having primary significance in determining the overall balance of burdens and benefits in questions of treatment. Most who argue for the social quality of life model also argue that infants do not possess a full moral status as a human being and as such, should be denied medical treatment based on broad, and more important social factors. Charlie again defies expectations and argues for both a strong social quality of life model and the full moral status of the infant:

Though all human infants have full moral status, if one accepts Catholic social teaching’s principles of theological anthropology, universal destination of goods, and a preferential option for the poor, broad social factors have more than secondary importance when it comes to treatment of imperiled newborns.

The strong social quality of life model espoused by Camosy, especially as viewed through the light of Catholic social teaching reveals that the “culture of overtreatment” in the NICU is in desperate need of reform. For imperiled newborns, doctors and parents often want to take “every measure possible to preserve the life of incredibly tiny infants, even when the chance of survival is very low, especially without significant handicap. Camosy argues that

“what is in a newborn’s best interest cannot be isolated from the duty of all to live in right relationship with the rest of humanity in conformity with the good of all. Part of what is means to live in right relationship is to use only a proportionate amount of resources available in one’s community. And given the dramatic numbers. . . it seems that some treatment of imperiled newborns is disproportionate with the common good. Such treatment, in light of the finitude of our resources (and of our human condition more generally), out to be forgone.”

Concretely, Camosy thinks a “triage” scale should be established for imperiled newborns ranging from “must treat” to “must not treat (given palliative care)” based on (1) survivability and length of life predictors and (2) short- and long-term costs of treatment. This includes making illegal the treatment (outside of palliative care) for the following terminal ailments which cannot possible benefit from treatment:

trisomy 13, 15, or 18
Large enecephaloceles
Inoperable heart anomalies
Severe clotting disorders
Birth without pulmonary veins
Potter’s syndrome/renal agenesis
Multicystic/dysplastic kidneys
Plycystic kidney disease

Although Camosy supports legal reform to keep any aggressive medical treatment from such infants, he is also adamantly opposed to the idea that this constitutes “abandoning the child.” He supports palliative care and any medical procedures (induced early birth, e.g.) that will allow a parent to bond with their child before they let her go.

Camosy must be commended for his courageous willingness to take on an issue that both sides (conservative and liberal) have avoided. Camosy is right to point out the problems with the culture of overtreatment in the NICU, though this culture extends far beyond treatment of imperiled newborns. Overtreatment is a problem in many segments of the health care industry, and Camosy could do a better job pointing this out in order to avoid criticism from the right suggesting that he is unfairly focusing on infants rather than the over-cautious, the terminally ill, or the elderly. For more on overtreatment, check out the book by Shannon Brownlee.

Another issue that goes largely unaddressed (for very good reasons since he is making largely philosophical and not explicitly theological arguments) in Camosy’s book is the fear of death that feeds this culture of overtreatment. Theologically, this fear of death is challenged in a very fine book by Terence Nichols: Death and the Afterlife: A Theological Introduction. However, the point is that Camosy draws on Catholic Social Teaching without drawing on other elements from the broader Catholic tradition (i.e. its teachings on the afterlife) which may make his overall argument a little easier to swallow. Catholics who believe they have to take “every step possible” to save the life of their premature newborn (or elderly parent) often misunderstand the Church’s teachings on end-of-life care precisely because they have not been taught or fail to appreciate the corresponding teaching on eternal life.

Finally, Camosy gives a nod to the role for virtue ethics in this debate in his discussion of prudent clinical and public policy decisions, but one need not be a utilitarian to argue against a culture of overtreatment in the NICU or for a more just distribution of health care resources. A virtue ethicist may put a greater onus on doctors to make prudent, just, and courageous decisions in the NICU or a parent to see true courage as the ability to let their premature baby die peacefully rather than taking extraordinary and largely futile life-extending measures, but virtue ethicists can also appreciate the value of certain legal measures in forming virtuous decision makers in the NICU. This is just a minor quibble. Secretly, I think Camosy is a virtue ethicist at heart (which is why he appeals to the “common good” in his teleological schema rather than the “greatest good” as other utilitarians do). Ultimately, the ideal that Camosy lays out for the just distribution of health care resources will require agents whose characters have been habituated to promote such goals consistently, reliably, and with pleasure. For Camosy, the emphasis is largely on making rational and logical decisions, but a virtue ethics contribution could attend to the powerful way in which emotions prevent or facilitate rational action in these matters.

This is a very fine book, challenging for anybody to read, and worthwhile for everybody. Camosy challenges us to look at a complex and difficult moral dilemma without the comfort of our ideological camps that allow us to be either “pro-life” or “pro-justice.” And speaking of justice, the book is only $12.24 and available in paperback.


1 comment so far

  1. nohiddenmagenta on

    FYI, I don’t think I’m a utilitarian or a virtue ethicist: I’m a teleologist who incorporates both into his ethical theory. Like your boy whose name is the title of your blog. 🙂

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