There is great irony in the outcry over the refusal of Kathleen Sebelius to make an exception for Sarah Murnaghan, a 10-year old girl from Pennsylvania who is dying of cystic fibrosis for lack of a donor lung. In spite of a petition having gathered more than 300,000 signatures Kathleen Sebelius will not intervene to overrule or change the law, which currently segregates people by age on different organ donor lists, and is preventing Sarah from getting a donor lung. If not overruled, this refusal may result in her death.
The irony is that Sebelius is playing the role of Bad Guy in this drama, but she is just doing her job. She is following the law. The law is one that the nation demanded in 1968 with the Uniform Anatomical Gift Act and 1984 with the National Organ Transplant Act. I don’t have to know much about these laws to know what they are – a bunch of fixed rules administered by a bureaucracy. Sebeliusis following those rules, and incurring the wrath of the public for her efforts.
Having created laws that set up a legal monopoly on organ donations administered by a federal bureaucracy, we have two choices.
- Follow the rules, preserve the “system” of lists and priorities, and probably let Sarah die.
- Let a bureaucrat override the rules and save Sarah. In so doing give that official the arbitrary power of life or death over organ recipients.
On the one hand, you have a “system” that is at least perceived as fair. It may be arbitrary, inefficient, even brutal, but it is the law, and is defensible.
On the other hand, giving any official the ability to waive the law, would be to set up a death panel of one.
Neither of these is pretty.
That’s the trouble with rules. They always sound better in the abstract than in the flesh. We want things to be “fair”, but when those rules are written down and applied, we want to ignore them if anyone is hurt.
Before the law intervened, the organ donation process was haphazard and disorganized, but private flexible systems of collection and re-distribution were in their infancy, and working hard to improve. Those systems were inadequate, arbitrary law is just as bad, if not worse. inadequate and voluntary has room for compassion because the power of coercion and monopoly is absent. Law has no room for compassion because ignoring the law is not compassion, it is corruption.
In Sarah’s case, a judge as already commanded that Sarah be put on the desired list. The exception having been noted, another young patient has also sued for a similar exception. I can hear my mother’s voice – “What if everyone did that…?” Expect a few more “exceptions” to be demanded. This is probably not over.
Laws and bureaucracies are very poor tools to mete out life and death. This is but a taste of what the PPACA will bring us in 2014.
