by James Zisfein, M.D.
Chief, Division of Neurology, and Chair, Ethics Committee, Lincoln Medical Center
Is the objection to determination of brain death by Jahi McMath’s parents based on religious principle, disputed diagnosis, or both? Media reports go in all directions. And does it matter? Should it matter?
In New York (considered as a transfer destination for Jahi), it matters. New York Department of Health regulations require hospitals to provide “reasonable accommodation” (as defined by each hospital) when there is an objection to a brain death determination on a religious or moral basis:
Hospitals must establish written procedures for the reasonable accommodation of the individual’s religious or moral objections to use of the brain death standard to determine death when such an objection has been expressed by the patient prior to the loss of decision-making capacity, or by the Surrogate Decision-maker. Policies may include specific accommodations, such as the continuation of artificial respiration under certain circumstances, as well as guidance on limits to the duration of the accommodation.
Please note that “reasonable accommodation” does not give the family veto power over the determination of death nor the performance of tests necessary to make that determination. It does, however, allow continuation of ventilator support and routine nursing care after a brain death determination, thereby preserving for the family the illusion of life until the heart stops. Other medical supports are discontinued, e.g., ICU care, physiologic monitoring, blood and radiologic testing, CPR status, medications, and nutrition and hydration support.
When there is a disagreement with the diagnosis of brain death (e.g., a belief that the patient is merely in coma and will recover), rather than a religious or moral objection to the concept of brain death, reasonable accommodation is not required (although being unreasonable is frowned upon):
Since objections to the brain death standard based solely upon psychological denial that death has occurred or on an alleged inadequacy of the brain death determination are not based upon the individual’s moral or religious beliefs, reasonable accommodation is not required in such circumstances. However, hospital staff should demonstrate sensitivity to these concerns and consider using similar resources to help family members accept the determination and fact of death.
One interesting project would be to survey New York hospitals to see how they actually implement reasonable accommodation. I suspect that most hospitals do what Health and Hospitals Corporation (the consortium of New York City’s public hospitals) does, i.e., continue the ventilator but stop ICU-level care and other medical interventions. In that case, the heart stops within hours or a few days, which ends the objection.
The New York regulation exists for political reasons (surprise!) but there may be an ethical justification as well. When brain death is a disputed diagnosis — i.e., when the family does not challenge the concept of brain death per se, but instead claims that the twitch of the toe is a sign of life, or a putative treatment has not been tried, or doctors are often wrong and the patient might recover — in these cases all medical supports, including the ventilator, should be removed. Dead people should not be allowed to indefinitely occupy hospital beds.
A religious objection is different. As many have pointed out, there is no watertight biological proof that brain death is death. Rather, it is a medical and societal consensus, and there are those who reject that consensus. When ancient religious texts are cited in support of a cardiac-only definition of death, who am I to dispute these? My medical degree, my neurologic training, and my hospital privileges are useless in that argument. We therefore allow the patient to remain in a hospital bed, connected to a ventilator, but without other treatments. When the heart inevitably stops, we are then in agreement that the patient has died.
Let me hasten to add that doesn’t mean death determination should be a free-for-all. New Jersey went off the rails in allowing this. Something as basic as defining death has to be the rule for all. In keeping death as a diagnosis made by a physician, but giving special status to religious/moral objections, New York got it right.