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)

Jehovah's Witnesses' (JWs) refusal of blood transfusions has recently gained support in the medical community because of the growing popularity of "no-blood" treatment. Many physicians, particularly so-called "sympathetic doctors", are establishing a close relationship with this religious organization. On the other hand, it is little known that this blood doctrine is being strongly criticized by reform-minded current and former JWs who have expressed conscientious dissent from the organization. Their arguments reveal religious practices that conflict with many physicians' moral standards. They (...) also suggest that a certain segment of "regular" or orthodox JWs may have different attitudes towards the blood doctrine. The author considers these viewpoints and argues that there are ethical flaws in the blood doctrine, and that the medical community should reconsider its supportive position. The usual physician assumption that JWs are acting autonomously and uniformly in refusing blood is seriously questioned. (shrink)

This chapter reviews fundamental ethical controversy surrounding the ongoing effort to revise the Uniform Determination of Death Act in the United States. Instead of focusing on the process of the revision itself, the chapter explores the underlying ethical debate over brain death that has been ongoing for many decades and finally culminated in this revision. Three issues are focused: the requirement for consent and personal exemptions before applying brain death for the diagnosis of death; redefining the areas of the brain (...) that have ceased to function in the definition of brain death; and codifying the American Academy of Neurology as the authority to issue the standards of the diagnosis of brain death. The chapter concludes that allowing the personal choice of death determination gives a pragmatic compromise to the disputed definition and practice of diagnosing brain death. So long as all risks and imperfections of the diagnosis are accepted through the consenting process, there is nothing ethically objectionable to continuing the current practice of diagnosing brain death as a successful tool to facilitate heart-beating organ donation without violating the dead-donor rule. By contrast, precluding personal choice and imposing legal restrictions to consent and exemptions would further erode public trust. (shrink)

The aim of this essay is to elaborate philosophical and ethical underpinnings of posthumous diagnosis of famous historical figures based on literary and artistic products, or commonly called retrospective diagnosis. It discusses ontological and epistemic challenges raised in the humanities and social sciences, and attempts to systematically reply to their criticisms from the viewpoint of clinical medicine, philosophy of medicine, particularly the ontology of disease and the epistemology of diagnosis, and medical ethics. The ontological challenge focuses on the doubt about (...) the persistence of a disease over historical time, whereas the epistemic challenge disputes the inaccessibility of scientific verification of a diagnosis in the past. I argue that the critics are in error in conflating the taxonomy of disease and the act of diagnosing a patient. Medical diagnosis is fundamentally a hypothesis-construction and an explanatory device that can be generated under various degrees of uncertainty and limited amount of information. It is not an apodictic judgment as the critics presuppose, but a probabilistic judgment with varying degrees of plausibility under uncertainty. In order to avoid this confusion, I propose that retrospective diagnosis of a historical figure be syndromic without identifying underlying disease, unless there is justifiable reason for such specification. Moreover it should be evaluated not only from the viewpoint of medical science but also in a larger context of the scholarship of the humanities and social sciences by its overall plausibility and consistency. On the other hand, I will endorse their concerns regarding the ethics and professionalism of retrospective diagnosis, and call for the need for situating such a diagnosis in an interdisciplinary scope and the context of the scholarship of the historical figure. I will then enumerate several important caveats for interdisciplinary retrospective diagnosis using an example of the retrospective diagnosis of Socrates for his life-long intermittent neurologic symptoms. Finally, I will situate the present argument in a larger context of the major debate among the historians of medicine and paleopathologists, and discuss the similarities and differences. (shrink)

Most physicians dealing with Jehovah's Witnesses (JWs) who refuse blood-based treatment are uncertain as to any obligation to educate patients where it concerns the JW blood doctrine itself. They often feel they must unquestioningly comply when demands are framed as religiously based. Recent discussion by dissidents and reformers of morally questionable policies by the JW organisation raise ethical dilemmas about "passive" support of this doctrine by some concerned physicians. In this paper, Part 2, I propose that physicians discuss the misinformation (...) and irrationality behind the blood doctrine with the JW patient by raising questions that provide new perspectives. A meeting should be held non-coercively and in strict confidence, and the patient's decision after the meeting should be fully honoured (non-interventional). A rational deliberation based on new information and a new perspective would enable a certain segment of JW patients to make truly informed, autonomous and rational decisions. (shrink)

There are two contrasting views on the decision-making for life-sustaining treatment in advanced stages of dementia when the patient is deemed incompetent. One is to respect the patient's precedent autonomy by adhering to advance directives or using the substituted judgement standard. The other is to use the best-interests standard, particularly if the current judgement on what is best for the incapacitated patient contradicts the instructions from the patient's precedent autonomy. In this paper, I argue that the protracted clinical course of (...) dementia over many years requires the extended perspective of a progressive decision-making process—extended in both social space and time. The ongoing debate between these two competing views has missed this perspective by focussing on an exclusive disjunction between the competent former self and the incompetent current self. Drawing on theories of situated cognition in cognitive science, I will show that the cognition of a demented patient can be viewed as extended and embodied by her supportive social environment. As the disease progresses, the content of the mind of a demented person becomes partially constituted by such external resources along with her diminishing intrinsic mind. With this understanding, medical decision-making for a demented patient can be construed as a temporally and socially extended practice. A collective decision-making body consisting of the patient, her family and surrogates, and the clinician, should make progressive decisions as a whole over years of the disease course. Finally, I will provide a practical example of how this proposal can be applied in clinical practice. (shrink)

Purpose: Some enigmatic remarks and behaviors of Socrates have been a subject of debate among scholars. We investigated the possibility of underlying epilepsy in Socrates by analyzing pathographic evidence in ancient literature from the viewpoint of the current understanding of seizure semiology. Methods: We performed a case study from a literature survey. Results: In 399 BCE, Socrates was tried and executed in Athens on the charge of “impiety.” His charges included the “introduction of new deities” and “not believing in the (...) gods of the state,” because he publicly claimed that he was periodically and personally receiving a “divine sign,” or daimonion, that directed him in various actions. We found textual evidence that his daimonion was probably a simple partial seizure (SPS) of temporal lobe origin. It was a brief voice that usually prohibited Socrates from initiating certain actions. It started when he was a child, and it visited Socrates unpredictably. Moreover, we found at least two descriptions of Socrates’ unique behavior that are consistent with complex partial seizures (CPSs). The fact that Socrates had been experiencing both SPSs and CPSs periodically since childhood makes the diagnosis of temporal lobe epilepsy (TLE) likely. Conclusions: We hypothesize that Socrates had a mild case of TLE without secondary generalization. This is the first report in 2,400 years to present a pathographic diagnosis of TLE in Socrates based on specific diagnostic features in the ancient textual evidence. Our study demonstrates that the knowledge of modern epileptology could help understand certain behaviors of historic figures. (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)

This essay provides a medical theory that could clarify enigmas surrounding the historical Socrates. It offers textual evidence that Socrates had temporal lobe epilepsy and that its two types of seizure manifested as recurrent voices and peculiar behaviour, both of which were notorious hallmarks of Socrates. Common and immediate criticisms against the methodology of retrospective diagnosis are addressed first. Next, the diagnostic reasoning is presented in detail. The possibility of temporal lobe personality in Socrates is also considered. The important implication (...) of this theory is that one of the charges against Socrates, introducing new divinities, was a now well-known neurologic symptom. (shrink)

Of growing concern over Jehovah's Witnesses' (JWs) refusal of blood is the intrusion of the religious organisation into its members' personal decision making about medical care. The organisation currently may apply severe religious sanctions to JWs who opt for certain forms of blood-based treatment. While the doctrine may be maintained as the unchangeable "law of God", the autonomy of individual JW patients could still be protected by the organisation modifying its current policy so that it strictly adheres to the right (...) of privacy regarding personal medical information. The author proposes that the controlling religious organisation adopt a "don't-ask-don't-tell" policy, which assures JWs that they would neither be asked nor compelled to reveal personal medical information, either to one another or to the church organisation. This would relieve patients of the fear of breach of medical confidentiality and ensure a truly autonomous decision on blood-based treatments without fear of organisational control or sanction. (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)

Mr Ridley of the Watch Tower Society , the controlling religious organisation of Jehovah's Witnesses , mischaracterises the issue of freedom and confidentiality in JWs' refusal of blood by confusing inconsistent organisational policies with actual Biblical proscriptions. Besides exaggeration and distortion of my writings, Ridley failed to present substantive evidence to support his assertion that no pressure exists to conform to organisational policy nor systematic monitoring which compromises medical confidentiality. In this refutation, I present proof from the WTS's literature, supported (...) by personal testimonies of JWs, that the WTS enforces its policy of blood refusal by coercive pressure to conform and through systematic violation of medical confidentiality. Ridley's lack of candour in dealing with the plea of dissident JWs for freedom to make personal and conscientious decisions regarding blood indicates that a serious breach of ethics in the medical care of JWs continues. The medical community should be seriously concerned. (shrink)