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Dead in California, Alive in New Jersey
Neurologists Seek Nationwide Consistency in Policies for Determining Brain Death

Article In Brief

Neurologists are proposing a revised definition of brain death in response to ambiguity, variability in standards, and legal cases challenging the definition in courts nationwide.

In the context of multiple challenges to the Uniform Determination of Death Act (UDDA) in state legislatures and courts around the country, as well as ongoing public confusion about what constitutes brain death, a group of neurologists with expertise in neurologic death and bioethics have issued a new paper calling for the development of a revised UDDA. At press time, their proposals were scheduled to appear in the December 24, 2019, issue of the Journal of Law, Medicine and Ethics and the December issue of Annals of Internal Medicine. The proposal follows a January 2019 AAN position statement calling for uniform brain death laws, policies and practices, published in the January 2, 2019, online issue of Neurology.

Originally drafted in 1981 by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, the UDDA states: “An individual who has sustained either 1) irreversible cessation of circulatory and respiratory functions or 2) irreversible cessation of all functions of the entire brain, including the brainstem, is dead. A determination of death must be made in accordance with accepted medical standards.”

State Standards Vary

This standard definition of death by neurologic criteria was adopted in every state, but only 36 incorporated the complete language of the UDDA into their definitions of death.

“There is ongoing confusion about death by neurologic criteria—medical standards used to determine it vary, public acceptance of it is inconsistent, and responses to family objections to it have ranged from continuation of organ support indefinitely to unilateral discontinuation of organ support,” noted the authors of the new proposal, led by Ariane Lewis, MD, associate professor in the departments of neurology and neurosurgery at NYU Langone Health in New York, who is also a co-author of the AAN position statement. “Because of medicolegal variations, a person could be considered ‘dead’ in one state and ‘not dead’ in another.”

These circumstances have contributed to a number of difficult situations involving patients who have been declared brain dead, only to have their parents or other family members challenge the medical diagnosis of brain death. Perhaps the best known case involves Jahi McMath, a California teenager who was declared brain dead after experiencing cardiac arrest following a tonsillectomy in 2013.

Three independent neurologists verified the diagnosis of brain death, but her parents objected, and after a protracted court battle, they moved their daughter to a rehabilitation facility in New Jersey, which is presently the only state to allow religious objection to a declaration of death on the basis of neurological criteria.

On June 22, 2018, an attorney for the family issued an announcement that McMath had died from cardiopulmonary causes. Nearly five years after being declared legally dead in California, McMath was also declared dead in New Jersey.

New Legal Challenges

Two cases now moving through the courts, Fonseca vs. Smith and Lowry vs. Beaumont Health System, seek to challenge the constitutionality of the UDDA. In the first case, Jonee Fonseca's baby son, Israel Stinson, was pronounced brain dead by physicians at several hospitals after an asthma attack in 2016. The hospitals' decisions were upheld by the US District Court in 2017, and Fonseca appealed to the 9th US Circuit Court of Appeals, where arguments were held in December 2019. Fonseca's attorney argued that the California Uniform Determination of Death Act gives doctors the ability to act as “both judge and executioner.”

In the second case, LaShauna Lowry sought a court order to prevent Beaumont Health System in Michigan from removing her teenage son, Titus Cromer Jr., from organ support after he experienced an undisclosed brain injury in October 2019. Testing showed no brain activity, including in the brainstem, and Beaumont physicians pronounced Cromer dead on October 24. He has remained on organ support since then as motions have made their way through the court system; at press time, the case was before the US District Court in Detroit.

Several states, including Arizona, South Dakota, Kansas and Missouri, have recently passed versions of “Simon's Law,” which requires parental notification before a do-not-resuscitate order is placed on a minor's medical chart. It also gives a parent or legal guardian the right to transfer the child to another facility if they disagree with the order. (The law originated in Missouri after the death of 3-month-old Simon Crosier in 2010.)

Meanwhile, a Michigan lawmaker, Joseph Bellino, is drafting legislation that would take this law one step further. Dubbed “Bobby's Law” after Bobby Reyes, who was declared brain dead after an asthma attack in September 2019, it would also allow parents or a legal guardian to defer for an unspecified period the apnea test required to determine brain death.

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“There is ongoing confusion about death by neurologic criteria—medical standards used to determine it vary, public acceptance of it is inconsistent, and responses to family objections to it have ranged from continuation of organ support indefinitely to unilateral discontinuation of organ support.”—DR. ARIANE LEWIS

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“These legal maneuvers represent an exercise in false hope. Death is a uniform biological reality that occurs from irreversible loss of either circulatory function or brain.”—DR. JAMES A. RUSSELL

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“We hope that other states will follow suit, adopting the RUDDA and the AAN guidelines to ensure consistent practice and legality of brain death throughout the United States. Ideally, instead of a state-by-state patchwork, we would have a federal standard, but that may be more challenging.”—DR. DAVID M. GREER

“These legal maneuvers represent an exercise in false hope,” said James A. Russell, DO, FAAN, of Lahey Hospital and Medical Center in Burlington, MA, past chair of AAN's Ethics, Law and Humanities Committee, and a co-author of the AAN position statement.

“Death is a uniform biological reality that occurs from irreversible loss of either circulatory function or brain,” Dr. Russell said.

“In the case of circulatory arrest, at some point, medical professionals who are trying to resuscitate the patient recognize that the ability of the heart to perfuse other organs is irreversibly lost and declare that patient dead. They are not required to identify that every last cell in the heart is dead, nor do they have a means of doing so, but they know that heart will never be restored to its normal state and without artificial support, the patient will die.

“Consent from the family is not required before the resuscitation team stops resuscitating that patient. But with neurologic death, these proposals seek to handcuff the medical profession from making a similar determination that the brain as a whole has ceased to function irreversibly.”

Refining the Definition of Neurologic Death

Nevertheless, these lawsuits and legislative efforts have highlighted some deficiencies with the UDDA, said Dr. Lewis—and that's what the proposed revised UDDA (RUDDA) seeks to remedy, both with a more detailed definition of brain death as well as additional guidance regarding how such determinations must be made, and what is required in terms of family notification prior to reaching a determination of brain death. [See “Proposed Revised Uniform Determination of Death Act.”]

“The UDDA's current language stipulates that declaring death by neurologic criteria requires irreversible cessation of all functions of the brain, including the brainstem,” Dr. Lewis explained.

“Some people argue that patients who have residual hormonal functions, such as menstruation and maintaining a normal salt-water balance in the body, which are regulated in part by hormones released from the brain, should not be able to be legally declared dead by neurologic criteria.”

That was part of the argument posed by the family of Jahi McMath, who entered puberty and began menstruating after being declared brain dead. In fact, multiple studies have demonstrated that hypothalamic and pituitary functions persist in 10-91 percent of people declared dead by neurologic criteria.

“We don't require every cardiac cell be dead for the organ as a whole to be dead,” Dr. Lewis said. “In some brain-dead individuals, there are nests of cells that do retain viability for a short period. There's a distinction between the death of every cell and the death of a brain as a whole, even if some functions are still maintained for a time.”

“That's why we propose making the definition clearer as to what brain function must be lost, rather than using the vague phrase ‘all functions,’” she said.

The UDDA also does not specify which medical standards should be used to determine death by neurologic criteria; under the RUDDA, the guidelines of the AAN and those jointly developed by the Society of Critical Care Medicine (SCCM), American Academy of Pediatrics (AAP), and Child Neurology Society (CNS) are designated as the accepted medical standards, but state boards of medicine have the authority to review revisions of their guidelines as needed.

Finally, since the UDDA does not address whether consent is required before a determination of death by neurologic criteria, court rulings on this question have been inconsistent. The RUDDA aims for consistency by stating that such notification should be pursued but is not mandatory. “Our hope is that the RUDDA will gain traction and be formalized into law by individual states,” said Dr. Lewis.

Seeking National Consistency

In 2017, Nevada amended its UDDA law and became the first state in the nation to stipulate that a determination of death is a clinical decision that does not require familial consent and that guidelines issued by the AAN in 2010 for adults and the SCCM/AAP/CNS guidelines issued in 2011 for children are the appropriate standard for determining neurologic death.

“Not only did they adopt the AAN's existing guidelines, but future iterations as well, which was very forward-thinking,” said David M.Greer, MD, FAAN, chair of the department of neurology at Boston University School of Medicine and chief of neurology at Boston Medical Center, and also a co-author of the AAN position statement.

“We hope that other states will follow suit, adopting the RUDDA and the AAN guidelines to ensure consistent practice and legality of brain death throughout the United States. Ideally, instead of a state-by-state patchwork, we would have a federal standard, but that may be more challenging.”

It's not just states that are inconsistent. Dr. Greer noted that hospitals still vary in their adoption of the AAN's guidelines on determination of death by neurologic criteria. In a 2016 review published in JAMA Neurology, evaluating 508 unique hospital policies representing the majority of hospitals in the United States that would be eligible and equipped to evaluate brain death in a patient, significant variability was found across all five categories of data, such as specifying all aspects of the clinical examination and apnea testing, and specifying appropriate ancillary tests and how they are to be performed.

He advised that hospitals adopt the Neurocritical Care Society's Brain Death Toolkit as an educational resource for any professionals involved in the determination of death by neurologic criteria. “It includes a web-based online course that takes only about an hour to complete, covering details such as what ancillary testing should show, how to ensure you've satisfied every prerequisite, and what documentation is necessary,” Dr. Greer said. “It also aggregates a number of other useful resources.”

Dr. Russell noted that significant harm can come from continuing to maintain neurologically dead patients on organ support.

“First, if that patient has been assessed for brain death compliant with these recognized criteria, there has never been a case where such a patient has woken up and started breathing again. There is no chance. That's false hope, which is harmful not only to the family but to the medical team. There is a tremendous amount of moral distress in ICUs among nursing staff forced to care for people whom they recognize are dead. We are also protracting the grief process for the family and denying them the closure that has to occur.”

Proposed Revised Uniform Determination of Death Act

The proposal for the Uniform Determination of Death Act stipulates that:

  • An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of functions of the entire brain, including the brainstem, leading to unresponsive coma with loss of capacity for consciousness, brainstem areflexia and the inability to breathe spontaneously, is dead.
  • (b) A determination of death must be made in accordance with the applicable guidelines set forth in (1) ‘Evidence-based guideline update: determining brain death in adults: report of the quality standards subcommittee of the American Academy of Neurology,’ published June 8, 2010, by the American Academy of Neurology, or (2) ‘Guidelines for the determination of brain death in infants and children: an update of the 1987 task force recommendations,’ published January 27, 2012 by the Society of Critical Care Medicine, American Academy of Pediatrics and Child Neurology Society, or (3) subsequent revisions of these guidelines that are recognized by the Board of Medicine to be accepted medical standards.
  • (c) Reasonable efforts should be made to notify a patient's legally authorized decision-maker before performing a determination of death by neurologic criteria, but consent is not required to initiate such an evaluation.

Link Up for More Information

• Russell JA, Epstein LG, Greer DM, et al; for the Brain Death Working Group. Brain death, the determination of brain death, and member guidance for brain death accommodation requests: AAN position statement https://n.neurology.org/content/92/5/228. Neurology 2019; Epub 2019 Jan 2.
    • Lewis A, Cahn-Fuller K, Caplan A. Shouldn't dead be dead? The search for a uniform definition of death https://journals.sagepub.com/doi/abs/10.1177/1073110517703105. J Law Med Ethics 2017;45(1):112–128.