Blog Post

Should judges be able to overrule medical decisions?

June 6, 2013

    Dan Diamond, Managing Editor

    A first-of-its-kind ruling by a Philadelphia judge isn’t so rare anymore—because the judge just ruled again.

    One day after ordering HHS to suspend its lung allocation policy and place 10-year-old Sarah Murnaghan on the adult transplant list, Judge Michael Baylson on Thursday issued a similar order for a second patient, 11-year-old Javier Acosta.

    The adult waiting list is normally for patients who are at least 12 years old.

    Both severely ill children suffer from cystic fibrosis and desperately need replacement lungs. Yet bioethics experts and medical researchers say that Baylson's unusual orders are troubling, not just because they skirt federal law but because they also ignore medical research on transplanting adult lungs into children.

    There's "no case known to me ... where a judge has stepped in the transplant arena" and gotten involved in which patients should receive which organs, Arthur Caplan, the director of the division of medical ethics at NYU Langone Medical Center, told me on Thursday afternoon.

    "It's unprecedented."


    Lung transplant controversy
    Sebelius: I can't intervene | Judge: Yes, you must

    Why this judge got involved

    Caplan noted that disputes around end-of-life care have sometimes led to legal intervention and, occasionally, political attention. (The Terri Schiavo case was perhaps the most famous example of this.) But judges historically steered clear of decisions around organ allocation.

    So why get involved now? Good question, Caplan says.

    Murnaghan's "parents organized a very effective PR campaign," he notes, and the case caught the eye of Congress. And it didn't hurt that the patient was a photogenic little girl.

    "Pressure really built ... and the judge was not unaware of the pressure," Caplan added.

    This may be only the beginning.

    Consider that there are about 76,000 active candidates on the Organ Procurement and Transplantation Network waiting list, but just a fraction—maybe one-third—will end up undergoing a transplant.

    That leaves a lot of unhappy, and potentially litigious, patients, parents, and families. The lawyer who represents both the Murnaghan and Acosta families already has warned that more lawsuits are coming, Maggie Fox reports for "Vitals" at NBCNews.com.

    Broader medical concerns

    Based on Baylson's rulings, OPTN is now listing Murnaghan as a candidate for an adult lung transplant, and the panel is already holding an emergency review on whether its current allocation system needs to be revised.

    However, it's unclear whether transplanting adult lungs into children is a medically sound decision, reflecting officials' broader rationale behind having a cut-off at age 12.

    "The notion that it's arbitrary to use an age [to dictate transplant policy] doesn't make sense," Caplan argues. First, "laws do that all the time—there's a reason we decide that you can do certain things at age 18, not 17 and 11 months, or that you're allowed to do things at 21 that you can't do at 20."

    And in this case, "large organs from adults don't fit into smaller children. And 12 [is] the general point when that's true."

    'Floodgates now open'

    Baylson's decision on Thursday, and the likely rush of other concerned parents seeking to have their own child bumped up on the transplant list, confirmed Caplan's worst fears, he told me.

    "I worry in having outsiders second-guess the system, you open the door to a flood of other people" who will try to jump the queue and challenge the rules, he predicts.

    Dr. Dorry Segev, a transplant surgeon at Johns Hopkins, had a more stark warning.

    "Every choice that is made in transplantation in favor of one patient means the likely death on the list for another patient," Segev told Lauran Neergaard at the Associated Press.

    "I don't know if the policy is right. I don't know if it should be changed," Aaron Carroll—a pediatrician and and the associate director of Children's Health Services Research at Indiana University School of Medicine—writes at The Incidental Economist.

    "But I have to tell you, I'm more comfortable with the parents, doctors, and UNOS figuring this out than letting the politicians and political activists do it. I'm more comfortable when government doesn't get involved in individual decisions about care."

    On the Advisory Board blogs

    • Care Transformation Center Blog: Bonnie Jin profiles a health network that reduced Medicare readmissions to 1.62% by employing veteran medics as transition coaches.
    • Cardiovascular Rounds: Jeffrey Rakover explains how Boston Children's Hospital uses instances of clinical variation to inform changes to its care pathways.
    • Care Transformation Center Blog: Cabell Jonas and Yulan Egan offer three tips for simplifying care for medically complex children.

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