On Dec. 9, 2013, a 13-year-old California girl underwent a tonsillectomy to alleviate obstructive sleep apnea. It’s a procedure performed a half-million times a year in the United States. She had postoperative bleeding. On Dec. 12th, she was declared dead by neurological criteria, colloquially called brain death. She remains on a ventilator. Her parents refuse to accept the diagnosis and obtained judicial injunctions ordering the physicians to not withdraw the ventilator. The tests to confirm death by neurological criteria have been repeated by several physicians, including one selected by the court, and the local coroner has issued a death certificate.
Death after tonsillectomy is rare but a known risk. A quick Google search finds many newspaper accounts of these heart-wrenching events. The most often cited risk of mortality is 1/15,000. That calculates out as 30 deaths per year in the United States related to the procedure. The mechanism is usually postoperative bleeding or allergy to the anesthesia.
The exact events that occurred in the California case of Jahi McMath, are protected by HIPAA. I have no access to facts other than what is being reported in the general media. When events like this occur, there often are allegations or suspicions of negligence. This is a natural emotional reaction stemming from disbelief, denial, and the desire to blame somebody for a highly unexpected tragedy. Sometimes those allegations are true, but that is for a court to decide. What has been unusual in this case is the prolonged legal battle over accepting the declaration of death.
The process of declaring death by neurological criteria is usually set in policies at each hospital in accordance with local resources, compliance with state laws that regulate medical practice, and nationally accepted criteria. These date back to a 1968 Harvard committee that created the criteria to deal with advances in medical technology, particularly ventilators, as well as the desire for facilitating organ donation (JAMA 1968;205:337-40). These criteria, and process for documenting them, have met widespread acceptance for 45 years, even within antiabortion circles such as the Catholic Church. Among Halacha-observant Jews, some rabbis do not accept these criteria while others affirm them. That difference of opinion is partly responsible for New Jersey being the only state with statutory recognition of a religious objection to the Harvard criteria. The most recent New York regulation calls for "reasonable accommodation" of those with religious objections and lays out the process of extensive testing.
In all other states, virtues of compassion and respect are the primary motivations for accommodating nonacceptance of the declaration of brain death. Many ICU doctors can tell stories of a case in which they delayed withdrawal of the ventilator and other technology from a brain-dead patient. Usually, it’s a delay of a few hours while some next of kin travels to bedside to be present at "the moment of death." In those instances, my practice has been to complete the death certificate using the earlier time at which death was determined by neurological criteria. This is important if organ harvest is involved.
Clarity amid care
There are fine points on the criteria and process of declaring brain death that are the subject of debate among medical ethicists, who are generally ready, willing, and able to argue about minutiae. One listserv for medical ethicists generated 280 postings in 5 days on this topic while the legal back and forth was occurring in California. I wish to emphasize two take-home messages.
First, this case is not about withdrawing life support or artificial nutrition and hydration from a patient in a coma or a persistent vegetative state.
A person in PVS is alive and has brain activity. Legal precedents, starting with the case of Karen Ann Quinlan in 1976 through Nancy Cruzan in 1990, established the legality and appropriateness of withdrawing life support from patients in PVS if that was their preference. Those precedents were revived and reaffirmed in the battle over Terry Schiavo in 2005. There are accounts of rare events in which people, after being in a deep coma (though less deep than PVS) for years, regained some awareness and ability to communicate. That is not the situation for properly diagnosed brain death. It is irreversible. There is no brain activity. There is no responsiveness other than spinal reflex, which can be misinterpreted by family members. Those movements are a source of moral distress for nurses required to care for a patient while the diagnosis of death is being confirmed.
Second, there are things that can be done to avoid the situation unfolding in California.