BackgroundThis essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for over (...) 2 years illustrates how such a consent would have made a crucial difference.MethodsConceptual, philosophical, and ethical analysis.ResultsI first consider a conceptual justification for the use of consent for certain non-beneficial and unwanted medical diagnoses. I suggest that the diagnosis of brain death falls into this category for some patients. Because the diagnostic process of brain death lacks the transparency of traditional death determination, has a unique epistemic structure and a complex risk-benefit profile which differs markedly from case to case, and presents conflicts of interest for physicians and society, I argue that pre-diagnostic counseling and informed consent should be part of the diagnostic process. This approach can be termed as “allow cardiac death”, whose parallel logic with “allow natural death” is discussed. I also discuss potential negative impacts on organ donation and health care cost from this proposal and offer possible mitigation. I show that the pre-diagnostic counseling can improve the possibility for well-thought-out decisions regarding organ donation and terminating life-support system in cases of hopeless prognosis. This approach differs conceptually from the pluralism of the definition of death, such as those in New Jersey and Japan, and it upholds the Uniform Determination of Death Act.ConclusionsMy intention is not to provide an instant panacea for the ongoing impasse of the brain death debate, but to point to a novel conceptual ground for a more pragmatic, and more patient- and family-centered approach. By enabling the family to consent to or decline the diagnostic process of brain death, but not to choose the definition of death, it upholds the current legal definition of death. (shrink)

For decades, physicians, philosophers, theologians, lawyers, and the public considered brain death a settled issue. However, a series of recent cases in which individuals were declared brain dead yet physiologically maintained for prolonged periods of time has challenged the status quo. This signals a need for deeper reflection and reexamination of the underlying philosophical, scientific, and clinical issues at stake in defining death. In this paper, I consider four levels of philosophical inquiry regarding death: the ontological basis, actual states of (...) affairs, epistemological standards, and clinical criteria for brain death. I outline several candidates for the states of affairs that may constitute death, arguing that we should strive for a single, unified ontological definition of death as a loss of integrated functioning as a unified organism, while acknowledging that two states of affairs may satisfy this concept. I argue that the clinical criteria for determining whole-brain death should be bolstered to meet the epistemic demand of sufficient certainty in defining death by adding indicators of cerebro-somatic dis-integration to the traditional triad of loss of consciousness, loss of brainstem function, and absence of confounding explanations. (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)

To paraphrase Lewis Carroll’s poem “The Walrus and the Carpenter” from his Through the Looking Glass, “The time has come to talk of many things.” Not as the Walrus did in the nursery rhyme, “of sho...

This paper examines the relationship between medical technology and liminal states of “undeath” as presented in “The Facts in the Case of M. Valdemar” and the real-life case of Jahi McMath, who was maintained on life support for over four years following a diagnosis of brain death. Through this juxtaposition, “Valdemar” comes to function as a modern fable, an uneasy herald of medical technology’s potential to create liminal states between life and death. The ability to transgress these boundaries bears a (...) cost, however: both Valdemar and Jahi McMath lose the autonomy to direct their respective narratives. Yet, their utterances “from beyond the grave” highlight the precarious nature of their position and the ethical concerns therein. Poe’s literary performance of “undeath” therefore serves to caution real-life cases in which life support is used to sustain an individual reported to be brain-dead. Such application of life-sustaining technology complicates the fundamental binary of life/death, allowing its subjects to resist textual closure. Even as Poe’s work represents an imaginative interrogation of the scientific enterprise, this nineteenth-century story holds a mirror to contemporary medical practice, inviting a reconsideration of the ethics, language, and power relations surrounding the fraught relationship between death and medical technology. (shrink)