Ethical Issues and the Public Understanding of Brain Death

James Russell, DO, MS

Earlier this week, the American Academy of Neurology (AAN) announced that it has a goal of achieving nationwide consensus on the determination of brain death.¹

Despite the lack of a known case of inaccurate determination of death with the return of any brain function, such as consciousness, brainstem reflexes, or breathing, the state of Nevada remains the only US state which has adopted legislation requiring the use of the AAN guidelines as medical standard, authorized by the model Uniform Determination of Death Act (UDDA).

Although some have been critical of Nevada’s law. In April 2018, a group authored a perspective in the Journal of Bioethical Inquiry regarding their concern surrounding the amendments to the Nevada law.² They wrote that “even though the primary purpose of the UDDA is to ensure that all functions of a person’s entire brain have ceased, the AAN guidelines do not accurately assess this.”

Additionally, they pointed to Nevada’s desire to resolve uncertainty following a high-profile case by amending their legislation to include the AAN guidelines, noting that “in doing so, Nevada has raised more legal issues than it has solved, particularly given its impact on patient and religious rights.”

To further address this opposing position of the Nevada law, the AAN’s position on brain death, and what clinicians need to know in regard to determining it, James Russell, DO, MS, neurologist, Lahey Hospital and Medical Center, and an author of the position statement, spoke with NeurologyLive^®.

NeurologyLive^®: Some have called into question the ethics of Nevada’s amendment to the UDDA. Are the ethics of brain death a concern of the AAN?

James Russell, DO, MS: Let me speak to the Nevada situation because, in a number of different ways, it’s ironic that you bring it up. The uniform acceptance of the UDDA in 1981 authorized the medical profession to identify and provide the medical standards by which brain death was determined. In short, basically, the UDDA report equated brain death with cardiopulmonary death. That charge was sent out, and in response to that, organizations like the American Academy of Neurology and the 3 pediatric components groups that I mentioned developed medical or clinical standards by which brain death would be determined. To the best of our knowledge, when complied with, they’re uniformly accurate as they obviously need to be.

What’s missing from this, however, is the recognition by different states that these are, in fact, the medical standards by which brain death is determined. The UDDA authorized the medical profession to provide these standards and the medical profession did so, but individual jurisdictions never passed any laws that said, “Yes, these are the medical standards.”

I think, without any doubt, that the absence of this is what has led to some of the difficulties in resolving these high-profile cases. Now specifically, and ironically, one of the high-profile cases took place in Nevada with a young woman by the name of Aden Hailu whose family contested the diagnosis. It made it all the way to the Nevada Supreme Court, and we became aware of the opinion of the Nevada Supreme Court which made reference to the AAN Brain Death guidelines. What they said was that the lower courts had failed to prove that the AAN guidelines are the medical standard in Nevada by which brain death is determined. They didn’t criticize the guidelines—they simply pointed out that the lower courts had failed to prove that they were indeed this medical standard, which was a concern to us.

Ironically, this decision came full circle, and in 2017, Nevada actually passed legislation that recognizes the existing adult and pediatric guidelines for the determination of brain death to be the medical standard by which that’s determined. But that’s the only state in which that has occurred, and one of the goals of the Brain Death Working Group is to, hopefully, figure out some way to get other jurisdictions to do exactly the same, so that some so that these difficult cases—which I don’t think serve anybody very well—perhaps are resolved in a more constructive fashion for everybody’s benefit.

What are the key factors for the clinician community to know in regard to determining brain death?

The first point, number 1: That not everybody, but the majority, of members of the legal and medical community, not only in this country but many other countries throughout the world do consider brain death as the biological equivalent of cardio-pulmonary death. In fact, all US jurisdictions have adopted the UDDA either verbatim or in some variation thereof. So, brain death is legally recognized as death in all US jurisdictions.

Number 2: The determination of brain death is dependent on proving the irreversible loss of all functions of the brain and the brain stem. It does not require that you prove that every neuron within the brain is irreversibly injured, any more than cardio-pulmonary death requires the proof that every myocardial cell is irreversibly injured. It simply requires proof that the brain, as an entire organ with all of its functions, are irreversibly injured.

Number 3: The determination of brain death is first and foremost a clinical diagnosis and that the role of ancillary testing is to serve as a surrogate means of assessment when a clinical assessment is not possible. There may be exceptions to that, but that’s the basic rule.

Number 4: Although the responsibility to determine brain death falls under the purview of the medical profession as authorized by the UDDA, the authority to determine brain death or to withdraw organ-sustaining technology may be superseded by legal considerations. In fact, there are 3 states that recognize individuals’ right to request limited accommodation in withdrawing organ support. In a 4^th, New Jersey, the law recognizes an indefinite right for a family to allow maintenance of organ sustaining technology despite a medical determination of brain death, based, I believe, largely, on religious grounds.

Is there any way to improve the public’s understanding of brain death as an equivalent to cardiopulmonary death?

There are so many different ways I can answer that. Obviously, with a subject matter like this, that is so emotionally charged, to suggest that there could ever be unanimity of opinion on this would be unlikely. I don’t think that will ever occur. The people who do not fully endorse brain death conceptually as equivalent to cardiopulmonary death, or the accuracy of its determination, don’t just lie within the lay public—there are many philosophers and many physicians and bio-ethicists, some of whom I have great respect for, who have differing opinions. That’s probably the nature of the human condition.

All we can do is to educate those who have misunderstandings based upon lack of appropriate knowledge. We can only work to make sure that the processes by which brain death is determined are done compliantly, uniformly, correctly, and accurately to make sure that we get it right 100% of the time, which is important. Hopefully, we can appeal to the pragmatic aspects of this, one being that I don’t think we as a society can tolerate a negotiated standard for what death is or is not, even if we disagree on what that standard is. Hopefully, we can all agree that we can’t function as a society unless we figure out a standard that we can all agree to.

The other thing—and I’m coming at it as someone that has an interest in biomedical ethics—that sometimes gets lost in this discussion by those who oppose the brain death concept, is the question: What would the individual who is in the ICU want if they had been in a position to speak for themselves, would they want to be maintained in what might well be an indefinite state of unconsciousness and unawareness, with the arguably remote hope that somehow, someway, they could be returned to a quality of life that they want? The voice of the individual, the victim if you will, seems to get lost in these debates.

REFERENCES

1. Russell JA, Epstein LG, Greer DM, Kirschen M, Rubin MA, Lewis A. Brain death, the determination of brain death, and member guidance for brain death accommodation requests. Neurology. Published online January 2, 2019. doi: 10.1212/wnl.0000000000006750

2. Yanke G, Rady MY, Verheijde JL. Ethical and legal concerns with Nevada’s brain death amendments. J Bioethic Inq. 2018;15(2):193—198. doi: 10.1007/s11673-018-9852-y