By: Gali Katznelson
Jahi McMath was issued a death certificate four years ago in California. Today, at the age of 16, she remains connected to a ventilator in an apartment in New Jersey. Jahi was declared brain dead by her clinicians at Oakland’s Children’s Hospital following a cardiac arrest after a tonsillectomy. A legal battle between Jahi’s mother and the hospital ensued, with the mother requesting that Jahi remain on life support. The hospital refused, and after the hospital released Jahi to a coroner who issued her death certificate, Jahi’s family transported her to a paediatric ICU in a New Jersey hospital. New Jersey is the only state with a law requiring hospitals to accommodate patients whose families do not accept a determination of brain death on religious grounds.
Religious objections to brain death come from some members of the Orthodox Jewish, Japanese Shinto, Native American and Muslim communities. New York, California and Illinois also mandate accommodations for religious objections to brain death but these states leave the nature of the accommodation to the discretion of individual hospitals. This is unlike New Jersey, which allows an exception to brain death criteria and imposes a duty to accommodate patients who reject brain death state-wide. Should all states enact some form of a religious accommodation to brain death? To consider the same person to be alive in one part of the country but dead in another seems illogical. But rather than adapting current laws to accommodate objections based on religion, a more coherent approach might be to redefine the nature of the law itself.
As it stands in the US, the determination of brain death by neurological criteria is equated to a legal definition of death. This history dates back fifty years, to a report by the Harvard Ad Hoc Committee on Brain Death that defined irreversible coma as a new criterion for death. Neurologic criteria for death eventually made its way into law through the 1981 Uniform Declaration of Death Act (UDDA). This model statute states that death could be determined for an individual who has sustained either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem, made in accordance with acceptable medical standards. Every state has adopted some version of this statute.
At last week’s conference at Harvard Medical School, Defining Death: Organ transplantation and the 50-year legacy of the Harvard report on brain death, Dr. Lainie Ross and Dr. Robert Veatch explained, based on their book, that death is not merely a scientific concept but a religious and philosophical question with no clear answer. The way in which we conceptualize death, using neurologic criteria, is a social construction rather than a biological fact. You see, the law currently upholds a concept of brain death based on a “whole-brain” concept. This concept is defined by the irreversible loss of all or most of the function of the brain. Increasing evidence, however, is putting the whole-brain definition into question. Jahi’s ability to undergo puberty, a process mediated by the brain structure, the hypothalamus, is one example. Other people reject neurologic criteria to define death, and only accept death on the basis of irreversible loss of circulatory function. Another group believes in a “higher-brain” based definition of death, with consciousness or loss of cerebral activity as the criteria. Unlike circulatory or whole-brain death, higher-brain death is not currently recognized in any law. Within these three groups, countless variations exist.
Since people define death in different ways, Dr. Ross and Dr. Veatch propose a public policy that supports choice in the definition of death. They conclude that a default definition of death should exist, but that individuals, as well as their substitute decision makers, should be given space to decide among plausible alternatives if they object to the default. The alternatives would be death by circulatory criteria and death by higher-brain criteria, and the default would be death by whole-brain criteria. This idea is compelling. In a pluralistic and liberal society that highly values individual choice and autonomy, and that lacks a clear conception of the definition of death, allowing people to decide on their own concept of death ensures that people’s values are respected.
This proposal is slightly different than proposals to add religious exceptions to existing state laws. First, deciding who merits a religious accommodation is difficult to test. Ross and Veatch’s proposal expands the accommodation to philosophical conceptions as well religious ones. Second, a law with an exception for religious reasons still frames whole-brain death as the truth. Although Dr. Robert Truog and Dr. Frank Miller have explained that the concept of brain death is “legal fiction,” rather than a biological fact, they have shown that prominent bioethicists continue to frame brain death as biological death. Those in the media refer to individuals whose families seek religious exemptions as “corpses” and “cadavers” when in fact, these people are not the biological equivalents of corpses or cadavers. We need a law that acknowledges this reality and gives equal weight and respect to various conceptions of death.
The law proposed by Dr. Ross and Dr. Veatch acknowledges death as the social construction that it is, and allows people to determine for themselves, within limits, which biological state warrants a legal status of death. In some cases, this would mean that individuals who meet neurologic criteria for brain death are sustained on mechanical ventilation until their heart stops beating. In others, this would mean that patients with severe brain damage, even if it does not meet neurologic criteria for death, could be removed from a ventilator and serve as organ donors. Currently, patients in persistent vegetative states whose life support is withdrawn are not deemed legally dead before the withdrawal of life support, and for legal and ethical reasons, cannot serve as organ donors until they are declared dead according to circulatory criteria. This process results in organs that are less viable than those from patients who are brain dead. Most patients without a strong preference either way, would continue to be defined under the whole-brain criteria, although Ross and Veatch do note that this definition should be clarified in accordance with emerging scientific evidence.
There are complexities to consider, as with any proposal for a massive cultural shift. Physicians would bear the burden of engaging patients in shared decision making to ensure that patients truly understand their personal values, the state of the current science, and the ramifications of choosing a death for themselves. Healthcare systems and insurance programs would also be faced with allocating resources in a way that supports those patients who opt for a circulatory definition of death without compromising the care of other patients. These issues are important, but not insurmountable.
In the absence of a true biological or moral basis for the current conception of brain death, the law ought to reflect that death is largely a values judgement. Individuals should be allowed to state a preference during advanced care planning as to which definition of death most closely aligns with their personal beliefs. Religious accommodations are a step in this direction, but a more respectful and coherent law would give everyone a choice in defining their own death.