Saturday, December 3, 2016

When brain death belies belief

Yanke, G., Rady, M.Y. & Verheijde, J.L. When brain death belies belief. J Relig Health (2016) 55: 2199-2213. doi:10.1007/s10943-016-0298-4

The case of Jahi McMath has reignited a discussion concerning how society should define death. Despite pronouncing McMath brain dead based on the American Academy of Neurology criteria, the court ordered continued mechanical ventilation to accommodate the family’s religious beliefs. Recent case law suggests that the potential for a successful challenge to the neurologic criteria of death provisions of the Uniform Determination of Death Act are greater than ever in the majority of states that have passed religious freedom legislation. As well, because standard ethical claims regarding brain death are either patently untrue or subject to legitimate dispute, those whose beliefs do not comport with the brain death standard should be able to reject it.

From the article

The “sincerity of belief” standard requires that the religion belief system occupy a meaningful place in the life of the claimant (US v. Seeger1965). Courts must limit their inquiry to whether or not the belief is sincerely held and cannot evaluate the truth of the religious beliefs (U.S. v. Ballard1944). In the McMath case, the Court did not question the sincerity of McMath’s family’s religious belief in the denial of brain death even though such a belief is principally limited to a small minority of the population (i.e., some Orthodox Jews, Buddhists, Muslims, Native Americans, and Shinto sects). However, as mentioned previously, religious exercise under RFRA is interpreted very broadly to include actions that are not compelled by, or central to, a system of religious belief. This suggests that a Christian who held a spiritual belief that death did not occur until the heart stops beating is entitled to the free exercise of this belief even if it is not considered part of Christian doctrine.

Once a believer’s sincerity is established, requiring someone to accept brain death as legal death against his or her religious beliefs creates a substantial burden on free exercise rights. Thus, in order to uphold the brain death standard, states with RFRA-like provisions would have to demonstrate that there is a compelling state interest that justifies the burden on a person’s religious belief…

Whether or not a constitutional challenge to the neurological criteria of death provisions of the UDDA on grounds of religious freedom would be successful is one issue. A separate issue is whether a religious exemption should be granted. This normative question has been peripheral to the academic debates that have resurfaced in the aftermath of the McMath case. However, the normative issues are very important for the viability of the religious exemption since society typically holds that certain spiritual claims be based in truth, or at least not be obviously false. Thus, a constitutional claim based on freedom of religion that rejected cardio-pulmonary death as biological death would likely fail since it does not conform with our scientific knowledge that the irreversible cessation of blood circulation and breathing does, in fact, constitute death. If it is a fact that brain death is likewise equivalent to biological death, then a religious claim that denies this is problematic.

Those who support the neurological criteria of death found in the UDDA make several factual and normative claims concerning the brain death standard that, if true, could undermine the religious view that brain death is not akin to human death. These include the following assertions: (1) Someone who is brain dead is biologically dead, or, in the alternative, he or she is “as good as dead”; (2) the brain death standard is an uncontroversial, factual reflection of scientific reality; and (3) the brain dead cannot be harmed. We will argue that because all of these claims are either patently untrue or subject to legitimate dispute, those whose beliefs do not comport with the brain death standard should be able to reject it…

For some reason, the President’s Council believes that the PVS patient’s ability to swallow liquid, or have sleep and wake cycles, constitutes vital work (President’s Council on Bioethics 2008, 61), but a brain dead patient’s ability to digest, grow, fight infections, and give birth does not…

Determining what a human’s “vital work” should be or what constitutes being “as good as dead” is a conversation that should involve those outside the medical community and is arguably open to individual interpretation and choice, particularly when someone rejects the brain death concept…
Contrary to what Magnus et al. state, the concept of brain death is not clearly defined within the neurological community and its diagnosis is still subject to veritable legal disputes…

There is indirect evidence of a potentially high error rate that results from employing the AAN guidelines as a standard given a finding that 60 % of 41 brain dead patients examined on autopsy had normal or minimal damage to the brainstem due to ischemia (i.e., a restriction of blood supply to the area)…

If brain death was simply an uncontroversial diagnosis consistent with biological death, then religious and secular objections to the standard would be unfounded. However, this is not the case. What it means to be alive or dead is not always definitive. Instead of acknowledging this, our legal system has chosen to draw a line between people in similar states of consciousness and declare some of them to be living and others to be dead. Though this distinction is not completely arbitrary, it does involve value judgments that are subject to criticism. Because brain death has a normative component, we should consider permitting different conceptions of death that reflect and accept the divergent views of a pluralistic society. If the concept of brain death serves the public policy goal of realizing the benefits of organ donation, then it should also be modified to allow people to follow their religious beliefs and personal values when the medical facts are in dispute.


  1. As in the case previously mentioned, family objections to the “official diagnostic algorithm” may be religious, with cessation of cardiac function necessary to define death. In several states, there is legal provision for such objection. There may, alternatively, simply be parental disbelief in the “official diagnostic algorithms.” In the Jahi McMath case, her mother expressed the notion that the patient is sleeping and will ultimately awaken. There are, of course reports of patients declared brain dead not only awakening but demonstrating gratifying recovery. The retort, of course, is that such brain-dead patients were not really brain dead and that the “official diagnostic algorithm” used in their case was deficient. It has been argued that, in the face of medical controversy regarding whether brain death is death, the family of the patient should have the prerogative to decide based on their religious and cultural views.

    Recent events such as the Jahi McMath case have indicated another function of the brain death rubric, that is, to force termination of care on unwilling parents or family. Because the patient is dead, any further supportive care is totally illogical. Indeed, by this logic, once the diagnosis is made, the ventilator should be immediately terminated without waiting for any family gathering or special final moment, just as one would not gather the family to be present at the death of an already dead patient. The notion of brain death as death certainly simplifies such matters, although akin to the first two traditional reasons for the brain death concept, perhaps hospital ethics committees instead of brain death could also force termination of care on unwilling parents or families, making the brain death construct unnecessary for this reason, as well.

    Breningstall GN. Defining death: when physicians and family differ. Pediatr Neurol. 2014 Oct;51(4):476-7.

  2. Osamu Muramoto. Informed consent for the diagnosis of brain death: a conceptual argument. Philosophy, Ethics, and Humanities in Medicine 201611:8 DOI: 10.1186/s13010-016-0042-4


    This essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for over 2 years illustrates how such a consent would have made a crucial difference.

    Conceptual, philosophical, and ethical analysis.

    I first consider a conceptual justification for the use of consent for certain non-beneficial and unwanted medical diagnoses. I suggest that the diagnosis of brain death falls into this category for some patients. Because the diagnostic process of brain death lacks the transparency of traditional death determination, has a unique epistemic structure and a complex risk-benefit profile which differs markedly from case to case, and presents conflicts of interest for physicians and society, I argue that pre-diagnostic counseling and informed consent should be part of the diagnostic process. This approach can be termed as “allow cardiac death”, whose parallel logic with “allow natural death” is discussed. I also discuss potential negative impacts on organ donation and health care cost from this proposal and offer possible mitigation. I show that the pre-diagnostic counseling can improve the possibility for well-thought-out decisions regarding organ donation and terminating life-support system in cases of hopeless prognosis. This approach differs conceptually from the pluralism of the definition of death, such as those in New Jersey and Japan, and it upholds the Uniform Determination of Death Act.

    My intention is not to provide an instant panacea for the ongoing impasse of the brain death debate, but to point to a novel conceptual ground for a more pragmatic, and more patient- and family-centered approach. By enabling the family to consent to or decline the diagnostic process of brain death, but not to choose the definition of death, it upholds the current legal definition of death.