What does it mean to be dead, and who gets to decide?
Last October, Titus Cromer Jr. was a junior at the University of Detroit Jesuit High School. His upbeat energy made him popular at school, where he was a member of the wrestling and football teams. Titus loved listening to Drake and Michael Jackson, and was a big Michigan Wolverines fan. He hoped to one day become an aerospace engineer.
But on October 17, a serious brain injury brought him instead to Beaumont Hospital for emergency treatment. A week later, an EEG test showed no electrical activity inside his brain, and a CT angiography scan confirmed a lack of cerebral blood flow. The hospital declared Titus brain dead and wanted to remove life support. His mother, LaShauna Lowry, disagreed. She believed that Titus’s brain needed time to heal and recover, and that withdrawing life support would be premature. “I’ve had discussions with others in similar situations,” she said, “discussions with doctors that have seen people heal, and you have a mother’s intuition. And then there’s God. I've had too many confirmations that this is not the end.”She wanted Titus to rehabilitate in a long-term care facility, but in order to be transferred he needed a tracheostomy and insertion of a feeding tube. Beaumont hospital refused to allow its physicians to operate on a patient they considered dead.
Under Michigan’s Determination of Death Act, a physician or nurse may pronounce a person dead when they have sustained irreversible cessation of either (a) both circulatory and respiratory functions, or (b) all functions of the entire brain, including the brain stem.[2] This statute is modeled after the Uniform Determination of Death Act (UDDA), which was drafted by the National Conference of Commissioners on Uniform State Laws in 1981, and approved by both the American Medical Association and American Bar Association that same year. The UDDA defines death by neurological criteria as “irreversible cessation of all functions of the entire brain, including the brain stem,” the determination of which is to be made “in accordance with accepted medical standards.”[3] Brain death is legally recognized in all U.S. jurisdictions, and most states have enacted statutes modeled on the UDDA.[4] Upon determination of brain death, caregivers have no duty to provide further care, and life support is generally withdrawn.
But what happens when the patient’s family or representative raises a religious objection to the declaration of brain death? The answer varies widely by state. Most states do not allow for religious exemptions in such cases.[6] In these states, the patient is legally dead upon the determination of brain death, at which point the hospital has no legal obligation to provide continuing physiological support. The hospital may withdraw life support over the objections of the patient’s family.
Three states allow for reasonable accommodations on the grounds of religion. California requires hospitals to continue providing cardiopulmonary support for a “reasonably brief period” to allow the family to gather at the patient’s bedside.[7] Hospitals in California must also make “reasonable efforts” to accommodate religious and cultural concerns voiced by the patient’s family.[8] New York requires that hospitals make “reasonable accommodation of the individual’s religious or moral objection to the determination as expressed by the individual” or their next of kin.[9] Illinois requires that hospitals “take into account the patient’s religious beliefs concerning the patient’s time of death.”[10]
The only state that allows for religious exemption to the determination of brain death is New Jersey. The New Jersey Declaration of Death Act states that death by neurological criteria “shall not be declared” if it violates the patient’s personal religious beliefs.[11] The exemption is not used frequently, in part due to the relative infrequency of true brain death.[12] However, it is important for two reasons.
First, it recognizes the legitimacy of minority religious beliefs. Many religious groups do not subscribe to the concept of brain death. Some Orthodox Jews, for example, believe that the breath is the spirit of life, so that as long as the individual breathes, she is alive. Other religious groups that object to the concept of brain death include Japanese Shinto, as well as certain Native American, Buddhist, and Muslim sects.[13] Patients who are neurologically “dead” will often continue to perform the bodily functions of life—they may fight infections; heal wounds; metabolize food; grow and mature; maintain energy balance, body temperature, and electrolyte homeostasis; undergo hormonal changes; initiate cardiovascular response to surgical incisions; and even gestate a fetus.[14] For these reasons, it should not come as a surprise that many patients and families might not accept a declaration of death based on neurological criteria alone.
Second, the religious exemption allows for greater patient autonomy and fosters trust in the medical system. The declaration of brain death does not exist in a vacuum. It is but one of a patient’s many interactions with the medical system throughout her lifespan. Many families might reject the declaration of brain death because of past experiences of discrimination or racism at the hands of medical professionals, as well as religious beliefs. The brain death itself may have resulted in part from race-based neglect, as in the recent case of Jahi McMath, a thirteen-year-old African American girl declared brain-dead after a routine tonsillectomy caused cerebral hemorrhaging.[15] Allowing for exemptions to the declaration of brain death acknowledges the racial and cultural context of these decisions, grants patients more autonomy, and thus builds trust in the medical system. Jahi’s parents, for example, had a bona-fide religious objection to the determination that their daughter was brain-dead, but in voicing this objection, they received significant resistance and hostile treatment from medical professionals and hospital administrators. Ultimately, they were forced to transport Jahi across the country to New Jersey in order to keep her on life support. Their fight for Jahi’s life threw the issue of medical racism into sharp relief and drove a wedge between Oakland Children’s Hospital and the surrounding community. In the words of Jahi’s mother, “If the hospital had been more compassionate, would we have fought so much?”
The UDDA has come under increasing attacks in recent years. While Titus Comer Jr. was successfully transferred to a long-term care facility, it took the advocacy and support of his mother, family, friends, community, and attorneys, as well as multiple restraining orders and an intense legal battle to secure his treatment. Other families have not been so successful. For example, Bobby Reyes, a 14-year-old Michigan boy declared brain dead after an asthma attack, was taken off life support last year against the wishes of his family.[17]
A similar event occurred in California in 2016 when the Children’s Hospital of Los Angeles forcibly removed life support from a brain-dead child, giving rise to the case of Fonseca v. Smith. Last month the Ninth Circuit heard oral arguments in the case, which seeks to declare the California Uniform Determination of Death Act unconstitutional.[18] Fonseca may fail on standing grounds. However, advances in life-sustaining technologies mean that more challenges to the UDDA are sure to come. State legislatures should reconsider the question of religious exemptions and accommodations in cases of brain death. The values of patient autonomy and respect for religious minorities demand it.
Footnotes
[1] https://www.freep.com/story/news/local/michigan/2019/11/19/titus-cromer-brain-dead-michigan-teen-life-support-beaumont-lashauna-lowry/4203196002/.
[2] http://www.legislature.mi.gov/(S(2wsbff0xhsrrt1cd50rghn13))/mileg.aspx?page=GetObject&objectname=mcl-333-1033.
[3] https://www.uniformlaws.org/viewdocument/final-act-with-comments-23?CommunityKey=155faf5d-03c2-4027-99ba-ee4c99019d6c&tab=librarydocuments.
[4] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4889813/#s6title; https://onlinelibrary.wiley.com/doi/full/10.1002/hast.954#hast954-sec-0040-title.
[5] This is also true in most jurisdictions, though states may differ in certain cases—for instance, if the individual declared brain-dead is pregnant. See, e.g. https://www.nytimes.com/2014/01/08/us/pregnant-and-forced-to-stay-on-life-support.html.
[6]https://www.tandfonline.com/doi/full/10.1080/01947648.2017.1385041?casa_token=j9rq2dDW8P8AAAAA%3A4TLxD3UbSF1dzqtMt3jAD1P5pCp867_h3ciDNfawrGAlyerDAw5ziUsioWkPok4A4aygNpT7HSKe.
[7] Cal. Health & Safety Code § 1254.4.
[8] Id.
[9] 10 N.Y.C.R.R. § 400.16.
[10] 210 Illinois Compiled Statutes 85/6.24.
[11] New Jersey Declaration of Death Act, N.J. Stat. § 26:6A-5 (1991).
[12] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6092846.
[13] https://www.tandfonline.com/doi/full/10.1080/01947648.2017.1385041?casa_token=j9rq2dDW8P8AAAAA%3A4TLxD3UbSF1dzqtMt3jAD1P5pCp867_h3ciDNfawrGAlyerDAw5ziUsioWkPok4A4aygNpT7HSKe.
[14] https://academic.oup.com/jmp/article-abstract/26/5/457/1046787.
[15] https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die; https://www.yolondawilson.com/blog/2018/3/28/brain-death-black-folks-and-bioethics; https://theconversation.com/why-the-case-of-jahi-mcmath-is-important-for-understanding-the-role-of-race-for-black-patients-99353.
[16] https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die.
[17] https://www.freep.com/story/news/local/michigan/2019/10/15/bobby-reyes-asthma-attack-life-support/3988758002.
[18] http://www.bioethics.net/2019/01/federal-appellate-court-hears-constitutional-challenge-to-udda-fonseca-v-smith.