Discrepancies between the Uniform Determination of Death Act (UDDA) and the adult and pediatric diagnostic guidelines for brain death (BD) (the “Guidelines”) have motivated proposals to revise the UDDA. A revision proposed by Lewis, Bonnie and Pope (the RUDDA), has received particular attention, the three novelties of which would be: (1) to specify the Guidelines as the legally recognized “medical standard,” (2) to exclude hypothalamic function from the category of “brain function,” and (3) to authorize physicians to conduct an apnea (...) test without consent and even over a proxy’s objection. One hundred seven experts in medicine, bioethics, philosophy, and law, spanning a wide variety of perspectives, have come together in agreement that while the UDDA needs revision, the RUDDA is not the way to do it. Specifically, (1) the Guidelines have a non-negligible risk of false-positive error, (2) hypothalamic function is more relevant to the organism as a whole than any brainstem reflex, and (3) the apnea test carries a risk of precipitating BD in a non-BD patient, provides no benefit to the patient, does not reliably accomplish its intended purpose, and is not even absolutely necessary for diagnosing BD according to the internal logic of the Guidelines; it should at the very least require informed consent, as do many procedures that are much more beneficial and less risky. Finally, objections to a neurologic criterion of death are not based only on religious belief or ignorance. People have a right to not have a concept of death that experts vigorously debate imposed upon them against their judgment and conscience; any revision of the UDDA should therefore contain an opt-out clause for those who accept only a circulatory-respiratory criterion. (shrink)

Requiring family authorization for apnea testing subtracts health professionals control over death determination, a procedure that has traditionally been considered a matter of clinical expertise alone. In this commentary, we first provide evidence showing that health professionals’ (HPs) disposition to act on death determination without family’s prior consent could be much lower than that referred to by Berkowitz and Garrett (2020). We hypothesize that HPs may have reservations about their own expertise as regards death, and may thus hesitate to impose (...) their views on patients’ families. We then address the theoretical question of clinical expertise in death determination by distinguishing judgments about facts (e.g., the presence or absence of spontaneous breathing) from interpretations given of these facts (i.e., their meaning for the vital status of an individual). We argue that, while clinicians may claim some expert authority on the former, they hold no particular authority on the latter. (shrink)

In the half-century history of clinical practice of diagnosing brain death, informed consent has seldom been considered until very recently. Like many other medical diagnoses and ordinary death pronouncements, it has been taken for granted for decades that brain death is diagnosed and death is declared without consideration of the patient’s advance directives or family’s wishes. This essay examines the pros and cons of using informed consent before the diagnosis of brain death from an ethical point of view. As shared (...) decision-making in clinical practice became increasingly indispensable, respect for the patients’ autonomous wishes regarding how to end their lives has a significant role in deciding how death is diagnosed. Brain death, as a fully technologically controlled death, may require a different ethical framework from the old one for traditional cardiac death. With emerging and proliferating options in end-of-life care for those who suffer from catastrophic brain injury, the traditional reasoning that ‘death gives no choice, hence no consent’ requires another examination. Patients facing imminent brain death now have options other than undergoing the diagnostic workup for brain death, such as donation after circulatory death and withdrawal of life-sustaining treatment with maximum comfort measures for death with dignity. Nevertheless, just as in the debate over opt-in versus opt-out organ donation policies, informed consent before the diagnosis of brain death faces fierce opposition from consequentialists urging the expansion of the donor pool. This essay examines these objections and provides constructive replies along with a proposal to accommodate this morally required consent. (shrink)

In modern hospitals in developed countries, deaths are determined usually after a prearranged schedule of resuscitative efforts. By default, death is diagnosed and determined after “full code” or after the failure of intensive resuscitation. In end-of-life contexts, however, various degrees of less-than-full resuscitation and sometimes no resuscitation are allowed after the consent and shared decision-making of the patient and/or surrogates. The determination of brain death is a unique exception in these contexts because such an end-of-life care plan is usually not (...) offered until after brain death is declared. This essay analyzes and critiques three arguments for denying the family and/or surrogate a chance to consent to or forego the diagnostic protocol of brain death and choose an alternative end-of-life plan. First, opponents of consent for the determination of brain death argue that presenting it as a selectable end-of-life plan undermines the integrity of death determination. The second argument is that it is inconsistent to allow foregoing the determination of brain death when the determination of circulatory death is non-negotiable. The third argument is that allowing the patient/surrogate to forego the determination of brain death would jeopardize the fair and appropriate utilization of intensive care resources and potentially reduce organ donor pools. After closer conceptual examinations of these three arguments, this essay concludes that these arguments are conceptually and morally problematic. It defends an alternative patient-centered end-of-life care plan based on consent and shared decision-making. (shrink)