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December 7, 2023

The Unsuccessful Effort to Revise the Uniform

Determination of Death Act
Robert D. Truog, MD1,2; David C. Magnus, PhD3

 Author Affiliations | Article Information

JAMA. 2023;330(24):2335-2336. doi:10.1001/jama.2023.24475

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I n 1968, a Harvard committee proposed a new approach for determining death, one based on the ir-
reversible loss of neurological functions.1 This concept was instantiated into law in 1980 when the
Uniform Law Commission endorsed The Uniform Determination of Death Act.2 The act, which a large
majority of states have adopted in whole or with some variations, says, in part, that an individual is
dead if the 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.

In 2020, the commission was asked to consider updating the act, based in part on concerns that the act
does not fully align with current medical practice.3 A draft of its revision was presented and discussed
at the commission’s annual meeting on July 26, 2023.4 Herein, we summarize the major issues that led
to the decision to draft a revision, the alternatives that were considered, why there was failure to reach
consensus, and what this means for the future.

What Were the Issues?

The Uniform Determination of Death Act defines neurological death, commonly known as brain death,
as the complete absence of all functions of the entire brain. The current diagnostic criteria, however,
test for only a subset of brain functions, and most notably do not include testing for neurosecretory hy-
pothalamic functions, which are retained by many patients who have been diagnosed as brain dead.5 In
addition, the law requires the “irreversible” cessation of biological functions, whereas 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 at-
tempt will be made to do so.

In addition, some religious and cultural views insist that death should be defined solely in terms of the
loss of cardiorespiratory functions and not by the loss of neurological functions alone. Those who hold
these views often demand that supportive measures, such as mechanical ventilation and tube feedings,
be continued indefinitely, in some cases for many years. As a result, hospitals have faced an increasing
number of lawsuits and legal challenges from families who want the right to opt out of the determina-
tion of death by neurological criteria.

What Alternatives Were Considered?

In order for medical practice to be in compliance with the law, the commissioners considered either
changing the guidelines to conform with the law, or changing the law to conform with the guidelines.
Under the first approach, the guidelines would require physicians to diagnose the irreversible cessation
of all brain functions, not just selected functions. This would be challenging, given the difficulty of de-
tecting and measuring all of the brain’s many functions. Alternatively, the law could be revised to be
coherent with current practice guidelines. At the annual meeting of the Uniform Law Commission, the
committee considered the following draft alternative to the existing Uniform Determination of Death
Act4: “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.”

This proposal would harmonize the law with the practice guidelines. Instead of requiring the absence of
all brain functions, this revision would have required only the absence of specific brain functions,
namely the capacity for consciousness and spontaneous respiration.

The proposed revision also would have replaced the requirement for irreversible cessation with perma-
nent cessation, thereby anticipating the trajectory of new developments in resuscitation research, in-
cluding work demonstrating the potential for restoration of neuronal function in brains, even many
hours after the loss of brain perfusion.6 Using the permanence standard, death can be determined in
these patients on the grounds that function will not be restored rather than the requirement that it
cannot be restored.

Finally, the proposed revision also included a section that would have required hospitals to respect the
refusal of patients or their surrogates to having death determined by neurological criteria. This position
was supported by various constituencies, including the Catholic Medical Association, as well as several
of the Uniform Law Commission 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. At the same
time, this approach was strongly condemned by most mainstream physician and transplant organiza-
tions, given the burden that it would place on hospitals and intensive care units and its potential nega-
tive impact on organ procurement.

When the deliberations of the Uniform Law Commission concluded, the chair person encouraged con-
tinued input and debate from the commissioners and the public, seemingly with the intention of con-
tinuing efforts to revise the act. However, in an email on September 22, 2023, the committee leader-
ship announced that they had decided to pause the process, saying that “although we will continue to
hope mid-level principles will become apparent, no further drafting committee meetings will be sched-
uled at this time.”

Perhaps this outcome could have been predicted from the beginning, given the polarization that has
evolved in the US around issues at the beginning and end of life. Commissioner James Bopp empha-
sized these connections in asserting that the controversies around brain death and abortion are an
“identical debate, just in a different context.”7 Commissioner Peter Langrock (a member of the original
1980 committee) wrote a memo to the other committee members imploring them to refrain from revis-
ing the act, worrying that “a new act would not promote uniformity but would have exactly the oppo-
site effect,” and warning his fellow commissioners that a revised act “will do more mischief than it will
do good.”8

Where Do We Go From Here?

Despite the issues that led the commission to consider revising the Uniform Determination of Death
Act, the concept is generally well accepted. Brain death is legally recognized as death is every state and
jurisdiction, and only New Jersey gives patients or surrogates full permission to opt out for religious
reasons.

Yet the problems that led the commission to embark on an effort to revise the act remain. Given the
current political environment, some of the issues, such as whether to require surrogate informed con-
sent before brain death testing or opt-out provisions for those who reject the determination of death
by neurological criteria, will likely play out at the state level. And short of legislative changes, patients
and families who refuse to permit testing or the determination of death by neurological criteria will
continue to bring lawsuits. The response from clinicians and hospitals will likely remain variable, with
some acceding to demands for long-term somatic support (either in the hospital, at a long-term care
facility, or at home), whereas others will likely insist on terminating support over the objections of the
family. These decisions will be accompanied by inconsistent policies and practices regarding insurance
coverage for the care of patients after the determination of brain death.

Finally, although patients and families who reject the diagnosis of brain death would be unlikely to do-
nate organs, greater public awareness of this conflict could undermine the confidence of the public in
the way that death is determined, thereby aggravating the already dire shortage of transplantable or-
gans. Until new technologies aimed at deriving organs from other sources—such as genetically modified
pigs or cultured stem cells—become a viable reality, many of the controversies surrounding the pro-
curement of organs from humans who have been determined to be dead will likely remain unresolved.

Article Information Back to top

Corresponding Author: Robert D. Truog, MD, Center for Bioethics, Department of Global Health and
Social Medicine, Harvard Medical School, Boston Children’s Hospital, Bader 6, 300 Longwood Ave,
Boston, MA 02115 (robert_truog@hms.harvard.edu).

Published Online: December 7, 2023. doi:10.1001/jama.2023.24475

Conflict of Interest Disclosures: None reported.

Additional Information: Drs Magnus and Truog were invited observers to both the Uniform Law
Commission study committee and drafting committee for revision to the Uniform Determination of
Death Act.

References

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