By Ann Neumann

Thaddeus Mason Pope is an animated, towering man with a bald head and enigmatic facial features as unforgettable as his name. I’ve never seen him wearing anything other than a suit, and I’ve seen him a handful of times over the past few years, always at law or bioethics conferences that somehow address ethical issues around end of life care. He exudes the sense that he has that rare ability to be in more than one place at a time. Pope is director of the Health Law Institute at Hamline University and an adjunct professor at the Australian Centre for Health Law Research at Queensland University of Technology. He adjuncts at Albany Medical College and is a visiting professor at St. Georges University. Pope also runs the Medical Futility Blog, a site with work-a-day formatting and outdated fonts that is nonetheless an indispensable clearing house for news and updates on end of life legislation, litigation and initiatives. Which is why I follow what he writes and blogs religiously.

For those of us with at least one foot in religious studies, lawyers’ approaches to religion can be exasperating; often the pidgin non-fluency with which these professionals approach religion and all of its ways within American society can be sadly rudimentary. As defined in this discipline, religion often looks like a monolithic fortress, with every self-identifying member besieged inside, or worse, like a banal box of Kleenex that believers (and the rest of us!) avail themselves of when we’re choked up. So when I got wind of publication, by Cambridge University Press, of Law, Religion and Health in the United States, a book that came out of the Petrie-Flom Center Annual Conference at Harvard Law School, I immediately printed out Pope’s chapter, ran a bath, and jumped in.

I was at the Petri-Flom Conference last May and I found it, yes, exasperating.* Lawyers rarely define “religious”; rather they prefer to defer to listeners’ existing understanding of what religious means. It’s like pornography, they assume we know it when we see it. This is especially true when they pontificate on religious exemptions. Their definitions make religion into everything or nothing, depending on the audience.

Religious exemptions typically work as a way to exclude individuals or groups from existing laws that violate or do not represent their religious beliefs. One example that I’ve written about extensively in this column is Catholic hospitals, which are not required to follow general medical practice because of their affiliation with the Roman Catholic Church. Such hospitals, although they serve a diverse swath of the general population, are not required to perform general medical procedures that the Church disagrees with, such as abortions to save the life of a woman. Last year, Tamesha Means sued the United States Conference of Catholic Bishops (USCCB) because the Michigan hospital, Mercy Health Partners, that she was taken to during a miscarriage dismissed her three times, despite danger to her health, rather than perform an emergency abortion. The case Means brought, in conjunction with the ACLU, was ultimately dismissed. The court, in essence, determining that Means’ conscience (and health) was secondary to the conscience of the USCCB, which writes the laws that govern all Catholic affiliated hospitals.

The political ramifications of the court’s decision—that the Catholic hospital was not required to provide the quality care Means deserved—are far reaching. The more than 600 Catholic hospitals in the country can continue to practice as they do. A decision in Means’s favor would have acknowledged that religious exemptions should protect individual beliefs, rather than those of doctrinal entities. It is the politics of the decision—in effect setting Catholic organizations, indeed the beliefs of the bishops themselves, above the health of individuals—that is most alarming.

In legal discourse, “religion” is often shorthand for a privileging of particular denominations (nobody but nobody wants to grant, say, The Church of Stop Shopping an exemption ever) or the privileging of religious adherence above all other social or legal factors (as if a Catholic or a Protestant is firstly adherent to their faith’s doctrine, above all else…in Means’ case, even her own health). Nor are the ways in which believers inhabit their faith ever addressed; dissent, individual conscience, coercion, and social influence all get folded into that religion check box. The inference is then that religious exemptions from any type of law or medical practice exist to protect believers and that those believers are unswayingly defined by their faith’s doctrine, as espoused by their faith’s leaders. But we all know in our daily lives that religion is a many-splendored and distorted thing: it can command authority or represent our best selves, it can legitimize narrowly-held views or reek of authoritarianism. And it can mask or over-emphasize individual beliefs quicker than you can say, “Catholics believe in transubstantiation.”

Pope’s chapter in Law, Religion and Health in the United States, “Brain Death Rejected: Expanding Legal Duties to Accommodate Religious Exemptions,” is a mild case in point of how de-contextualizing “religious exemption,” pulling faith out onto the front mat to stand alone, distorts larger issues, be they political, emotional, cultural, systemic or whatever. I don’t say this lightly. I came away from his chapter convinced that he was right. But I think I can concede the win while at the same time arguing that the conclusion Pope draws is wrong. Let me explain.

In “Brain Death Rejected,” Pope argues that, while only four states have religious exemptions for brain death, “other states should enact similar accommodation requirements.” Brain death, as I’ve written elsewhere and elsewhere, means that all function in the brain has ceased to occur. The heart and lungs may be kept in operation via a respirator but that oxygen is not going to rehabilitate dead brain cells. No study or test has ever shown that brain cells can recover once they’ve died. And yet, some families (Pope outlines a few cases that have occurred in Michigan, Washington and Massachusetts) refuse to accept that death has occurred so long as the heart and lungs are functioning, even if they are made to do so by machines.

New Jersey’s exemption states, according to Pope, that a patient can be kept on physiological support “on the basis of information in the individual’s available medical records, or information provided by a member of the individual’s family or any other person knowledgeable about the individual’s personal religious beliefs that such a declaration would violate the personal religious beliefs of the individual.” That’s a lot of room for projection of a patient’s belief. None of the exemptions define religion (rightly I would say), which leaves too much room for other concerns to be lumped under the category. And California’s exemption states that objections to support removal need not be religious or moral. The language, in all cases, ranges from demanding indefinite support to suggesting that families have time to let the situation catch up with them.

Pope briefly analyzes brain death as a definition and recounts its provenance in medical ethics and law. He clearly outlines the exemptions in the four states that currently have them—New Jersey, New York, California and Illinois—and he tells us how they work. He concludes that 1.) There are millions of Americans who find the “imposition of a ‘brain death’ standard violates strongly held beliefs about the meaning of death,”** 2.) Many health care facilities in the country already voluntarily honor religious objection to the brain death definition, 3.) Yet, states do not always comply with patients’ requests, 4.) While four states already have working religious exemptions to brain death, and 5.) “Expanding accommodation would not be disruptive.”

There are reasons why all 50 states acknowledge brain death as death: no patient, unless wrongly diagnosed, has ever recovered from a brain death diagnosis; brain death is not brain damage, which can include those in a persistent vegetative state (an active brain stem) like Terri Schiavo’s diagnosis; and the grueling care required of healthcare workers, doctors, nurses and families for brain dead bodies is extraordinary and heartbreakingly superfluous.

Our healthcare system is, rather frankly, a bloody mess. Poor communication, grief, “pro-life” politics, distrust of the medical system, ideological medicine, as practiced in Catholic hospitals (which do acknowledge the brain death standard, by the way), faulty language skills and a host of other on-the-ground horrors can too readily be dumped into the category of “religious,” causing traumatized families to hope beyond hope, to suspect hospitals of wrongdoing, to be ideologically swayed into claiming whatever cause will prevent their loved one from being removed from a respirator.

In theory, I agree with Pope: all patients and their families should be able to live out their faith, in a hospital room or anywhere. But my concern with this position is that “religious exemption” is being used as a cover for so many inadequacies and misunderstandings —about healthcare communication and delivery, about the limits of medicine, about grief and trauma, that they become a politicized and legalized default for other factors. Factors that have very little to do with “religion.”

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*When I asked one presenter why he thought that the refusal by an Amishman to comply with an EPA standard qualified as a religious exemption case, the presenter responded with a curt, tautological reply: because the Amishman was Amish

**His footnote for this sentence reads, “I do not distinguish deeply held moral beliefs from religious beliefs regarding DDNC.” DDNC refers to “determination of death by neurological criteria,” or brain death

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Past “The Patient Body” columns can be found here.

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Ann Neumann is a contributing editor at The Revealer and Guernica magazine and a visiting scholar at The Center for Religion and Media, NYU. Neumann is the author of The Good Death: An Exploration of Dying in America (Beacon Press).