In this issue of Pediatric Critical Care Medicine, Paquette et al (1) provide important new information about physician perspectives on parental and surrogate refusals regarding the determination of death by neurologic criteria (DNC). Such refusals have become increasingly common, are often a source of litigation, are stressful for clinicians and distract them from the care of other patients.

The authors found that a dominant factor driving these refusals is family mistrust in the healthcare providers. Not surprisingly, race, ethnicity, and socioeconomic status were associated with refusals, undoubtedly aggravated by the high rates of discordance by race and religiosity between the physicians and the families.

Although the study by Paquette et al (1) provides valuable information to help providers in understanding and responding to these refusals, the results must be interpreted within the constraints of two important limitations. First, the physician respondents may not have had an accurate understanding or correct interpretation of the reasons behind the families’ refusals. Second, the families may not have truthfully shared the true reasons behind their refusal, but instead may have told the physicians reasons that they thought would be most convincing or persuasive to the healthcare team.

Whatever the reasons, clinicians reported a wide range of responses to these refusals. Although some thought that it was unnecessary to obtain informed consent for DNC testing, others saw it as an important part of the interaction with the family. After the testing was performed, and the patient was declared dead by neurologic criteria, clinicians demonstrated variable responses to refusals to accept the diagnosis. The most common approach was to wait and to continue to negotiate with the family, hoping that the family’s resistance would “breakdown” over time, thereby avoiding the need for legal intervention or unwanted coverage in the press and social media. Some refused to initiate new therapies or to escalate existing therapies. In at least one case; however, the team acquiesced to placement of a tracheostomy and surgical feeding tube, and in others the team facilitated transfer to home, to the patient’s country of origin, or to a state where refusal of DNC was legally permissible.

The roots of these conflicts can be traced back to a controversy that arose around the adoption of the Uniform Determination of Death Act (UDDA) in 1981. The UDDA specifies two criteria for the determination of death, one based on the irreversible cessation of circulatory and respiratory functions, and the other based on the irreversible cessation of all functions of the entire brain (2).

A key question at the time was whether the UDDA created a new and unprecedented “definition” of death, based exclusively upon a severe degree of brain injury. The report of a President’s Commission, which accompanied the adoption of the UDDA, insisted that it did not: “As a practical matter, alternative standards may be necessary and appropriate. But the use of two standards in a statute should not be permitted to obscure the fact that death is a unitary phenomenon” (3). In support of this view, the Commission relied on evidence at that time showing that “in all cases [of brain death], despite the most aggressive support, the adult heart stops within 1 week, and that of the child within 2 weeks” (4).

Since then, the view that cardiopulmonary arrest and brain death are just different manifestations of biological death has been vigorously supported within the medical community. A leading scholar of brain death recently wrote that “Globally, [physicians] now invariably equate brain death with death and do not distinguish it biologically from cardiac arrest…” (5). Taking this a step further, a prominent bioethicist wrote that it is “Time to stop using the term ‘brain death’ in public,” since it is confuses the public into thinking that that there is a difference between brain death and biological death. Instead, we should simply tell families that their loved one is “dead” (6).

The problem is that we now know that brain death is not the same as biological death. Biological existence can continue for years after the diagnosis of brain death. This phenomenon is rare, since in the vast majority of cases the diagnosis of brain death is swiftly followed by either termination of ventilator support or organ donation, both of which quickly result in the biological death of the patient. But if the patient is provided with basic life-support like mechanical ventilation and tube feedings, long-term survival is not unusual (7).

The best known case of prolonged biological survival following the determination of brain death is that of Jahi McMath, a teenager who had a cardiac arrest from hemorrhage following a surgical procedure. She was successfully resuscitated, but suffered severe brain injury, and was pronounced brain-dead three days later. Her family refused to accept the diagnosis, sought legal intervention, and had her transferred to New Jersey, the only state that permits families to reject the determination of DNC. She survived biologically for almost five years, mostly cared for at home, until she died from a cardiac arrest that resulted from unrelated liver failure. She has two valid death certificates—one in California that says she died on December 12, 2013, and one in New Jersey that says she died on June 22, 2018. Her story has spread widely through social media and the popular press, and has undoubtedly played a role in the increasing number of families who reject the diagnosis of brain death and insist upon the continuation of life support for their loved ones (8,9).

What can we learn from the McMath case about how to respond to refusals to accept the determination of DNC? First, and most importantly, we should not pretend that these patients are biologically dead. As Paquette et al (1) have shown, mistrust in clinicians and healthcare providers is at the root of many of these refusals. Patients who are brain-dead are often visually indistinguishable from other patients in the ICU, many of whom also appear to be unconscious and dependent on mechanical ventilation and other forms of life support. Biological death quickly leads to decay, disintegration, and putrefaction, something that these families can clearly see is not happening to their loved one. When McMath’s mother expressed skepticism that her daughter was dead, a physician allegedly asked her, “What is it that you don’t understand? She’s dead, dead, dead” (10). If this actually occurred, it was not only a disrespectful way to respond to a reasonable question, but the obvious contradiction between what the mother was seeing and what she was being told clearly erased any trust that her mother might have had in the hospital or her caregivers.

In my practice as a pediatric intensivist, I try to be as honest with families as possible. I explain that their child has suffered a devastating neurological injury, and that (despite what they may have read on the internet), there has never, ever, been a case of a patient correctly diagnosed as brain-dead who has clearly regained consciousness or the capacity for spontaneous respiration. I explain that, under the law, patients who have irreversibly lost the capacity for consciousness and spontaneous respiration are legally dead. As such, I tell them that they may now choose to donate their child’s organs, or after giving them some time to gather with their family, we will withdraw the ventilator.

What should we do when families continue to object to the determination of DNC? I see two possibilities. I think it is reasonable, in our society, to regard patients who will both never wake up or breath on their own, as legally dead. This gives families closure, preserves the use of ICU beds for patients who have a chance for meaningful recovery, and, if the patient has previously indicated or the family so chooses, provides an opportunity for the patient’s organs to be used to help save the lives of others.

But I also think that refusal to accept this socially determined definition of death is not necessarily an unreasonable position, given the plurality of views in our society about how death should be defined. At the same time, I do not think that scarce and expensive medical resources should be devoted to patients who have absolutely no chance of recovering consciousness, and that expenses related to their continued care should be borne by the families or by charitable organizations that support their views. These are questions that the Uniform Law Commission is currently considering in its deliberations about possible revisions to the UDDA (11).

1. Paquette ED, Ross LF, Chavez J, et al.: Refusals of the Determination of Death by Neurologic Criteria: A Mixed Methods Study of Physician Perspectives on Refusals Cases. Pediatr Crit Care Med. 2023; 24:628–635 2. Truog RD, Paquette ET, Tasker RC: Understanding brain death. JAMA. 2020; 323:2139–2140 3. President’s Commission: Defining Death: A Report on the Medical, Legal, and Ethical Issues in the Determination of Death. Washington, DC, Government Printing Office, 1981 4. Bernat JL, Culver CM, Gert B: On the definition and criterion of death. Ann Intern Med. 1981; 94:389–394 5. Wijdicks EFM: Deliberating death in the summer of 1968. N Engl J Med. 2018; 379:412–415 6. Caplan A: Bioethics Today [Internet]. Magnus D, editor: American Journal of Bioethics. 2018. [cited 2023]. Available at: https://bioethicstoday.org/blog/time-to-stop-using-the-term-brain-death-in-public/. Accessed April 13, 2023 7. Shewmon DA: Chronic “brain death” - Meta-analysis and conceptual consequences. Neurology. 1998; 51:1538–1545 8. Truog RD: Defining death-making sense of the case of Jahi McMath. JAMA. 2018; 319:1859–1860 9. Shewmon DA, Salamon N: The extraordinary case of Jahi McMath. Perspect Biol Med. 2021; 64:457–478 10. Aviv R: The death debate. The New Yorker. 2018 (February 5):30–41. 11. Truog RD: The uncertain future of the determination of brain death. JAMA. 2023; 329:971–972