Outside the Beltway

Organ Transplants, Medical Ethics, And Children

Getting the courts involved in the organ transplant issue could end up being a huge mistake.

Doug Mataconis · Thursday, June 13, 2013 · 14 comments

Yesterday at a hospital in Philadelphia, a 10 year old girl named Sarah Murnaghan who suffers from Cystic Fibrosis underwent a lung transplant after a compatible donor was found. According to reports, Sarah appears to be doing well after the surgery, although her condition will be touch-and-go for quite some time both because of her underlying illness and because of the fact that she just received a transplant. What makes her case unusual, or at least noteworthy. is that it comes after a court battle and the decision of the Secretary of Health and Human Services to suspend for just her case a national rule that prevents children under twelve from being put on the list for adult organ transplants. Since she was under 12, Sarah was on the list for donations of children’s organs however viable donor lungs from this list are rare and may not have come in time for her. So,her parents, supported by her doctors, filed a lawsuit to try to void the rule that kept her off the adult list. While there is apparently still some conflict among doctors over whether its wise to use adult organs on children under 12, he ended up ruling in Sarah’s favor and the HHS issued an exception to the rule that allowed her to be placed on the list. Sarah’s survival is still an open question, both because of her Cystic Fibrosis and because there’s still a chance that her body will reject the organ. However, it is eminently clear that this transplant has given her time that she otherwise would not have had.

Organ transplants are an area fraught with ethical issues. No matter what happens, when a compatible organ becomes available, that organ will generally only go to one person while another person will be denied their transplant. Given that many people on the list are living on borrowed time, an acceptance or denial can mean the difference between life and death. To deal with this problem and the fact that there are simply more people who need organs than their are available transplant organ, a system has evolved that places people on a list and ranks them according to the severity of their condition and other factors. Ideally, where someone ranks on a respective list is should be made based on objective factors, so it’s possible for someone in their 60s to place higher on the list than someone in their 30s despite the fact that the 30 year-old is likely to live longer if the transplant is successful. Being a system designed by humans, it often doesn’t work perfectly, but it does seem like a system designed to bring some objectivity and fairness to an issue fraught with emotion.

Bethany Mandel describes the process in more detail:

Organ transplant list rules are complicated, and vary by the type of organ. Generally, every organ transplant system in the country operates as independently as possible, with a panel of doctors assigning each patient a score based on a number of factors, which then determines their ranking on the list. Because the list of those in need of transplants is far longer than the list of potential organs, impartial panels of doctors blindly determine a patient’s position on the list, which can change depending on if their condition changes. Because of the biological differences between pediatric and adult patients, there are different criteria for each group for lung donation nationwide.

There are fewer pediatric organs available. However, every pediatric lung is first offered to a pediatric patient before it is offered to an adult. Adult patients are given a “lung allocation score,” which was developed by the United Network for Organ Sharing (UNOS), whose board decided the criteria used to determine a patient’s position on the lung transplant list. There have been far fewer pediatric lung transplants than adults, therefore the UNOS has assigned different criteria for patients under the age of 12 waiting for a lung transplant as they await further data to accurately determine how to assign a more precise score to children. Computers randomly sort patients, and while pediatric patients’ rank may be disadvantaged on the list according to their score, which is less precise than that of adults, the UNOS favors pediatric patients in other ways in addition to offering pediatric patients first priority for pediatric lungs, such as assigning a priority blind to a patient’s prognosis, a criteria which is factored into the scores of adult patients. Pediatric patients under the age of 12 also have a much wider geographic area from which they can be offered lungs, as compared to adolescent and adult patients, another advantage which is only offered to pediatric patients who may otherwise be disadvantaged.

Now, though, there’s some worry that the way Sarah Murnaghan’s case was handled prior to her transplant will set a precedent that could upset the entire system:

[E]veryone hopes for the best for Sarah and her family, the match comes after a media campaign, a lawsuit and a federal court order, not to mention pressure from lawmakers on HHS Secretary Kathleen Sebelius to personally intervene on behalf of a single child. It has experts from the transplant community worried about a precedent with the potential to open up the system to tampering from the outside. And that could begin chipping away at the careful framework set up to fairly distribute donated organs, the most precious — and scarce — resources in the health care system.

“If the distribution of organs becomes subject to the success of individual publicity campaigns, with organs going to those who hire the best PR firms and lawyers, who on the waiting list would remain confident that their priority would be decided on the merits?” Daniel Wikler, a medical ethics expert at Harvard, said in an email. “And who would agree to donate organs to a system supposedly based on rational, humane, and fair selection criteria but that would actually be determined by the assets of the highest bidder?”

He noted that if one person gets moved up on the list and others drop down, it must be justified.

In a highly unusual move that sent a shockwave through the transplant community, a federal judge last week ordered Sarah Murnaghan and Javier Acosta, 11, onto the adult waiting list, suspending a rule that effectively bans children under 12 from receiving adult lungs.

Instead, young children are first in line to receive organs from donors around their age, which is often preferable because they are a better fit for their chest cavities. But pediatric donors are even rarer than adults.

(…)

Few people have risen to defend an absolute rule that bars children under 12 from the adult waiting list. In fact, many experts say that setting up a good appeals process to review especially borderline cases could be an improvement, because the age 12 cutoff is arbitrary in a sense. There’s not much difference between an 11 ½-year-old and a 12-year-old for instance, and in general some children grow more quickly or slowly than others and could be considered in the older or younger category, from a clinical perspective.

“I’m not saying I disagree with having an appeals process, I’ve thought the rule could be reviewed before,” said Dr. David Weill, director of the lung transplant program at Stanford Hospital.

The main concern is that the process has been influenced by the media spotlight on individual cases, or an order from a court. That’s the line that experts worry has been crossed.

“They made a major policy decision that really changed the entire allocation scheme,” Weill said, adding that that should not be done on an ad hoc basis. Although the underlying policy hasn’t been officially changed, the appeals process allows children to be prioritized by the same standards as adults, which they were not before. None of the three committees that reviewed the “under 12” policy at the transplant network concluded that there was scientific evidence to justify an emergency change.

Sarah’s case has already led at least one other family to also head to the Courts to seek to get their child put on the adult list like Sarah was and, given the attention that her case has got, we can probably expect others to do this in the future. I’m not at all certain that this is a good thing, and I fear that getting the courts involved in the organ donation process will make things worse for people waiting for organs, not better. With regard to the specifics of Sarah’s case, there does appear to be a growing consensus that the rule that bars all children under 12 from the adult transplant list is far too rigid and needs to be re-examined. This needs to be done, however, in a manner that addresses the science of the issue rather than something that plays itself out in the legal system and depends heavily on how skilled a patients’ lawyer is and how sympathetic their case is to whichever Judge it gets assigned to.

As Mandel notes later in her post, getting the legal system involved poses serious dangers to the entire organ transplant system:

While the Murnaghan case is tragic, it’s best to keep in mind that wariness of judicial activism is strong in the conservative movement for a reason. By circumventing the rules that thousands of other families abide by, this federal judge has introduced the very real possibility that the carefully crafted rules regarding organ allocation in this country will now be decided not by trained medical professionals operating under a strict series of guidelines, but instead by judges who have no involvement in the complicated medical and ethical field of organ donation. If federal courts are soon deluged by desperate families seeking exceptions to organ transplant rules, this ruling will, and should be, viewed as what it is: a well-intentioned but misguided opening of Pandora’s Box.

I am certainly not faulting Sarah’s parents for the course of action that they took. Their daughter likely would have died in the very near future if she hadn’t gotten a transplant, and seeking to have the under-12 rule repealed via the Court system was the only real option that they had available to them. Any parent in a similar situation would have done the same thing, and it’s understandable to see why. However, Courts can only deal with cases like this on an individual basis. They generally won’t consider the consequences in the future of upsetting the medical ethics apple cart by ordering that one patient be advanced up the list to those who are already on the list or the ones who don’t get as a high a position on the list as they might have otherwise. The result may be good for one person, but it’s going to work to the disadvantage of others, and it’s likely to make it that much harder to run an organ transplant system that presents painfully difficult ethical issues on a daily basis.

I hope that Sarah makes it through this, but I also hope that her case isn’t an indication of how these issues will deal with in the future.