In the past few days, some members of Congress (mostly Republicans) have been pressing HHS secretary Kathleen Sebelius to intervene on behalf of a little girl named Sarah Murnaghan, who is suffering from cystic fibrosis and awaiting a lung transplant at a Pennsylvania hospital. Because she is under 12 years old (she is 10), she is on the children’s waiting list, and so is not eligible for adult donor lungs — which become available much more frequently than those of children. At a hearing yesterday and in various venues today, Sebelius has been pressed to use her (vaguely defined) discretion to bend the rules of the Organ Procurement and Transplantation Network and get Murnaghan on the adult list, where she would have a better chance of getting a lung before it’s too late. Representative Lou Barletta of Pennsylvania yesterday pushed Sebelius directly, telling her, “I’m begging you, Sarah has three to five weeks to live. Time is running out.”
It’s a terribly tragic case, and it’s impossible to contemplate the Murnaghan family’s situation without wanting to move heaven and earth to help. But what Sebelius is being asked to do would be a gross abuse of her authority, and she is right to resist it. The attempt by some to paint her as the villain here, and to tie her unwillingness to bend the rules to the logic of Obamacare or otherwise use this situation to score political points, is ugly and absurd.
In fact, the logic of this situation works roughly the other way. The members pressing this case are asking a politically appointed official to take directly upon herself the role of making life-or-death decisions in individual cases. In an unavoidably zero-sum system like organ transplantation — where one person’s receiving an organ means another does not — there is basically no avoiding some utilitarian calculus, and such a calculus would best be based on an assessment of need together with an assessment of the likelihood of a successful transplantation with beneficial effects. The larger health-care system does not have to work in such a universal zero-sum way most of the time, and part of the opposition to Obamacare and its further consolidation of financing (and therefore allocation of resources) in federal hands is that it will make our health-care system more of a single zero-sum system and involve the government exercising more direct rationing power, rather than leaving decisions about how to allocate scarce resources closer to the ground. Centralized rationing (and even regionalized rationing, as is usually done with organ transplantation) in our huge country will inevitably be basically utilitarian. In the case of an organ waiting list, there is no avoiding this zero-sum problem, and moving the decision from a relatively objective system of allocation to the discretion of a cabinet secretary is a very bad idea. On what grounds is Sebelius supposed to do this? Because this poor girl’s parents figured out how to get the attention of reporters and politicians? Are people with less-savvy relatives supposed to be punished, and perhaps left to die, as a result?
No one can blame Murnaghan’s parents for doing absolutely everything they possibly can to help her. Surely any of us would do the same. But should that mean that those of us better positioned to make our case should push those who aren’t to the back?
Children are on a separate list for lung transplants because transplants of adult lungs to children don’t have a great track record. If there is new evidence that should cause a rethinking of that separation (as has happened with kidney and liver transplants) then the Organ Procurement and Transplantation Network, which basically functions as a federal contractor, should review its procedures. Sebelius in fact asked them for such a review, because of this case, late last month. If they end up doing it, it would have to happen in an orderly and careful way and would take some time — the children’s waiting list is not prioritized by medical need but more or less on a first-come-first-serve basis, and if children were integrated into the adult system there would have to be some criteria for comparing them to people already in that system.
But having the secretary herself use her discretion to intervene to prefer the life of one person over another, even if she did have the authority to do it, would be inapprpriate. If an intervention is to happen, at least let it come through the courts, for the sake of our system of government.
Kathleen Sebelius has done a whole lot of things worth complaining about in her term at HHS, but in this instance I think she is right, and members of Congress should think very carefully about how they are using the power they have been entrusted with in pushing her to intervene.