Ideological differences threaten to muddy the definition of death in the United States — with potentially negative consequences for clinicians and people awaiting organ transplants.
NATURE
Dead in California but alive in New Jersey: that was the status of 13-year-old Jahi McMath after physicians in Oakland, California, declared her brain dead in 2013, after complications from a tonsillectomy. Unhappy with the care that their daughter received and unwilling to remove life support, McMath’s family moved with her to New Jersey, where the law allowed them to lodge a religious objection to the declaration of brain death and keep McMath connected to life-support systems for another four and a half years.
Prompted by such legal discrepancies and a growing number of lawsuits around the United States, a group of neurologists, physicians, lawyers and bioethicists is attempting to harmonize state laws surrounding the determination of death. They say that imprecise language in existing laws — as well as research done since the laws were passed — threatens to undermine public confidence in how death is defined worldwide.
“It doesn’t really make a lot of sense,” says Ariane Lewis, a neurocritical care clinician at NYU Langone Health in New York City. “Death is something that should be a set, finite thing. It shouldn’t be something that’s left up to interpretation.”
Since 2021, a committee in the Uniform Law Commission (ULC), a non-profit organization in Chicago, Illinois, that drafts model legislation for states to adopt, has been revising its recommendation for the legal determination of death. The drafting committee hopes to clarify the definition of brain death, determine whether consent is required to test for it, specify how to handle family objections and provide guidance on how to incorporate future changes to medical standards. The broader membership of the ULC will offer feedback on the first draft of the revised law at a meeting on 26 July. After members vote on it, the text could be ready for state legislatures to consider by the middle of next year.
But as the ULC revision process has progressed, clinicians who were once eager to address these issues have become increasingly worried.
Fuelling their fears is a rising tide of political polarization and mistrust of scientific expertise. Some clinicians following the ULC discussions say that the idea of brain death itself is facing its greatest challenge since its conception in the 1960s. The outcome could have serious implications for intensive care units (ICUs) across the United States and might affect the availability of vital organs for transplant. And although few expect the ULC’s recommendations to erase the idea of brain death, some observers fear that the doubts and narratives sown throughout the process could have a lasting effect on state laws and on public perception.
