MD vs. JD: Doctors and Judges in Medical Decisions—Who Should Have the Last Say?
By: Susy Lam
They say, “Rules are meant to be broken.” This saying was brought to light through a recent matter in which rules were called into question: Sarah Murnaghan’s court case publicized controversial policies in organ donation in the United States, calling into question the fairness of organ donation policies where young children are involved. The big question is: should expert medical opinion prevail, or should the law?
Sarah Murnaghan was a 10-year old girl, plagued by cystic fibrosis (CF)—a chronic, eventually fatal disease. CF is a genetic disorder associated with dysfunctional chloride channels that leads to mucus accumulation in the lungs. Sarah eventually went into respiratory failure and urgently required a double lung transplant. However, paediatric lungs were in shortage at the time, and Sarah fell short of the age requirement set by the Organ Procurement and Transplantation Network (OPTN)—she had to be at least 12 years old to be prioritized for a pair of adult lungs. Waiting for a rare paediatric lung donation, and being at the bottom of the adult lung transplant list, minimized Sarah’s hopes for surviving this deadly disease.
The algorithm used to prioritize adult patients for lung transplants is the Lung Allocation Score (LAS). Lung transplant candidates older than 12 are assigned a LAS based on a complex mathematical formula, which takes into consideration the patient’s age and size. For transplant patients younger than 12—of which there are 55 nationally, compared with about 1 800 adults—the LAS is not used. Instead, patients are broken into “Priority 1” and “Priority 2”, known as the Under 12 Rule. Paediatric patients are not prioritized using the LAS algorithm because there is no available evidence that demonstrates that a similar allocation system is effective for this age group. It is this difference in allocation practices that has been deemed “discriminatory.”
Eventually, the Murnaghans initiated a nation-wide campaign, claiming that this rule was discriminatory against their daughter, and they won a temporary restraining order from the courts. A restraining order is a form of court order that requires a party to do, or to refrain from doing, certain acts. This meant that the OPTN’s Under 12 Rule would temporarily have no effect on Sarah, and she would qualify to be considered for adult lungs. The ruling concluded that the Under 12 Rule “discriminates against children and serves no purpose, is arbitrary, capricious, and an abuse of discretion.” The OPTN was required to enter a fake birthday for Sarah under the waitlist for adult lungs, tricking the system into thinking she was 12 years old. This raised Sarah to the top of the recipient list. Since Sarah’s case, 11 additional paediatric patients have been allowed to override the system to enlist for adult lung transplants in a similar fashion.
Three pertinent questions arise from this issue: (1) Is it fair that children under 12 years of age be bumped up on the list above hundreds of thousands of other patients in desperate need of a lung transplant? (2) Is it safe that a child receives an adult lung, from a medical perspective? (3) Should medical opinion prevail, or should the judicial officials be able to trump doctors to overrule seemingly discriminatory decisions?
If a decision is backed up by relevant medical evidence, then it should not be deemed discriminatory. Several experts in medicine, law, and ethics support the Under 12 policy, stating that overruling the Under 12 policy unfairly brought Sarah and other young patients to the top of the list, while other older recipients had to wait longer.
While parental concern for a child’s health and wellbeing is often the motivator for pursuing legal action in cases such as these, medical complications can be overlooked when decisions are not made objectively. Dr. Cronin, a transplant surgeon, states that adult organs are generally not suitable for children, for a combination of reasons. Dr. Art Caplan, of the New York University Langone Medical Center, echoes this opinion. It may be easier to find a pair of adult vs. paediatric lungs to transplant to children, but is very difficult to get any good lung donor due to factors including smoking, asthma, air pollution, and the immense fragility of lungs. In fact, Sarah Murnaghan’s body rejected the first pair of lungs she received, putting the young girl in a dangerous medical state. From an ethical standpoint, if an organ is continually rejected and the patient’s condition worsens, the patient may end up unnecessarily enduring prolonged suffering. In essence, allowing the courts to make decisions that go against medical advisement might ultimately harm paediatric patients in the long-term, due to the risks of transplant rejection and the challenge of finding suitable adult organs for children.
If allowing patients to override the Under 12 Rule can potentially be harmful, should judges be allowed to supersede medical decisions? Of course, it is understandable that out of purely good intentions, parents will do everything possible to fight for what they believe is fair and right for their child. Overturning a seemingly unjust policy would indeed comfort parents, helping them to believe that their child will survive and be well. However, perhaps it is equally important to consider the rationale behind creating policies and rules in science and medicine in the first place. Policies were put into place in order to render the system more efficient, fair, and safe. If the policy seems to be unfair or is lacking in some way, it is not always in the patient’s best interest to ask a judge to overrule a policy-based medical decision. If rules can be bent once, they most certainly can be bent again. Ultimately, what could end up happening is that doctors are unable to treat patients in objective and unbiased ways because of the perceived “unfairness” of the policies by which their decisions are made, potentially resulting in detrimental patient outcomes.
The focus should not be on rule-bending, but rather on revamping the policies as a first step to take in order to improve the OPTN’s donor allocation strategies. OPTN is currently reviewing its policies, so perhaps a better strategy will soon be developed to better allocate organs such that donor-recipient matches are maximized, to augment patient survival, and minimize medical risk. Judges should not always have the final say in medical decisions for patients. Through these court-based decisions, the patient and their family may indeed gain a false sense of comfort, but the patient may suffer in the long-term. In the end, medical expertise should win—marginally.