Sarah Murnaghan recently made headlines as a ten-year-old suffering from terminal cystic fibrosis and most likely not going to receive a life saving lung transplant.
Being less than 12 years old, she was only eligible to receive a transplant from a child donor – which is rare – and excluded from the adult transplant waiting list. In all likelihood, she would die waiting for appropriately available lungs. After a long struggle, federal judge Michael Baylson issued an injunction against the Organ Procurement and Transplantation Network [OPTN] to place Sarah on the adult list. Less than a week later she received an adult transplant, but unfortunately it failed almost immediately. She was maintained for a short while on life support until quickly receiving a second transplant; she is now recuperating and doing well.
Media coverage and commentary was extensive, quoting pundits visibly angry with the situation. Some were upset with the OPTN’s two tiered waiting list as discriminating against children, while others were upset at the judge’s involvement, since his law background does not offer him standing in this medical decision.
Considering the severe shortage of available organs, how should we select the most eligible recipient? Must we offer it to the sickest patient, who may not survive until the next organ becomes available? Or perhaps prioritize a patient who stands to gain the most time if given the transplant? Taking into account the complexity of the surgery and intensive post-op care, do we factor in the patient’s probability of survival?
These complex questions don’t have simple solutions; reasonable people will arrive at reasonably different conclusions.
The reason is because we aren’t dealing with medical facts. There isn’t any physiological principle, blood test, or double blind study that will solve these questions.
Medicine cannot help because allocating organs demands that we make value judgments and moral determinations in deciding who is more deserving of scarce resources. These dilemmas are not solvable with figures, numbers, or scientific facts. They require an ethical analysis – one that is deeply informed by facts – but at the most fundamental level, an analysis of ethics.
To proceed, we must decide on ethical principles that will guide our choices. The OPTN’s chosen principle prioritizes the sickest patients – those who have the least amount of time to live. That said, they will only include on the list patients who stand a reasonable chance of surviving surgery and some specified time thereafter.
As a matter of ethical principles, Halakhah may provide an alternative perspective.
Whenever we offer an organ to somebody on the list, we perform the mitzvah of pikuah nefesh (saving lives) no matter who receives the organ. Since we can’t save everybody, prioritizing patients requires selecting among mutually exclusive instances of this mitzvah. One approach to choosing between two instances of the same mitzvah is to select the option that allows for the most ideal mitzvah performance. When it comes to pikuah nefesh, extending life as much as possible is considered a hiddur – a more ideal performance. Therefore, when faced with multiple patients, we should opt for the greatest hiddur mitzvah and prioritize those who have the most time to gain from the transplant.
Regardless of the principles chosen, a second stage requires translating them into medical parameters. For the OPTN’s model, how do we measure how sick a patient really is and how do we assess ability to survive? To answer these difficult questions, OPTN convenes interdisciplinary groups of physicians, lawyers, philosophers, and lay leaders to come to a shared understanding and determination of these criteria.
When translating ethical principles into physiological functions, it makes sense to differentiate between children and adults. Survivability in children is very different than for adults for many reasons, including most simply, body size. Adult organs do not fit into children’s bodies and using only a portion of an organ significantly complicates the necessary surgery.
The principles guiding these decisions are the same as for adults, it is the physiological facts that are different.
Sarah’s parents convinced Judge Baylson that this difference unfairly discriminates against children by relegating them to a separate list. He agreed, issued the injunction, and demanded that OPTN reassess its position.
Whatever we may think of his decision, it is well within a judge’s purview to intervene. Our legal system is meant to reflect a national vision of morals and ethics and it is the judicial branch’s responsibility to see that through. The judge argued that the survival threshold is simply too high if it deems children ineligible for adult organs. It is an ethical argument, not a medical claim, and therefore, well within his mandate.
In doing so however, Baylson destroyed the entire system. The rank list became meaningless, since any potential recipient could appeal to a judge to change their position on the list. In fact, the very next day another child appealed to Baylson, who ordered the OPTN to also include her on the adult list.
Responding to this challenge, the OPTN convened, debated, and reaffirmed their position of listing children separately from adults. The fact is that children survive much better when receiving organs from children donors. OPTN argued that the probability of meaningful survival when receiving adult organs is simply too low to pass the threshold compared to an adult who could have received that same organ.
While the judge’s decision to sacrifice the integrity of the transplant enterprise rightly deserves criticism, it is important that we simultaneously reaffirm his role in the process. We need not agree with his ethical analysis and we may – and perhaps should – offer our own approach and model. But in a world where many medical ethics decisions are often viewed as another branch of medicine to be decided by medical professionals alone, it is important that we remind ourselves that these are questions of values and morals, in which even medical laypeople do and should have an equal voice.