Standards and Ethics Issues in the Determination of Death: A Position Paper From the American College of Physicians

How death is determined raises ethical issues and has implications for trust in physicians and the profession as a whole (1). Honesty, transparency, respect, and integrity in how death is determined and communicated to patients, families, and the public support this trust.

Reexamining ethics and the determination of death is especially timely now. In 2018, the 50th anniversary of the Harvard report that created the concept of brain death prompted reflection on the meaning of death (2). Over time, the 2 accepted standards for the determination of death—the cardiorespiratory standard and the neurologic standard—have each been critiqued. A neurorespiratory standard, defined as “brain injury leading to permanent loss of (a) the capacity for consciousness, (b) the ability to breathe spontaneously, and (c) brainstem reflexes,” has been proposed (3). It purports to standardize the neurologic determination of death, but in reality, this standard attempts to redefine brain death by stipulating that these criteria are death (that is, that the criteria are the standard).

Highly publicized legal cases have challenged conceptions of death and its determination (4–6), while efforts have been made to change and harmonize the standards for how death is determined, even globally (7, 8). There is a need for ongoing engagement of patients, families, and the public about the determination of death (9–11). In fall 2020, the Uniform Law Commission appointed a committee to study whether there is a need to amend or revise the 1981 Uniform Determination of Death Act (UDDA), the legal standard in the United States (12). Competing revisions, which differ on key elements, have been proposed (3, 13, 14).

Scientific advances motivate revisiting foundational concepts, including those around death and dying. Decades ago, advanced cardiorespiratory support—because of its ability to maintain cardiac and respiratory functions in individuals whose brain function was thought to have ceased—contributed to the development of brain death as a concept. Studies now show restoration of cellular and molecular activity in whole pig brains (without restoration of brain functions) 4 hours postmortem using an ex vivo perfusion system called “BrainEx” (15, 16). Today, a controversial protocol known as thoracoabdominal normothermic regional perfusion with controlled donation after circulatory determination of death can result in the resuscitation of the asystolic heart to restore circulation after what was a determination of circulatory death—to increase organ availability for transplant—but this invalidates the determination of death and breaches ethical boundaries (17, 18). Moreover, there has been ongoing advancement in ancillary tests, such as electroencephalograms, magnetic resonance angiography, single-photon emission computed tomography, hypothalamic testing (19), computed tomography angiography, computed tomography perfusion (20), and others. Results of these methods of testing can raise questions about the accuracy of clinical determinations of death.

This American College of Physicians position paper addresses current controversies and supports a clarification to the UDDA; maintaining the 2 current independent standards of determining death, cardiorespiratory and neurologic; retaining the whole brain death standard; aligning medical testing with the standards; keeping issues about the determination of death separate from organ transplantation; reaffirming the importance and role of the dead donor rule; and engaging in educational efforts for health professionals, patients, and the public on these issues.

Methods

This paper was developed on behalf of the American College of Physicians (ACP) Ethics, Professionalism and Human Rights Committee (EPHRC). Committee members abide by ACP’s conflict of interest policy and procedures, and appointment to and procedures of the EPHRC are governed by the ACP bylaws. After an environmental assessment to determine the scope of issues and literature reviews, the EPHRC evaluated and discussed drafts of the paper; it was reviewed by the ACP Board of Governors, Board of Regents, Council of Early Career Physicians, Council of Resident/Fellow Members, Council of Student Members, and other committees and experts, and the paper was revised to incorporate comments from these groups and individuals. The ACP Board of Regents approved the paper on 24 April 2023. A glossary of important concepts and their definitions as used in this paper are shown in the Table.

Concept	Definition
Ancillary tests for the determination of death	Additional tests that can be done, based on medical judgment, if an initial diagnosis is uncertain; e.g., computed tomography brain angiography, which can determine the presence or absence of cerebral blood flow
Brainstem standard for the determination of death	A neurologic standard for the determination of death made according to the loss of the integrative capacity of the brainstem (i.e., absence of brainstem reflexes); brainstem standards vary widely—some countries with a brainstem standard stipulate the loss of the capacity for consciousness and the capacity to breathe as the standard of neurologic death
Cardiorespiratory (or circulatory) standard for the determination of death	A standard for the determination of death made according to the cessation of circulatory and respiratory functions; in this position paper, the American College of Physicians recommends the “permanent cessation of circulatory and respiratory functions” as the cardiorespiratory standard
Criteria used in the determination of death	The medical evaluation used to diagnose the state of death in accordance with the operative standard for determining death
Dead donor rule	A fundamental ethical norm regarding organ procurement, the dead donor rule states that organ procurement cannot cause death and that death cannot be caused for the sake of organ procurement
Definition of death	The metaphysical, philosophical, and biomedical concepts that define the cessation of life
Irreversible	According to Merriam-Webster, “incapable of being reversed”; in medical contexts, the concept that it is not biologically possible to reverse a state (e.g., the impossibility of restoring circulation after a prolonged cardiac arrest)
Neurorespiratory standard for the determination of death	A recently proposed standard for the determination of death made according to the permanent loss of the capacity for consciousness, loss of the ability to breathe spontaneously, and loss of brainstem reflexes
Normothermic regional perfusion (thoracoabdominal)	A recently developed ethically inappropriate protocol for organ preservation, thoracoabdominal normothermic regional perfusion uses extracorporeal membrane oxygenation, cardiopulmonary bypass, or other technologies after an initial cardiorespiratory determination of death to restore circulation to the vital organs (including the heart, which may resume beating), thereby invalidating the cardiorespiratory determination of death; ligation of arteries or the placement of shunts is used to prevent recirculation to the brain and ensure brain death
Permanent	According to Merriam-Webster, “continuing or enduring without fundamental or marked change”—in medical contexts, the concept that the state of a patient could, but will not, be changed (e.g., when cardiac resuscitation, although possible, will not be pursued out of respect for the patient’s preferences)
Standards for the determination of death	The standards used to determine that death has occurred; in the United States, the 2 standards are the irreversible cessation of circulatory and respiratory functions or the irreversible cessation of all functions of the entire brain (see the Uniform Determination of Death Act below)
Uniform Determination of Death Act	Model law adopted by most U.S. states that 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.”
Whole brain standard for the determination of death	A neurologic standard for the determination of death made according to the irreversible cessation of all functions of the entire brain; this is the U.S. neurologic standard

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Positions

Position 1

ACP supports revising the Uniform Determination of Death Act (UDDA) to replace the word “irreversible” with “permanent” in the first clause to read, “An individual who has sustained either (1) permanent 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.”

The UDDA (21) currently states, “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.”

Use of the term irreversible in both standards has caused some confusion over the years (22, 23). Today, irreversible is understood to encompass circumstances in which physiologic functions cannot resume (that is, it is not biologically possible). The term permanent is understood to encompass not only circumstances in which physiologic functions cannot resume (that is, are irreversible) but also those in which function will not resume (for example, because resuscitation, although possible, will not be pursued out of respect for the patient’s preferences).

The Uniform Law Commission is considering how to clarify confusion over terminology. Good reasons exist to change irreversible to permanent regarding the circulatory determination of death. When a patient with a do-not-resuscitate order has a cardiac arrest, that patient could be resuscitated but is not (consistent with appropriate medical decision making)—the heart has not stopped irreversibly, but it has stopped permanently. Permanent and irreversible are not synonyms here. Advances in medicine in the area of life-sustaining therapies and patient rights make permanent the more accurate and appropriate term (24).

However, irreversible remains the best term regarding brain death. Current legal, ethical, and medical standards for determining brain death include the requirement that the loss of brain functions be irreversible (that is, that reversible causes of the patient’s medical condition be ruled out). Using permanent with respect to brain death would inappropriately allow determinations of death when conditions, such as hypothermia or drug intoxication, are reversible.

Position 2

ACP supports maintaining circulatory and whole brain (neurologic) standards for determining death as separate, independent standards.

The current UDDA and the ACP Ethics Manual state 2 independent standards for determining death: circulatory and respiratory determination of death or neurologic determination of death. Although circulatory and respiratory functions and brain functions are biologically related (for example, at the level of the brainstem, which controls respiration and circulatory functions, and because the heart and lungs support the brain), they are conceptually distinct. The 1981 UDDA authors seem to have considered but rejected the idea that circulatory determination of death was only death because it led to brain death.

Maintaining circulatory determination of death as an independent standard is important for several reasons. First, it is consistent with current medical practice. One study estimated that almost 98% (25) of in-hospital deaths are determined by circulatory criteria. Second, in these cases, no attempt is made to assess brain functions. This can be illustrated with clinical examples. When a patient whose preferences include a do-not-resuscitate order experiences cardiorespiratory arrest, death is pronounced after an appropriate period of continuous asystole and apnea. The same is true when resuscitation of a patient is attempted but fails to restore spontaneous circulation and respiration. In neither case would a physician perform a formal neurologic examination to determine whether brain functions have ceased irreversibly, as would be necessary if the permanent loss of circulation and respiration were not recognized as a sufficient basis for determining death.

Finally, keeping circulatory determination of death as an independent standard not only respects this older and established standard but also shows respect for those cultures and religious traditions that accept only the circulatory determination of death (26).

Position 3

ACP supports retaining the whole brain standard for determining death according to neurologic criteria and opposes “higher brain” function standards.

The ACP supports the U.S. whole brain standard for determining death, namely the “irreversible cessation of all functions of the entire brain” (1). In some other countries, the neurologic determination of death is made according to standards that do not require the loss of all brain functions or which give greater emphasis to certain brain functions over others (27). For example, the Code of Practice for the Diagnosis and Confirmation of Death in the United Kingdom says, “Death entails the irreversible loss of those essential characteristics which are necessary to the existence of a living human person and, thus, the definition of death should be regarded as the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe [emphasis added]” (28). However, clinicians there test for certain brainstem reflexes as well, and this is sometimes called “brainstem death” (29). Some have suggested this standard may have a “lower burden of proof” that “cannot exclude the retention of awareness” (30).

Others are now advocating for a similar standard in the United States—the so-called neurorespiratory standard (3). The Uniform Law Commission is considering a proposal to change the UDDA to say, “(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 [emphasis added]” (31). Some have argued for a “higher brain” standard for the determination of death, meaning loss of consciousness only (32). The ACP does not support revising the UDDA in any of these ways. These are essentially partial brain death approaches that unjustifiably privilege higher brain functions, such as rationality or consciousness, over others. Depending on which neurologic functions were to be specified, patients who are minimally conscious or in a chronic vegetative state could be declared dead.

The whole brain determination of death is based on an “unambiguous and fundamental biological model” (33), not on a social construct or value judgment (including about which brain functions qualify as higher). Such a determination is more amenable to clinical testing than the mysterious phenomenon of higher-level consciousness. The whole brain standard is thus a firmer biological foundation on which to make the determination of death. In recognition of the distinction between molecular activity within individual cells and clinical brain functions, it has never required cessation of all “cellular activity” (34). This accepted standard also reflects the fact that no single brain function uniquely indicates the presence of life, and it minimizes the likelihood that an individual could be wrongly determined to be brain dead.

Position 4

ACP recommends that the medical tests used for determining death align with standards of death determination, not vice versa, and that the language of the UDDA that “[a] determination of death must be made in accordance with accepted medical standards” be maintained without changes.

Determining death requires clinical examination. The UDDA specified that death be determined “in accordance with accepted medical standards” but purposely did not specify which tests must be used to meet the standards. Although not intended by the UDDA, variation in specific state and institutional practices can mean that a patient who meets requirements for determination of death in one state may not meet those requirements in another (35). Given the biological, social, ethical, and legal significance of death, this can be an understandable source of confusion for patients and the public, undermining trust in the medical profession responsible for these determinations. This creates a strong case for ensuring that the tests used to determine death align with the standards, but as a medical matter, not as a legal requirement.

However, it is important to recognize, as the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and UDDA drafters did, that the clinical, laboratory, and imaging tests used to determine death do not define death; instead, they indicate whether death has occurred. Because technology is constantly changing, new possibilities have and will emerge for ancillary testing to confirm death. This does not mean that every test must be used for every patient. Medical judgment is required, just as ancillary tests already play an important role in some but not all determinations of death (for example, when facial trauma prevents pupillary examination or neuromuscular disease complicates reflex testing).

The standards of circulatory or brain death should not be changed to accommodate testing approaches; instead, testing should be more sensitive and specific to meet the standards for determination of death. This issue is not unique to the determination of death. Throughout medicine, when a test is inaccurate (for example, as some early COVID-19 tests were), the appropriate response is to improve the test, not alter the definition of health or illness (for example, to change the definition of SARS-CoV-2 infection). In some cases of the determination of death, additional tests in accordance with medical standards will be necessary. The fewer or less stringent the criteria used for determining death, the greater the likelihood for falsely determining that a patient is dead.

Moreover, contrary to some current proposals (3), good reasons exist not to specify medical criteria or tests in the UDDA (36), especially because advances in medical knowledge can lead to criteria being revised and new tests being developed, while the standards for determining death remain the same. Making current tests the legal standard means defining death by how it is determined; instead, the standards for determination of death should dictate which tests are developed and used. In addition, this reflects the clinical judgment and unique expertise of medicine, which is characterized by a “specialized body of knowledge” that is learned and shared over time, and by its status as a profession, demonstrated through a commitment to putting patients first (1).

Position 5

Determination of death is a distinct issue from organ transplantation. ACP reaffirms the fundamental ethical importance of the dead donor rule.

Given the connection between how death is determined and organ transplantation, there is a risk that determination of death will be driven, explicitly or implicitly, by interest in obtaining organs for transplantation. As is clear from history, the need to accurately determine death long precedes organ transplantation, and the criteria for determining death should not be governed by the need to procure organs for transplantation. Maintaining separation between discussion of how death is determined and organ transplantation is critical for avoiding potential conflicts of interest and preserving trust in how death is determined.

Although determination of death is a distinct issue from organ transplantation, it is central to it. How death is determined necessarily affects application of the dead donor rule—the fundamental ethical norm underpinning trust in organ transplantation, which states that organ procurement cannot cause death and that death cannot be caused for the sake of organ procurement (37). A proposed method of organ procurement, known as thoracoabdominal normothermic regional perfusion with controlled donation after circulatory determination of death, violates the dead donor rule, raises other ethical concerns (18), and breaches legal standards for the determination of death (38). This is true whether determination of circulatory death requires irreversibility or permanence. The ACP opposes thoracoabdominal normothermic regional perfusion. The ACP reaffirms the dead donor rule because of its foundational role in trust in the organ transplantation enterprise and the ethical norms of respect for persons, doing no harm, and beneficence.

Position 6

ACP recommends that additional education be directed toward physicians and other clinicians and the general public regarding determination of death and communication about it and the dying process.

Data show that members of the general public, and even physicians, often have misunderstandings about the determination of death (9–11, 39, 40). Physicians also report variable training in how to determine death (41). Although initiatives exist to train medical students and physicians about how to determine death, few, if any, have been rigorously educated on how to talk to patients and families about it. Ethically, as matters of honesty, transparency, and respect, physicians have an obligation to be able to communicate clearly about death determination.

New educational interventions may be needed along at least 3 distinct lines. First, education starting in medical school is needed to ensure baseline knowledge of the definition of death, its determination, and recent controversies. Second, enhancing physician communication skills is critical to improving conversations about death. The advance care planning literature shows that multimodal interventions, including facilitator training, peer coaching, role plays, and communications checklists (among others), can be effective for improving difficult conversations (42). Training for medical students, residents, and fellows may be particularly effective at improving skills over the long term. Third, there is a need for broader public education about death and its determination, as has been done for end-of-life care treatment decision making more generally.

Physicians have established ethical obligations regarding support for accurate community education about health and health care (1). Of particular concern from the standpoint of health equity and health disparities, evidence also suggests that conversations around death and dying are especially challenging when patients and families and physicians are of different ethnicities (43). The ACP Ethics Manual notes that “[p]hysicians should also explore how their own knowledge, beliefs, and attitudes influence their ability to fulfill” ethical obligations (1). Along with developing educational interventions for communicating about death determination, such materials should incorporate training in culturally sensitive communication.

Conclusion

How physicians approach determining death is medically and ethically important. Physicians should make and communicate determinations of death with transparency, honesty, respect, and integrity, consistent with medical ethics, the law, and the best available scientific evidence. Doing so is essential to maintaining trust in physicians and the medical profession at the time of death, and in caring for our patients throughout their lives.