On July 26, 2023, at the annual meeting of the Uniform Law Commission, the Drafting Committee on Death Determination submitted the first reading of a proposed revision (RUDDA) to the Uniform Determination of Death Act (UDDA). (As of this writing, the livestream of this tenth session of the meeting is not yet available for viewing.)
Background and Introduction
The Committee’s Chair, Hon. Sam Thumma, provided introductory comments, calling this professionally the most challenging effort of his career. He stated that until comparatively recently a cardio-respiratory standard was employed for death determination. He attributed the concept of death by neurological criteria (DNC) to the development of ventilators in the 1950s. He called the 1980 incorporation of DNC into the law under the UDDA by the ULC an “innovation”, noting however that it was approved by both the American Medical Association and the American Bar Association. He stated that the current UDDA has been adopted in full or in part by over 40 states.
Thumma went on to say that because science and medicine have changed since 1980, doctors have become concerned that variation has occurred between medical practice and legal requirements. This concern was brought to the attention of the Uniform Law Commission.
Thus, a ULC study committee met from July 2020-June 2021, and after review of the situation, recommended starting a drafting committee. The study committee cited two possible concerns: first, that there was a need for an outside the ULC “champion” for the RUDDA; and second, they noted the possibility of a revision possibly undermining the current UDDA, i.e., “opening Pandora’s box”.
Thumma identified four major points to be addressed:
Medical criteria for death
Irreversible (cannot be reversed) vs. Permanent (will not be reversed)
Which brain regions should be specified?
Accommodations, notification, consent, # providers needed to declare death.
He reviewed that the criteria only apply to hospitalized, ventilated patients, and that death by neurological criteria applies to a very small number of cases, less than ½ of 1% of total deaths, and 2% of hospital deaths.
He emphasized that the current draft has not yet been subjected to a vote by the drafting committee. Because the drafting committee has been unable to come to a consensus, the current proposal contains two possible options for death determination in Section 3, with the idea being that a state would adopt one and only one of the 2 options.
Thumma acknowledged that the comments the ULC has received are heartfelt and almost impossible to reconcile, and include such things as:
Repeal death by neurological criteria in the UDDA.
Whether the law should specify/not specify medical standards for death determination.
Questions of financial burden to patients and insurers if care is not withdrawn.
Questions of administrative burden on hospitals of a notification requirement.
Concerns that time to gather, notification, and accommodation of objection clauses (#4-6) will have an adverse effect on organ donation.
And…no one outside of the ULC champions the effort to date.
Next, Professor Nita Farahany, the Drafting Committee Reporter, provided her comments:
This effort is about determination of death, not a definition of death.
The practice of normothermic regional perfusion with controlled donation after circulatory death, NRP-cDCD, has opened up questions about the number of minutes that must be specified for circulatory-respiratory death, even in Option One, which is the same as the current UDDA.
Overall, there are three camps of opinion:
Eliminate death by neurological criteria (DNC)
Broadly expand the definition of DNC.
Align existing medical practice with legal determination of death by DNC: coma, inability to breathe spontaneously, and loss of brainstem reflexes would correlate with existing medical practice. (She erroneously also said that if you have no brain stem reflexes, your heart will stop beating spontaneously, which is inaccurate.)
Comments from Commissioners
The floor was opened for comments from Commissioners. There was no consensus, with comments reflecting a wide spectrum of opinion on RUDDA. Here are some examples:
Revising the UDDA will do more harm than good, every state will go in a different direction.
Don’t change UDDA but add sections 4,5,6 (the accommodation and opt-out sections) as an addition.
Adopting Option 2 coincides with current practice and adopting this will “restore trust”. For those who are troubled, their minority view should be respected with accommodation.
Do the requirements of Option 2 (coma, lack of spontaneous breathing, lack of brain stem reflexes) reflect biological death? Can death be determined without a definition? The original UDDA used a biological definition of death, the irreversible cessation of the integrated function of the organism as a whole. The apparent definition underlying Option 2 is based on quality of life, the concept of personhood, or questions of whether the organism is functioning as a human being. It was noted that organizations representing Americans with disabilities are very opposed to a determination of death based on function.
There was much discussion of the change in terms from “irreversible” to “permanent”, with Professor Farahany providing this definition:
Irreversible means “cannot be reversed”.
Permanent means “will not be reversed”.
The Commissioners wanted this definition to be more clearly spelled out in the wording of the statute.
The law should only change when a societal consensus percolates up from the states, and no state legislature has asked to change the UDDA.
If there is a mismatch between the law and current medical practice, the outright disregard for the standard is the problem. Should we be changing the act to accommodate breaches, or should we enforce the law?
If there is no broad consensus in favor of the RUDDA in the medical community, we should stick to what we have.
Another option would be universal advanced directives.
What is the justification to drop the whole brain death/biological standard and change to partial brain death/personhood standard? We should not declare people dead who are not. Mental capacity is important, but we should not treat people as dead based on mental capacity. Withdrawal of futile care remains a healthcare decision.
Will this impact healthcare cost if people are allowed to opt-out of DNC?
New Jersey experience shows that this is a small number, about 4%. Overall healthcare costs make this a drop in the bucket, and worth it to preserve trust.
Drafting Committee to Continue Meeting for Another Year
At the end of the three-hour session, Chair Hon. Sam Thumma thanked participants for a robust discussion. He said there was a lot of food for thought in what was expressed and felt that progress had been made. He thanked everyone involved and encouraged ongoing input. The moderator for the ULC accepted the Drafting Committee’s report and directed the committee to return with their further results to the annual ULC meeting next year.