The Death Exemption: Jahi McMath & the Right to Life after Death

Religious accommodations in medicine typically call to mind a pharmacist’s refusal to dispense birth control, a hospital’s refusal to provide abortion, or a parent’s refusal to vaccinate her child. In two states however, religious accommodations allow patients an exemption from death itself. The problem of religious opposition to legal “brain death” and what to do about it is currently playing out in the dramatic and tragic case of Jahi McMath.

Following cardiac arrest after a surgery for sleep apnea, 13-year-old Jahi McMath was declared brain dead by her doctors at Children’s Hospital Oakland in California in December of 2013. Children’s Hospital informed Jahi’s family, including her mother, Nailah Winkfield, of their intention to remove Jahi from her ventilator and suggested that they consider donating Jahi’s organs.

Death is widely accepted by medical communities and the public to mean the loss of either all cardio-respiratory functions or of all functions of the entire brain, including the brain stem. In the latter case, the patient may appear alive—in Jahi’s case, with the assistance of a ventilator she breathes, has a beating heart, and has healthy skin and organs—yet still be considered “dead” with no constitutional or statutory right to life. Once someone is legally dead, there is no obligation for a hospital to continue life support or an insurance plan to pay for care, regardless of their family’s wishes.

Despite the doctors’ pronouncement, Ms. Winkfield adamantly objected to the removal of Jahi’s life support. She argued that her daughter was in fact still alive, due in part to her religious belief that death occurs only as the loss of cardio-respiratory functions, regardless of brain activity or the lack thereof.

Ms. Winkfield went to court to try and keep Jahi on a ventilator, and to request that Children’s Hospital provide her with a tracheotomy and feeding tube. Superior Court Judge Evelio Grillo found that Jahi met California’s criteria for brain death, and therefore Children’s Hospital could remove her ventilator. However he stayed his order so as to keep Jahi on life support while Ms. Winkfield appealed the ruling.

Following negotiations between Ms. Winkfield and Children’s Hospital that were overseen by a U.S. Magistrate Judge, the hospital finally agreed to allow Jahi to leave the hospital…but only if Ms. Winkfield consented, despite her opposition, to the completion of Jahi’s death certificate.

Under normal circumstances, the County Coroner would have then completed an investigation and released Jahi’s body to next of kin for burial. Instead, under the terms of the agreement, Jahi was transferred from Children’s Hospital to the Alameda County Coroner (presumably while remaining on life support) and then back to a healthcare facility—this time across the country, in New Jersey.

Why to New Jersey? Because under that state’s religious accommodation law, Jahi is still alive. A New Jersey law on brain death states that the death of an individual:

“Shall not be declared upon the basis of neurological criteria … when the licensed physician authorized to declare death, has reason to believe…that such a declaration would violate the personal religious beliefs of the individual. In these cases, death shall be declared, and the time of death fixed, solely upon the basis of cardio-respiratory criteria.”[1]

Under this exemption, because of Jahi’s religious beliefs doctors in New Jersey may not remove her ventilator. Furthermore, as a living person she is able to remain on health insurance, relieving her family of enormous medical costs.

Two years after moving to New Jersey, however, Ms. Winkfield wants to bring Jahi back home to California—without, of course, risking the termination of her ongoing medical support. Two weeks ago, a federal suit was filed on behalf of Jahi McMath, now 15, requesting that California invalidate her death certificate. While the complaint focuses on demonstrating that Jahi does have neurological activity, it also argues that the death certificate violates Jahi and her mother’s constitutional and statutory religious rights.

Ms. Winkfield and Jahi state that they are “Christians with firm and sincerely held religious beliefs that as long as a person’s heart is beating, that person is alive.” According to the complaint, Jahi’s death certificate, by permitting California doctors to withhold all medical care, makes it impossible for Jahi and her mother to exercise their religion, which requires “the provision of medical treatment to all persons with a spontaneous heartbeat.” Therefore, they argue that the existence of the death certificate is a violation of their Free Exercise rights under the First Amendment. The complaint also alleges a violation of the Religious Land Use and Institutionalized Persons Act (RLUIPA), claiming that the death certificate, which was issued while Jahi was “institutionalized” in Children’s Hospital, imposes a “substantial burden” on her religious exercise and is not narrowly tailored to further a compelling government interest.

Jahi’s First Amendment claim has little merit, as California’s laws on brain death are neutral laws of general applicability with no intent to stifle religious belief or practice, and they are not being applied in a discriminatory manner. Her RLUIPA claim is also likely to fail, as RLUIPA has never been held to apply to a private, non-psychiatric hospital,[2] and because even if Children’s Hospital were covered by RLUIPA the action that she is challenging—the issuance of her death certificate— was taken by the State of California, not by Children’s Hospital itself. Additionally, Ms. Winkfield eventually agreed to the creation of the death certificate.

Despite the weakness of Jahi’s legal claims, they still raise the interesting question of whether Jahi’s religious objection to brain death should be honored by the state of California as a matter of public policy, as it is in New Jersey. Where a religious accommodation poses a clear threat to an individual or to public health—for example, where medical professionals deny necessary care, or in the case of vaccine exemptions—the concern for third party harms should generally outweigh any burden on religious liberty. No exemption should be allowed in such circumstances.

In Jahi’s case, however, any harms imposed on third parties are more tenuous. So long as she is not cared for in a facility where resources are scarce (and therefore her presence may divert a bed or equipment from a patient with a better prognosis), giving Jahi a religious exemption would not clearly harm any identifiable person. While her medical providers may feel some discomfort in or even opposition to providing care to a brain dead patient, as in the reproductive health context a provider’s personal beliefs should rarely trump a patient’s medical wishes.

Even if there is no direct and specific third party harm, however, allowing a religious exemption for brain death would certainly impose a burden on California’s medical system as a whole. Should this burden outweigh the interest of Jahi and her family, and others like them? Need state or private insurance plans cover the potentially extraordinary costs of Jahi’s care and, if so, must they also cover after-death care for persons with secular objections to “brain death”?  Allocating the cost of Jahi’s care may be the trickiest part of this complicated issue, though it is barely mentioned in the complaint.

I’m not prepared to throw my support for or against religious exemptions to “brain death” without more research and thought, except to say that Jahi’s story is a case in which the burden to the individual seems severe, and the third party harms, particularly if no cost is imposed on the State, are attenuated. Even if Jahi’s legal claims fail, it will be interesting to see whether her case incites a call in California and elsewhere for a “death exemption,” and if so, who will be required to pick up the tab.

[1] A similar, though less stringent rule exists in New York through a state regulation requiring hospitals to have a “written policy regarding determinations of death” including “a procedure for the reasonable accommodation of the individual’s religious or moral objection to the determination.” Interestingly, these religious exemptions to legal “brain death” were motivated by a concern for the large numbers of Orthodox Jewish residents in New York and New Jersey, some of whom reject the concept of “brain death” as death.
[2] RLUIPA has been applied in certain psychiatric hospitals and mandated treatment programs. See, e.g., Sokolsky v. Voss, 2009 WL 2230871 (E.D.Ca. 2009). Interestingly, the parents of Terri Schiavo, the subject of an infamous legal battle over artificial life support, made a RLUIPA claim similar to Jahi’s against the hospice where Ms. Schiavo being cared for. This claim was dismissed as the court found that they had failed to demonstrate the hospice was a state actor. See Schiavo ex rel. Schindler v. Schiavo, 357 F.Supp.2d 1378 (2005).