Tuesday, March 8, 2016

Brain death 4

Johnson LS. The Case for Reasonable Accommodation of Conscientious Objections
to Declarations of Brain Death. J Bioeth Inq. 2016 Jan 5. [Epub ahead of print]

Since its inception in 1968, the concept of whole-brain death has been contentious, and four decades on, controversy concerning the validity and coherence of whole-brain death continues unabated. Although whole-brain death is legally recognized and medically entrenched in the United States and elsewhere, there is reasonable disagreement among physicians, philosophers, and the public concerning whether brain death is really equivalent to death as it has been traditionally understood. A handful of states have acknowledged this plurality of viewpoints and enacted "conscience clauses" that require "reasonable accommodation" of religious and moral objections to the determination of death by neurological criteria. This paper argues for the universal adoption of "reasonable accommodation" policies using the New Jersey statute as a model, in light of both the ongoing controversy and the recent case of Jahi McMath, a child whose family raised religious objections to a declaration of brain death. Public policies that accommodate reasonable, divergent viewpoints concerning death provide a practical and compassionate way to resolve those conflicts that are the most urgent, painful, and difficult to reconcile.

From the manuscript:
This paper will argue for universal adoption of reasonable accommodation policies modelled on New Jersey’s statute. First, I’ll assess whether there is reasonable disagreement when it comes to whole-brain death by examining current medical and philosophical controversies concerning the determination of death. Next, I’ll discuss the Jahi McMath case, in which the family of a teenaged girl in California raised religious objections to a declaration of death by neurological criteria. I’ll then examine existing “reasonable accommodation” policies in California, New York, and New Jersey, and consider how “reasonable accommodation” in defining death might be interpreted by looking at the “reasonable person” standard and federal laws that mandate “reasonable accommodation” in other contexts, and also consider the question of to whom reasonable accommodation applies. I’ll then consider what definitions of death might be prima facie reasonable and merit accommodation. Finally, I'll show why reasonable accommodation is needed, and how a conscience clause modelled on New Jersey’s statute can respect plurality and diversity, avoid conflicts over the determination of death, and have other ethically significant salutary effects as well…

Since its inception, the concept of brain death has been contentious, and pronouncements of the impending death of brain death have been frequent. While whole-brain death is decidedly a matter of settled law, both in the United States and elsewhere, the matter has hardly been settled from a medical, moral, or philosophical standpoint.

Brain death is deeply counterintuitive and defies traditional, common-sense notions of life and death…

It is little wonder that the tongue must be tied in knots to speak of the “brain dead.” The council refers to the “brain dead” patient as a “heart-beating cadaver” exhibiting “something like health,” with a mechanical ventilator “in essence, ventilating a corpse–albeit one that in many ways does not look like a corpse”. It is difficult, in the face of medical evidence and common sense, to maintain that brain death is really, truly death, but there is ample evidence that whole-brain death is not even really, truly indicative of a completely dead brain.

The question Is there reasonable disagreement about whole-brain death? can be answered in the affirmative. Although the orthodox medical and legal position is that whole-brain death is death, there remains considerable and reasonable disagreement and doubt about defining death by neurological criteria….

New Jersey’s law is the only one in the United States to mandate that if a patient objects on religious grounds to neurological criteria for determining death, then death “shall be declared and the time of death fixed, solely upon the cardio-respiratory criteria”. That is, when there is a religious objection to the use of neurological criteria, the patient is not considered legally dead unless and until there is an irreversible cessation of all circulatory and respiratory function. Moreover, the law prohibits health insurance providers from denying coverage on the basis of brain death when there is a religious objection, thus removing the potential for financial conflicts of interest for hospitals and financial coercion of families facing decisions concerning the withdrawal of life support. New Jersey’s law, unlike New York’s and California’s, specifically privileges religious objections, but not other conscientious objections. Despite this omission, its provisions are uniquely and genuinely accommodating of conscientious differences in the determination of death…

If providers and hospitals are under no obligation to allow for an alternative definition of death, they can pay little more than lip service to “reasonable accommodation,” and families and patients have little choice but to acquiesce. That was certainly evident in the Jahi McMath case, where, following the hospital’s declaration of death, a death certificate was issued, and the child’s still-breathing “corpse” was released to the coroner rather than her family. These are not practices enacted when patients are alive. Since Jahi McMath was declared medically and legally dead and, under California law, she “is dead,” it can hardly be said that the family’s views regarding the definition of death were accommodated at all. The sole accommodation afforded the family, per court order, paradoxically supports their contention that Jahi is not dead: she remained on ventilatory support before, during, and after she was transferred to the coroner, a practice that is hardly standard when dealing with cadavers…

There exists reasonable disagreement about the adequacy, coherence, and validity of whole-brain death. Well-informed, reasonable people dissent from the whole-brain-death orthodoxy, and there is compelling evidence that brain death is not death as it has been long and commonly understood. Brain death is counter-intuitive, defies common sense, and runs counter to the religious beliefs of many people in a number of religions that, taken together, represent a significant segment of the world’s population. Genuine conscientious objections to declarations of death using neurological criteria in the United States must too frequently be adjudicated in court at considerable cost to families, healthcare providers, and taxpayers. These disputes also cause significant and prolonged emotional distress to families already struggling with the loss of a loved one.

The stakes are extremely high in disputes concerning declarations of brain death and the definition of death because the debate is, in essence, over the moral status of a human being. To declare that someone is dead is to say they are no longer a person with full moral and legal rights and no longer entitled to the care they would receive if we considered them to be living members of the moral community. The debate is, then, a moral debate that will not be resolved by science alone. No technological advance, no brain scan, or neurological test will settle the matter once and for all. Similarly, laws that endorse whole-brain death as death will not settle the matter, especially in those parts of the world like North America and Europe that are increasingly heterogeneous and home to people of diverse religious and cultural traditions and moral convictions. In a pluralistic society, consensus will not be forged or forced by either law or medicine when it comes to the definition of death…

The optimal solution is a compromise, one that does not scrap the currently accepted definitions of circulatory-respiratory death and whole-brain death, but rather permits conscientious objections to declarations of brain death through reasonable accommodation statutes. The optimal solution should not create or accept a situation of complete cultural or ethical relativism in which any and all definitions of death are equally valid and endorsed by law and public policy. Indeed, the two existing definitions of death should suffice, for they already include the most viable, least controversial, alternative to brain death. Circulatory-respiratory death is a legally and medically sound, reasonable definition of death, and one that enjoys near universal acceptance across cultures and religions. It can reasonably be accommodated as an alternative to brain death, and, as I have argued, it would be unreasonable and unethical to refuse to accommodate it…

It is the decent and compassionate thing to allow a grieving family to be reconciled with the loss of a loved one on terms they can accept, without the threat of medical neglect or unilateral withdrawal of life support. Whether Jahi McMath is alive or dead may be in dispute, but there is no question that a family has lost a beloved child, a child who will never again be as she once was. Children’s Hospital Oakland used its time and resources to fight McMath’s family in court and repeatedly and publicly referred to the child as “a deceased person” and a “dead body” (BBC 2013). But if Jahi had “died” in New Jersey instead of California, she would still be alive, both in the eyes of her family and under the law.

The controversies over brain death are unlikely to be resolved in the near future, but adopting public policies that accommodate reasonable, divergent viewpoints concerning death provides a practical and compassionate way to resolve conflicts that are urgent, painful, and resistant to reconciliation.

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