Committee stalemates over controversial changes to Brain Death Law

By Sara Buscher
Past Chairperson, EPC-USA

A draft of the revised Uniform Determination of Death Act (RUDDA) is headed to the Uniform Law Commission’s July 26 annual meeting for a First Reading. Possible actions could be to put this project on hold or to give the drafting committee further direction. It won’t be offered to the states this year.

This project began in response to those in the medical community who typically declare people brain dead. They asked the Uniform Law Commission to revise the UDDA to:

• Eliminate lawsuits by family members, especially by parents of children declared brain dead.
• Make it easier to ration medical care by declaring patients brain dead, especially those in Intensive Care Unit beds. 
• Make somewhat more organs available for transplantation.

The UDDA provides a shield from medical malpractice liability by granting doctors the right to declare living patients to be brain dead leading to the cessation of life-sustaining treatment. Brain death can be used to limit liability for medical malpractice by cutting off the costs of care for serious brain injuries.

An informal meeting between the Drafting Committee and 20 or so Commissioners was held on June 9. Because the Committee is stalemated, it has not voted. Instead language for the two camps is being presented and Commissioners are being asked to pick one. Usually draft uniform laws are recommended to the Commissioners after a drafting committee reaches a consensus. The Committee’s inability to arrive at a consensus reflects the lack of scientific evidence and disagreements within the medical community.

The Drafting Committee’s two options are:

• Option 1: Keep the existing UDDA which has not changed since 1980. It says: “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 brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”

OR

• Option 2: Revise (loosen) UDDA criteria and provide suggested, but not required, opt-out option language for those who don’t want the loosened criteria applied to them. Draft language follows later.

Of the available options, EPC and EPC USA support Option 1 provided it does not violate the dead donor rule with a brain death opt-out for patients and providers that could be exercised at any time just like informed consent can be modified or changed at any time. In fact, we believe that people currently have the right to decide how their deaths should be determined and have provided language to do so in our Life Protecting Health Care Power of Attorney, available at https://epc-usa.org/resources/

If you want to provide input to the Uniform Law Commission you can email a letter to Drafting Committee Chair Judge Samuel Thumma at sthumma@appeals.az.gov with a copy to Lucy Grelle at lgrelle@uniformlaws.com, asking that it be posted online. It should be sent no later than July 12.

Drafting Committee’s Language

The language for Option 2 follows.

Determination of Death

     (a) An individual is dead if the individual has sustained:

              (1) permanent cessation of circulatory and respiratory functions; or

              (2) permanent

                      (A) coma,

                      (B) cessation of spontaneous respiratory functions, and

                      (C) loss of brainstem reflexes.

     (b) A determination of death under subsection (2) must be made in accordance with accepted medical standards.

Accommodation

    (a) An individual may object to a determination of death under Section [brain death].

    (b) An objection under subsection (a) must be expressed in the individual’s medical records.

    (c) A health-care institution shall adopt a policy in a record that sets forth the reasonable efforts it will make to accommodate an objection under subsection (a). The policy must:

           (1) require the institution to comply with the individual’s choice that a determination of death not be made under Section [brain death]; and

           (2) provide that an objection must be made before beginning the clinical evaluation for the determination of death under Section [brain death]

The UDDA and Option 2 allow people to be legally declared dead who are alive.

A open letter to the Drafting Committee from by 107 experts says of the current UDDA: “Now it is widely accepted that brain dead bodies are biologically living organisms.”[1] Harvard ethicist Robert Truog M.D. says the central justification equating brain death with biological death is now known to be false.” It is well accepted that “brain death” was legally adopted to allow the supply of organs for transplantation. “Donation after circulatory death determination is not preferred, as this manner of death tends to render organs unusable…”

One of the Commissioners argued for a law that would treat people who are biologically alive as legally alive instead of using a quality of life (rationing on the basis of disability) philosophy. His concern was ignored, but not disputed.

“Brain death” is a label reflecting value judgments

Professor Thaddeus Pope says “…brain death is recognized as a value judgment instead of as a scientific truth.”^[2] The lack of scientific evidence shows up in several ways, particularly wide variation on standards in standards, misdiagnosis and racial disparities.

Lack of Scientific Evidence

The American Academy of Neurology (AAN) Guideline for determining brain death is the Drafting Committee’s favored “accepted medical standard”. (At one time they referred to it in a definition of the medical standard.) The AAN Guideline says the evidence supporting brain death determinations is severely limited. So, the AAN relies on the UDDA legal standard, not scientific evidence, for its brain death medical standards, saying in its Guideline: “because of the deficiencies in the evidence base, clinicians must exercise considerable judgment when applying the criteria in specific circumstances.” In other words, the Guideline allows its criteria to be overridden by clinical judgment.

Systemic Racism

It is fairly well known that organ donation and distribution discriminate on the basis of race. Blacks have the highest per capita rate of being declared brain dead of any race with whites being the lowest. Despite that, whites are well over 1.5 times as likely to get a transplanted organ as Blacks. The number of organ transplants performed on blacks in 2020 was 27.7 percent of the number of blacks currently waiting for a transplant. The number of transplants performed on whites was 47.6 percent of the number currently waiting.

Wide Variation in Medical Standards leads to Misdiagnosis

Brain death diagnostic procedures vary so widely that an AMA Journal of Ethics article says such inconsistency should not be tolerated; it will lead to more misdiagnosis and erode public trust. The author says the UDDA by designating “accepted medical standards” allows them to be set nationally, regionally and locally. “If we cannot promise robust and 100% accurate diagnosis of brain death, we cannot in good faith counsel families about organ donation, as to do so would violate the dead donor rule.”

Under the current UDDA, from 50% to 84% of brain dead people are misdiagnosed; how many could recover is unknown. The tests that would identify these people are not run. Once these people are declared brain dead, insurance coverage stops, life-sustaining treatment is withdrawn[3] and they die. Both Options 1 and 2 ignore this.

Issues Raised by the Draft Language

The language itself raises some issues and goes further than you would think for circulatory and respiratory death as well as brain death. Remember Damar Hamlin, the football player who collapsed during a game when his heart stopped? His heart was restarted several times on the field, but he was unconscious (i.e., in a coma) and ended up in the hospital on a ventilator. Under the Drafting Committee’s proposal it’s possible he could have been declared brain dead as the following discussion illustrates. Yet with treatment, he has recovered and been cleared to play football.

Brain death is not limited people who are going to die anyway.

Neither Option 1 nor 2 limits brain death to those who are going to die anyway. In fact, people who could live for many years and people who could fully recover can be declared brain dead.

The change to “permanent” is not limited to treatments rejected by the patient.

The Committee’s memo says: “irreversible” as used in the UDDA means cessation cannot be reversed; “permanent” means cessation could be reversed but it will not be. Remember Damar? What if the doctors decided to stop restarting his heart? In the meeting it was suggested this would come into play by not performing CPR when the patient has a Do Not Resuscitate (DNR) order. Neither Option 1 nor 2’s language limit withheld treatments to only those the patient has rejected.

The change to Coma⁺ from Whole Brain criteria reaches too far.

The Committee is getting input only from those medical organizations that want the UDDA loosened. Option 2’s language ignores parts of the brain that typically continue to function in people now labeled brain dead. There are other practice areas of medicine, such as the Neurocritical Care Society with its Curing Coma Campaign, that believe more people can have improved outcomes and quality of life if the focus is on treatment for patients dealing with coma. The comatose should not be written off.

An analysis in the AMA Journal of Ethics says the existing brain death examination “evaluates function but cannot distinguish between a “stunned,” quiescent brain and an irreversibly damaged brain;… ‘super locked-in patients’ …could appear brain dead, despite preserved consciousness or afferent olfactory and visual pathways, analogous to vegetative patients who demonstrate subclinical awareness when carefully interrogated.” We know that coma can evolve to persistent vegetative state or partial consciousness and that about 50% of those in a persistent vegetative state following a traumatic injury, eventually recover consciousness. This process takes a few months to a year, but brain death is usually determined much more quickly. A quick labeling of brain death does not allow this healing process to take place.

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[1] Shewmon DA et al., “Statement in Support of Revising the Uniform Determination of Death Act and in Opposition to a Proposed Revision,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine (2021):5 of 35.

[2] Thaddeus Mason Pope, "Brain Death Forsaken: Growing Conflict and New Legal Challenges," Journal of Legal Medicine 37, no. 3-4 (July-December 2017): 265-324.

[3] Life sustaining treatment, referred to as organ sustaining treatment continues for brain dead organ donors until the organs are harvested.