Law and the Created Order
6/10/13 at 12:34 PM 0 Comments

Organ Donation Policy and the "Hard Cases"

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Many people have followed the heart-wrenching case of Sarah Murnaghan for the past several weeks and most of those people have been hoping and praying for a miracle. Sarah is the 10-year old little girl who has been very near death in a Philadelphia children’s hospital awaiting a lung transplant. According to the rules that govern organ transplantation, Sarah is two years shy of the birthday that would allow her to be considered for an adult pair of lungs, so she is forced to wait for a rare set of pediatric lungs while patients in less dire need receive lungs from adult donors. The media has taken up Sarah’s cause and even the United States House of Representatives has gotten involved. Secretary of Health and Human Services Kathleen Sebelius, the government official with the authority to suspend the rules that keep Sarah at a disadvantage in her wait for organs, appeared by a House panel last week. Rep. Lou Barletta of Pennsylvania urged the Secretary, "I'm begging you. ... She has three to five weeks to live. Please suspend the rules.” Sebelius acknowledged that his is an "incredibly agonizing situation”, but reiterated that she cannot suspend the rules in this case. The family, however, appealed to a federal court on Wednesday, June 3 and the court ordered Sebelius to lift the application of the rule in this case.
As a parent, I sympathize with the Murnaghan family. No parent can blame them for seeking to move heaven and earth to save their daughter. In fact, their selfless dedication to their daughter is refreshing in a world that seems to marginalize children and allows (and often encourages) parents to kill their unborn children who have the same disease that imperils Sarah’s life. That being said, however, this is a rare case in which I agree with Kathleen Sebelius. I am fully aware that Sebelius’s course of action means certain death for Sarah, which means that it is not a course that should be taken easily or lightly, but it is one that needs to be taken dispassionately and distantly.
If Sebelius had lifted the rule in this one emotionally charged case, what then does she do in the next emotionally charged case? One unique thing about this topic is that every decision made about organ donation is a life and death decision. When ten people need an organ, only one can receive it and the other nine cannot. The rules are in place to ensure that all ten of those candidates have the best chance of survival. It may be that because one rather than the other receives the organ, someone will die, but the rules must strike a balance and be based on factors that are very unsettling to consider.
Organs are allocated in a way that considers several factors. A patient who likely will die of cancer within six months will not be a viable candidate for a heart transplant when the heart that they have would otherwise keep them alive for two more years. This is not to say that that patient’s life is not valuable. Of course it is, but the person who can be given the same heart and be expected to live for fifteen more years is equally as valuable and the organ has the chance to give more life, more happiness, and do more good in the second patient rather than the first. These are the types of decisions that are hard, that wreak of utilitarian paternalism, but are none-the-less necessary. Dispassionate and rigid rules which are based on likely outcomes insulate these terribly agonizing decisions from being made on the basis on irrlevant factors.
Had Sebelius granted the waiver, she would invited a flood of appeals for similar treatment and at the point that a rule has so many exceptions, the rule simply ceases to exist. The federal court in this instance did no favors to the system and in the wake of the court’s ruling, other similar motions have been filed for other patients. As dispassionate as judges and bureaucrats try to be, they are still human and can be moved by emotionally charged stories. The best system is one that regularly reviews medical statistics and forms rules for organ donation based on the assumption that the maximum prolongation of life is an unambiguous good. It is easy to advocate for a suffering and dying ten year old girl, but how many would rush to defend the appeal of a war criminal or serial killer seeking a bureaucratic or judicial exemption to the rule? Rules based on available technology, likely outcomes, and respect for all life will keep any of us from ever being forced to do either.

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