The Uniform Law Commission is an aggregation of 350 state-appointed commissioners who provide “states with non-partisan, well-conceived and well-drafted legislation that brings clarity and stability to critical areas of state statutory law.” In 1980, it drafted the medico-legal criteria for death, which were adopted by most states. In July, the Commission failed to reach a consensus on how to update a 43-year-old legal standard.
Before jumping in let me address the large unspoken of this discussion. The thoughtful reader will already know or quickly come to realize the truth of the words of one of the Commission’s members,
“the controversies around brain death and abortion are an ‘identical debate, just in a different context.’”
Defining death, like defining the beginning of life, is complex, nuanced, and informed but not wholly driven by our latest scientific understanding. Cultural values are transcendent. Defining the end of life seems less fraught with emotions than defining the beginning of life, probably because death comes to us all, making our actions seem less “direct,” and talking about our mortality is uncomfortable, so we pay less attention to the guidelines. Only a fraction of us face the beginning of life choices, which have a very different sense of immediacy and impact. As you read about the Uniform Law Commission's concerns, it is an interesting thought experiment to consider how context does or does not change your views.
Stumbling Blocks
The Uniform Law Commissions’ [1] Uniform Death Act, that 1980 document, defines the death of an individual
“… has sustained (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem. A determination of death must be made in accordance with accepted medical standards.” [emphasis added]
Those emphasized words “irreversible” and “entire brain” reflect cultural beliefs and advances in our scientific understanding – they are the stumbling blocks to a new consensus.
Deep within the brain lies the hypothalamus, which links our brain and endocrine function. There have been several studies at this point that have demonstrated the continued release of neurohormones in individuals characterized as “brain dead.” As the authors write,
“…preserved hypothalamic function in a patient who is diagnosed as “brain-dead” should render the diagnosis a false positive misdiagnosis.”
The meaning of the word function is at play here—the current criteria tests for brain functions like the ability to initiate and sustain breathing without mechanical assistance. The continued release of neurohormones is a necessary and essential function of the brain, so in an absolutist sense, the criteria for brain death must be expanded to account for that activity. From the point of view of a relativist, neurohormonal release is not as critical a function as the ability to spontaneously take a breath; there is an underlying hierarchy we might apply. [2]
Legal Wordsmithing
Anyone with experience with our legal system knows that much more hinges on words and their meaning than the aspirational goal of “justice.” The second stumbling block is the practical meaning of “irreversible.”
“…in practice the standard has been “permanence,” with the distinction being that irreversible implies that the function cannot be restored, whereas permanence means that the function will not be restored because no attempt will be made to do so.”
The reason that no attempt is made lies in another less-spoken area of medicine: the futility of care. More often than not, futility of care is discussed in terms of the spending by Medicare in the last months of life or the way hospice care is often delayed.
The dilemma faced by the Committee this past July was how to “harmonize” advances in science and how medicine is practiced. The Committee was offered this new definition, which enumerates the brain functions that must be absent rather than using the more scientifically ambiguous “entire brain;” and replaces irreversible with a more legally nuanced permanent.
“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.”
In reality, there is no way to prove irreversible or permanent; miracles (or misdiagnosis) do occur, so the use of permanent is a legal nod to the individual practitioner’s concept of futility of care. [3] But futility is often in the eye of the beholder. The proposed revision
“would have required hospitals to respect the refusal of patients or their surrogates to having death determined by neurological criteria.”
Those holding the sanctity of life paramount, like the Catholic Medical Association, were obviously in support of this revision, as were several commissioners “who saw it as a way to respect the diversity of opinions surrounding the determination of death while still supporting the concept of brain death.” Other stakeholders, including physicians and transplant organizations, argued that such a requirement would place undue financial burdens on the healthcare system or negatively impact organ recruitment for transplantation.
How our society discusses the end and beginning of life seems to me to be dysfunctional. The end of life is left in the shadows, the beginning “discussed” within the hot glare of media and sound bites.
[1] The late Justice Sandra Day O’Connor describes the Commission here
[2] Parenthetically, this hierarchy discussion lies at the heart of the culture wars on the criteria for the initiation of life. Is it based on objective measures, i.e., heartbeat, an apparent response to pain or external stimuli occurring at different times after conception, or a less objective spiritual presence?
[3] This futility of care also lies at the heart of our cultural wars over the initiation of life. This is especially poignant in that we can now save increasingly younger births but at the price of severely debilitating physiologic derangements that diminish, if not destroy, the quality of that “saved” life.
Source: The Unsuccessful Effort to Revise the Uniform Determination of Death Act JAMA DOI: 10.1001/jama.2023.24475
