EXECUTIVE SUMMARY

There are growing calls for a uniform brain death standard, but court cases and in-hospital conflicts continue to increase. Variation in practices can:

• lead to loss of confidence in physicians’ ability to determine death;

• negatively affect organ donation;

• open the door to legal challenges.


Currently, Nevada is the only state with legislation requiring adherence to the American Academy of Neurology (AAN)’s evidence-based guidelines on brain death in adults. Now, the AAN is calling on U.S. legislators to require a uniform definition of brain death.1

James A. Russell, DO, FAAN, says the new position statement was “prompted by concerns that misperceptions originating from a number of high-profile cases might serve to undermine the public trust in brain death and in the accuracy of its determination.” The AAN addressed this concern by endorsing:

• uniformity in brain death determination training, institutional policies, and the Uniform Determination of Death Act position on brain death;

• the accuracy of existing adult and pediatric guidelines for determining brain death;

• the need for uniform legal recognition of current adult and pediatric guidelines as the accepted medical standards for the determination of brain death;

• providing guidance and support for AAN members when facing requests for accommodation.

“It is the hope of the AAN and the authors of this position statement that the content of the position will be considered valid and acceptable to all,” says Russell, lead author of the position statement and chair of the AAN’s ethics, law, and humanities committee. Looking forward, Russell says future developments may include:

• uniform brain death determination training programs, institutional policies, and practices;

• legal recognition of existing adult and pediatric guidelines for the determination.

“The hope is that the public trust in brain death and the accuracy of determination will be bolstered,” says Russell.

A Fundamental Question

While laws on many subjects diverge across jurisdictions, the question of who is alive and who is dead is too fundamental a question on which to permit inconsistency and uncertainty, according to Thaddeus Mason Pope, JD, PhD, director of the Health Law Institute and professor of law at Mitchell Hamline School of Law in St. Paul, MN.

“Nonuniformity reduces credibility and trust because it makes the determination of death seem more uncertain and fallible,” says Pope. Moreover, inconsistencies in the determination of death may increase public suspicion and negatively affect organ donation.

In several recent cases, people have challenged the determination of death. “As the issue gets more coverage in the media, public misunderstanding and mistrust grows,” says Pope. Meanwhile, the number of court cases and hospital-based conflicts continue to increase. “Some advocacy organizations are actively promoting and even funding challenges to the determination of death by neurological criteria,” says Pope.

Pope expects that other state legislatures will follow Nevada’s lead and amend their determination of death acts. “It may even be necessary to enact a federal statute to assure nationwide uniformity,” he says.

Care Quality Is Issue

The AAN recently published consensus statements endorsing the validity of brain death and their best practice standard of brain death in adults.2

“Yet opponents to brain death are becoming increasingly vocal and influential,” says James L. Bernat, MD, one of the paper’s authors. Bernat is an active emeritus professor of neurology and medicine at Geisel School of Medicine at Dartmouth and former director of the program in clinical ethics at the Dartmouth-Hitchcock Medical Center in Hanover, NH.

Bernat says the best defense of brain death is to “rigorously show why brain death is equivalent to human death using conceptual and scientific arguments.”

Despite best practice standards, there are still significant practice variations among U.S. physicians in how they determine brain death. Some of these variations are due to educational deficiencies, says Bernat. Some reflect personal or institutional practice preferences.

“This variation produces several problems,” says Bernat. “First, it is a problem in quality of care when physician practices vary significantly from best practice standards.”

Continued variation can cause observers — including judges — to question if the best practice standards are meaningful if they are not followed assiduously. Variation can also lead to the loss of confidence by the public in physicians’ ability to determine death.

“Opponents to the concept and practice of brain death can use the variation data to challenge the validity of brain death as a determination for human death,” notes Bernat.

Limited Accommodation

William D. Graf, MD, a pediatric neurologist at Connecticut Children’s Medical Center and the University of Connecticut in Farmington, says the two major ethical concerns in brain death determination relate to potential errors in diagnosis and unjustified medical treatment after death. Substantial progress has been made in unifying brain death determination guidelines since the Uniform Determination of Death Act was published, adds Graf.

“But because of some remaining inconsistencies among institutional brain death protocols in various states and hospitals, more needs to be done to assure the public about the validity and high reliability of brain death as a medical and legal diagnosis,” says Graf.

There are no known cases in which compliant application of the current adult and pediatric brain death guidelines led to inaccurate determination of death with return of any brain function, including consciousness, brain stem reflexes, or ventilatory effort. “After brain death, there is no ethical obligation to provide further medical treatment,” says Graf.

Currently, brain death is defined as the loss of all function in the entire brain and determined by qualified medical professionals using accepted medical standards for adult and pediatric patients. It is accepted as legal death in all U.S. jurisdictions. “These standards are currently widely accepted by the medical profession,” says Leon G. Epstein, MD, a pediatric neurologist at Northwestern University’s Feinberg School of Medicine in Chicago.

Regardless of legalities or scientific evidence, some will continue to be resistant to the concept of brain death or the method of its determination.

“After brain death determination, the medical profession needs to be respectful of requests for limited accommodation based on reasonable social, moral, cultural, and religious considerations,” says Epstein. Such requests must be based on the values of the patient, not those of family members or other surrogate decision-makers.

“Pluralism has its limits,” says Epstein. “The definition of those limits are determined by social, cultural, religious, political, and legal consensus.”

REFERENCES

1. Russell JA, Epstein LG, Greer DM, et al. Brain death, the determination of brain death, and member guidance for brain death accommodation requests: AAN position statement. Neurology 2019; Jan 2. pii: 10.1212/WNL.0000000000006750. doi: 10.1212/WNL.0000000000006750 [Epub ahead of print].

2. Lewis A, Bernat JL, Blosser S, et al. An interdisciplinary response to contemporary concerns about brain death determination. Neurology 2018;90:423-426.

SOURCES

• James L. Bernat, MD, Neurology Department, Geisel School of Medicine at Dartmouth, Hanover, NH. Email: bernat@dartmouth.edu.

• Leon G. Epstein, MD, Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago. Email: lepstein@luriechildrens.org.

• William D. Graf, MD, Department of Pediatrics, Division of Neurology, Connecticut Children’s Medical Center and the University of Connecticut, Farmington. Email: wgraf@connecticutchildrens.org.

• Thaddeus Mason Pope, JD, PhD, Director, Health Law Institute/Professor of Law, Mitchell Hamline School of Law, St. Paul, MN. Phone: (651) 695-7661. Email: thaddeus.pope@mitchellhamline.edu.