The organ transplant waiting list is a roster of names more than 118,000 long – and that’s just today’s numbers. Updated every minute by the Organ Procurement and Transplantation Network (OPTN), the candidates come and go in real time, some receiving life-saving organs from donors, and others leaving the list because their bodies gave out before matching donors became available. The decision making process is often scrutinized, and in a case involving 10-year-old Sarah Murnaghan, rules have been the subject of a potential watershed court ruling. Should the courts involve themselves in the business of deciding who receives what organs and when? Isn’t this what lawmakers have railed against for years? The water here is murky, and the answers may ultimately enrage both sides.

One thing is clear. Any delay in streamlining the organ donation system in our country may cost those stranded on the waiting list their lives. In the time it took me to finish the opening paragraph for this article, 30 dropped off the OPTN registry. Tick tock.

There’s a significant shortage of viable organs for donation in the United States. Making donation an ‘opt out’ program, instead of an ‘opt in’ one, could go a long way to decreasing the shortfall. Photo Credit: Flickr (Creative Commons license).

Rules for a Reason: The Organ Allocation System

The current waiting list of those in need of an organ transplant is actually two separate categories. One side is children under 12 years old, and the other is everyone else. Individual placement on the list depends on variety of factors, including the patient’s overall medical condition, degree of organ match, and time spent on the list. If the chosen candidate passes on the organ, the next suitable person gets a shot, and so until the transplant team locates a recipient.

From January 2013 through April of the same year, the OPTN reported roughly 4,500 organ donations resulting in 9,189 transplants. For those doing the math at home, that still leaves more than 100,000 people still waiting. The system does not base priority on age, race, religion, income, or social status. Everyone on the list is equal – sort of.

When the OPTN split the central organ donation registry into two separate groups several years ago, the goal was to ensure fairness across the entire system. Under the old registry rules, donors of all ages appeared on the same list, which often meant sicker adults could receive undersized child organs because they were higher in priority. These smaller organs had little chance of performing well inside larger adult bodies; meanwhile adult organs simply don’t fit well in the smaller frames of child recipients. Surgical procedures required to “shape” organs to accommodate the chest cavities of children are often just as complex as the transplants themselves. According to statements made to USA Today, what children who end up with donated adult lungs actually get is just a piece of the whole organ, which is unlikely to thrive.

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Cystic fibrosis affects multiple vital organs in the body. Photo Credit: National Heart Lung and Blood Institute, Wikimedia Commons (public domain).

The separate lists guaranteed organs donated by children less than 12 years old went to children of the same age group waiting on the list. The system has its benefits, even though it denies children less than 12 years old access to adult organs until after doctors considered adults and adolescents on the transplant list. Seems fair on the surface – adults needing transplants get priority for adult-sized organs, and children on the list receive the same primacy for organs of their age group. Of course, we’re not talking about shoe sizes here. We’re dealing with life and death decisions, and in those instances, fair and unfair often depend on what sides of the line patients fall on.

30,000 U.S. Children and Adults have Cystic Fibrosis

Sarah Murnaghan has end-stage cystic fibrosis (CF), a genetic disorder that causes scarring and cyst formation within the pancreas, frequent lung infections and thick, viscous secretions that damage lung function over time. Lung transplantation is usually the last treatment option for those living with CF.

There is no known cure for the disorder, though doctors have greatly improved treatment methods since the medical community first recognized it in the 1930s. The main focus is reducing the rate of lung infections to preserve healthy tissue for as long as possible. Daily regimens to loosen sputum in the lungs and allow patients to cough it up are grueling, and many take antibiotics to resist infections like you or I might take a routine aspirin.

The average lifespan for those living with cystic fibrosis that makes it to adulthood is about 37 years, according to the U.S. National Library of Medicine. At an age where she should be about to start middle school, Sarah has already endured multiple surgeries, and stands to face more procedures should her new lungs, one of which has reportedly developed pneumonia, hold up for long enough. Exacerbating her grave situation, and that of thousands more like her, is the tragic shortage of available organs, and the ethical dilemmas facing a system that now has suffered multiple court rulings against its fairness. As federal judges become more involved in the process of making medical decisions, where does that leave doctors?

It’s a Rough Time to be a Transplant Surgeon

A negligent doctor or other healthcare professional that causes harm to their patients is breaching their ethical and professional duties. Our lawyers hear stories from potential clients who believe they’re the victims of malpractice every day. In reality, most have received quality care that just hasn’t returned the results they’d hoped. Not every treatment method works 100 percent of the time, and many turn to lawsuits in their grief as a means of finding a sense of control and justice over the situation. Carelessness does indeed happen, and doctors who are reckless at the expense of their patients deserve punishment, but those physicians should at least be the ones behind the wheel of their negligence.

How do we begin to sort through the potential liability of medical doctors performing risky, essentially experimental procedures, on a federal judge’s orders?

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Surgeons make poor judges, which is why they don’t weigh in on court decisions. Does it make sense then to have judges making medical choices that remove medicine from the equation? Photo Credit: Flickr (Creative Commons license).

A 2005 University of Pennsylvania study cited by numerous media outlets, including USA Today, states that 12 percent of lung transplant patients suffered primary graft failure, meaning their newly-implanted lung(s) began to fail almost immediately after surgery. This reportedly occurred in Sarah’s case, which is why her doctors acquired another set of lungs, altered them to fit her smaller size, and performed a second transplant procedure to preserve her life. Let’s be blunt: this girl deserves every opportunity to live as full and healthy a life as possible. But, so does everyone else. That’s why there was a system in place to decide who gets donated organs first; one that prized the health status of patients and match percentages over emotional considerations. It may seem cold, but that’s what we need.

Furthermore, legal precedent set by federal Judge Michael Baylson in Sarah’s case, and a second case involving an 11-year-old boy with similarly late-stage CF, may have tipped the balance in favor of legislators over medical doctors, and that can’t be good for patients in the long run.

Nightmare Scenario: Judges Play Pretend Doctors

Attorneys use judge rulings and case law all the time to back up their arguments in court. The philosophy is simple: if one court ruled a certain way on an issue, we use that opinion to back up our interpretations of the matter at hand. Judges are more likely to rule in our favor if we can cite legal precedent for our stance on a given issue, which makes Baylson’s rulings problematic for adults on the national transplant registry.

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This doesn’t appear like a suitable environment to make medical judgment calls, but we could be headed to the U.S. Supreme Court sooner than later to decide transplant list regulations. Photo Credit: Flickr (Creative Commons license).

Imagine the next time a child (or an adult for that matter) is in need of an organ transplant, but can’t get one due to the OPTN’s rules regarding donor priority? Hiring an attorney to force the board to change its mind through a lawsuit may be the new way to guarantee life-saving treatment. The given family’s legal team cites Baylson’s previous decision, and it’s a green light to leapfrogging priority. The snowballing effect of these rulings could cause the system to stagnate and ultimately lead to its collapse. How does that serve the public or the hundreds of thousands waiting for the only help left to them?

We want fairness – not judicial oversight of purely medical matters. Healthcare professionals in high levels of education and administration agree that Sarah’s transplants did not take organs from someone else. The organs she received, reportedly, were of low quality that others would have passed on in the hopes of getting healthier tissue. Sarah and her family could not afford to wait, and there’s no arguing that any parent would’ve made different choices to save the lives of their own children.

As the OPTN reviews its policies for approving transplant candidates, it’s my hope that they consider the scenario that could very well play out in our courts in the coming months and years: a slew of lawsuits that grinds the transplant system in our country to a steaming halt while judges decide who is the most worthy of receiving organs. No one wins that battle, and in the end, families will lose those dear to them inch by inch.