Statutory definitions of death and the management of terminally ill patients who may become organ donors after death

The law stipulates that death is irreversible. Patients treated in accord with the Pittsburgh protocol have death pronounced when their condition might well be reversed by intervention that is intentionally withheld. Nevertheless, the protocol is in accord with the medical "Guidelines for the Determination of Death." However, the Guidelines fail to capture the intent of the law, which turns out to be a good thing, for the law embodies a faulty definition of death. The inclusion of "irreversible" in the legal definition makes that definition excessively demanding and out of step with the ordinary concept of death. On this basis the protocol is absolved of the moral but not the legal charge that it involves vivisection.     

Effects of Protocol of Play and Social Orientation on Behavior in Sequential Resource Dilemmas

We report results of an experiment in which we examined consumption behavior of groups of players sharing a common resource pool under four distinct protocols of play. Under thesimultaneousprotocol all subjects make their requests simultaneously. In the other three protocols, players make requests, one at a time, but with various types and levels of information about the process: In thesequentialprotocol, subjects make requests with complete information about their position in the sequence and full disclosure of previous requests; In thepositionalprotocol, requests are made with precise information on one's position in the sequence order, but without disclosing the requests of previous players; Finally, under thecumulativeprotocol, subject make requests with complete information regarding the total previous requests, but do not know their exact position in the sequence. We found a significant "position effect" in all three nonsimultaneous protocols: Mean individual requests and position in the sequence are negatively correlated, reflecting an "early mover advantage" and a "late mover handicap." The effect is weakest in the positional protocol, whereas the sequential and cumulative protocols are, practically, identical. We conclude that although position effects can be induced by temporal priority, they are primarily driven by differential patterns of information regarding the behavior of the other group members. Although the request pattern was consistent with predictions based on the subjects' social orientation, the differences were not quite as pronounced (and significant) as in the "regular" simultaneous dilemmas. On the other hand, we found that the subjects' requests in the simultaneous protocol were an accurate predictor of their behavior in the other protocols as well.     

The dead donor rule: how much does the public care...and how much should we care?

In this brief commentary, we reflect on the recent study by Siminoff, Burant, and Youngner of public attitudes toward "brain death" and organ donation, focusing on the implications of their findings for the rules governing from whom organs can be obtained. Although the data suggest that many seem to view "brain death" as "as good as death" rather than "dead" (calling the dead donor rule into question), we find that the study most clearly demonstrates that understanding an individual's definition of death is neither a straightforward task nor a good predictor of views about donation. Reflecting on the implications for ongoing debates over the dead donor rule, we suggest that perhaps it is not a change in policy that is warranted, but rather a change in the priorities that have garnered such intense focus on this issue within the field of bioethics.     

A polemic on principles: reflections on the Pittsburgh protocol

The Pittsburgh protocol relies heavily on traditional moral distinctions, particularly the principle of double effect, to justify "managing" the dying process of a prospective organ donor in order to yield viable organs for transplantation. These traditional moral distinctions can be useful, particularly in casuistic or case-specific moral analysis, but their invocation here is unpersuasive, and potentially dangerous. The protocol relies on elaborate apologetics to avoid a candid confrontation with the moral challenge it poses--society's willingness to bring about the death of one patient (in isolation and with potential discomfort) in order to benefit another patient. Not only will this protocol fail to solve the problem it purports to address, it threatens to undermine the delicate social accommodations by which we distinguish the living from the dead, permissible "allowings to die" from impermissible killings, and those from whom organs may be removed from those whose bodies must remain inviolate.     

Anticruelty care: commentary

The anticruelty policy is a best-interests test for treatment plans including decisions to forgo life-sustaining therapy for certain incompetent patients. In connection with specific proposed therapy, the policy requires no reference to the patient's unknowable values, subjective experiences, or quality of life. The decision to undertake a treatment plan derives from the caregiver's knowledge of burdens and benefits of that treatment when used in caring for the competent or for those incompetents capable of growth or repair. The caregiver should weigh the potentially cruel effects of treatment against the likelihood of reducing suffering or encumbrance with the treatment. The terms "burden" and "benefit," in fact, are replaced by the terms "cruelty" and "beneficence," as the relevant opposing outcomes that must be weighed. Thus, the anticruelty policy shifts our scrutiny from experiences of the patient that we cannot evaluate to the proposed actions of the competent decision makers and caregivers. Notably, it is a protreatment policy when the goals of medicine are attainable; and it is an anticruelty policy when they are not. The policy does evaluate the world of the patient to the extent that it requires a judgment based upon external appearances about patient pleasure or happiness in living. It presumes to universalize larger societal values about cruelty, beneficence, compassionate concern for the helpless, and certain rights of individuals. And it presumes to universalize on the patient's behalf specific medical values about hopeless injury, timely death, the goals of medicine, and cruelty, which should remain open to societal discussion and revision. The presented definition of hopeless injury does not require brain death, coma, or persistent vegetative state. Specifically, the policy holds that death is timely for a patient with hopeless injury, and that prevention of death for such patients is not a goal of medicine but a cruelty.     

Death and organ procurement: public beliefs and attitudes

Although "brain death" and the dead donor rule--i.e., patients must not be killed by organ retrieval--have been clinically and legally accepted in the U.S. as prerequisites to organ removal, there is little data about public attitudes and beliefs concerning these matters. To examine the public attitudes and beliefs about the determination of death and its relationship to organ transplantation, 1351 Ohio residents >18 years were randomly selected and surveyed using random digit dialing (RDD) sample frames. The RDD telephone survey was conducted using computer-assisted telephone interviews. The survey instrument was developed from information provided by 12 focus groups and a pilot study of the questionnaire. Three scenarios based on hypothetical patients were presented: "brain dead," in a coma, or in a persistent vegetative state (PVS). Respondents provided personal assessments of whether the patient in each scenario was dead and their willingness to donate that patient's organs in these circumstances. More than 98 percent of respondents had heard of the term "brain death," but only one-third (33.7%) believed that someone who was "brain dead" was legally dead. The majority of respondents (86.2%) identified the "brain dead" patient in the first scenario as dead, 57.2 percent identified the patient in a coma as dead (Scenario 2), and 34.1 percent identified the patient in a PVS as dead (Scenario 3). Nearly one-third (33.5%) were willing to donate the organs of patients they classified as alive for at least one scenario, in seeming violation of the dead donor rule. Most respondents were not willing to violate the dead donor rule, although a substantial minority was. However, the majority of respondents were unaware, misinformed, or held beliefs there were not congruent with current definitions of "brain death." This study highlights the need for more public dialogue and education about "brain death" and organ donation.     

The dead donor rule: lessons from linguistics?

American society traditionally has assumed a univocal notion of "death," largely because we have only one word for it and, until recently, have not needed a more nuanced notion. The reality of death-processes does not preclude the reality of death events. Linguistically, "death" can be understood only as an event; there are other words for the process. Our death vocabulary should expand to reflect multiple events along the process from sickness to decomposition. Depending on context, some death-related events may constitute a more obvious discontinuity than others and more justifiably may be considered "death" within that context. There is no reason to assume a priori that there must be an overarching, unitary concept of death from which all diagnostic criteria must derive. Regarding organ transplantation, the relevant question is not "Is the patient dead?" but rather "Can organs X, Y, Z ... be removed without causing or hastening death or harming the patient?"     

That in the <Emphasis Type="Italic">Martyā</Emphasis> Which is <Emphasis Type="Italic">Amṛta</Emphasis>: a Dialog with Ramchandra Gandhi

This philosophical meditation, which deals with death as question, presence, and even teacher, begins with Ramchandra Gandhi’s (RCG’s) penetrating essay ‘On Meriting Death.’ What does it mean ‘to merit’ death? To provide an answer, I travel through RCG’s corpus, in dialog with contemporary theorists such as Sri Aurobindo, Daya Krishna, and Mukund Lath. RCG implies that the question about ‘meriting’ death, and life, is not and cannot be ‘personal’ or ‘isolated’. For X to die, is for his close and distant samāj a matter of losing him and living without him. Hence meriting death, as also life, is a joint venture which involves deep understanding regarding non-isolation as the heart of the human situation. RCG’s creative thinking, or svarāj in ideas, reaches its peak when he dares to offer an answer of his own to the piercing question kim ā?caryam, ‘what is amazing?’ raised in the Yak?a-pra?na episode of the Mahābhārata. For RCG, the heart of the matter is not the ‘ungraspability’ of one’s unavoidable death, or the perennial search for ‘permanence’ in vain, but our failure to perceive ‘that in the martyā which is am?ta,’ i.e., a sense of solidarity in the face of death, connecting ‘I and Thou,’ which he derives from the icchā m?tyu of his grandfather, the famous Mahatma.     

Adaptive memory: The survival-processing memory advantage is not due to negativity or mortality salience

Recent research has highlighted the adaptive function of memory by showing that imagining being stranded in the grasslands without any survival material and rating words according to their survival value in this situation leads to exceptionally good memory for these words. Studies examining the role of emotions in causing the survival-processing memory advantage have been inconclusive, but some studies have suggested that the effect might be due to negativity or mortality salience. In Experiments 1 and 2, we compared the survival scenario to a control scenario that implied imagining a hopeless situation (floating in outer space with dwindling oxygen supplies) in which only suicide can avoid the agony of choking to death. Although this scenario was perceived as being more negative than the survival scenario, the survival-processing memory advantage persisted. In Experiment 3, thinking about the relevance of words for survival led to better memory for these words than did thinking about the relevance of words for death. This survival advantage was found for concrete, but not for abstract, words. The latter finding is consistent with the assumption that the survival instructions encourage participants to think about many different potential uses of items to aid survival, which may be a particularly efficient form of elaborate encoding. Together, the results suggest that thinking about death is much less effective in promoting recall than is thinking about survival. Therefore, the survival-processing memory advantage cannot be satisfactorily explained by negativity or mortality salience.     

Existential perspectives on death anxiety

Construct validity is the hallmark of Templer's Death Anxiety Scale (1970), which has generated a healthy stream of research of paramount importance in the USA and all over the world. This paper contends that scores on this scale provide valuable scientific knowledge on group norms. To expand the concept of death anxiety it is necessary to supplement empirical with qualitative research. Persons with the same scores may show qualitatively different fears of death, and vice versa. Total reliance on empirical scales may not disclose the depth of bipolar meaning in a "life-death anxiety." Templer's scale is a mixture of fears, phobias, and obsessions with thoughts of illness, cancer, heart disease, and wars. A bipolar "life-death anxiety" continuum requires phenomenology to reach beyond the 15 items to the process of "experiencing." The scale addresses "thoughts" about the death of others even though its items are cast in the first person singular. This provides group norms of a "cognitive-affective" construct, with limited generality cross-culturally. Means do not disclose fully meaningful comparisons between persons or cultures. Death Anxiety as an existential anticipatory mode of "being-in-the-world" is embedded in a personal/genetic/cultural matrix that may vary individually and culturally.     

Flickering admissibility: neuroimaging evidence in the U.S. courts

This article explores the admissibility of neuroimaging evidence in U.S. courts, recognizing various trends in decisions about such evidence.While courts have routinely admitted some neuroimages, such as CT scans and MRI, as proof of trauma and disease, they have been more circumspect about admitting the PET and SPECT scans and fMRI evidence. With the latter technologies, courts have often expressed reservations about what can be inferred from the images. Moreover, courts seem unwilling to find neuroimaging sufficient to prove either insanity or incompetency, but are relatively lenient about admitting neuroimages in death penalty hearings. Some claim that fMRI and "brain fingerprinting" are able to detect deception. Other scholars argue that brain fingerprinting is a dubious concept and that fMRI is not yet sufficiently reliable. Moreover, there are substantial concerns about privacy and the perils of mind reading implicit in such technology. Yet, there is a movement to try to make these new technologies "courtroom ready" in the near future, raising a host of legal, policy, and ethical questions to be answered.     

Loss of Humanness: The Ultimate Trauma

This paper is about chronic illness and its impact on the chronically ill and their loved ones who live through the illness and the eventual death. A new concept is introduced, the concept of "passing": physically ill people may pass as healthy even though they are physically ill. In addition to a discussion about why people choose to pass, two major paradoxes are considered. One concerns the paradox that results from "passing." The paradox is that while the falseness of "passing" keeps the self alive, it also deadens it before death. Specifically, "passing" enables the person with a physical illness to keep his well self alive with others, but results in one feeling dead, disconnected, detached, and inauthentic, before death. The second paradox involves the pressure on the chronically ill person to be heroically agentic in fighting the illness and overcoming it and, also, the pressure for this same person to be totally submissive and compliant with treatment. While in analytic treatment, the ill person can be helped to access authentic emotions and aliveness and to feel the power of authenticity.     

Natural death and the work of perfection.

The historic or traditional Christian view of pain (suffering) and death, especially as preserved by the Christians East (i.e., the Orthodox), is radically opposed to the modern secular obsession with avoidance of pain. Everything about this life has its goal or aim in a mystical reality, the Kingdom of Heaven, for which earthly life is a preparation. While neither illness nor health are seen as ends in themselves, both are viewed as proceeding from the will of God for our benefit and have no ultimate meaning or purpose outside of eternal life. Death may be a relief or an ending of suffering, but in itself it is not "good" but evil. Because they are the embodiment of lived theology, saints' lives can be a sure guide to understanding how to die as a traditional Christian. To illustrate this, I have chosen some examples from the lives of relatively recent saints. I myself am from the Russian Orthodox spiritual tradition, so all but one of my examples come from pre-Revolutionary Russia. The question is not so much whether or not a traditional Christian can countenance physician-assisted suicide, but rather, what is the meaning or purpose of pain and suffering in general. Is it part of the "work of perfection" required of those who wish to enter the Kingdom of Heaven and therefore not to be completely denied?     

Perspectives on Genetic Testing and Return of Results from the First Cohort of Presymptomatically Tested Individuals At Risk of Huntington Disease

This qualitative study gathered opinions about genetic testing from people who received presymptomatic testing for Huntington’s disease (HD) 20–30 years ago and have lived with the implications of that testing for decades. During the last section of a semi-structured interview, participants were asked open-ended questions about their opinions on the importance of autonomy in the decision to be tested for HD, whether a formal HD testing protocol is necessary, whether physician ordering for HD is acceptable without a formal protocol, whether online direct-to-consumer (DTC) genetic testing for HD is acceptable, and whether incidental/secondary findings should be returned in the context of whole exome/genome sequencing. Most—but not all—participants were in favor of an individual’s right to decide whether and when to pursue HD testing, use of a formal HD testing protocol, and returning medically actionable secondary findings. However, the majority of participants were opposed not only to physician ordering and DTC HD testing in the absence of a formal protocol but also to returning a secondary finding of an expanded HD allele. This study presents the opinions of a unique and extremely well-informed cohort on issues that need to be taken into careful consideration by genetic counselors and other medical professionals who are developing genetic testing protocols, making decisions about the availability of genetic tests, and making decisions about whether and how to return incidental findings.     

Hopelessly mortal: The role of mortality salience,immortality and trait self-esteem in personal hope

Do people lose hope when thinking about death? Based on Terror Management Theory, we predicted that thoughts of death (i.e., mortality salience) would reduce personal hope for people low, but not high, in self-esteem, and that this reduction in hope would be ameliorated by promises of immortality. In Studies 1 and 2, mortality salience reduced personal hope for people low in self-esteem, but not for people high in self-esteem. In Study 3, mortality salience reduced hope for people low in self-esteem when they read an argument that there is no afterlife, but not when they read “evidence” supporting life after death. In Study 4, this effect was replicated with an essay affirming scientific medical advances that promise immortality. Together, these findings uniquely demonstrate that thoughts of mortality interact with trait self-esteem to cause changes in personal hope, and that literal immortality beliefs can aid psychological adjustment when thinking about death. Implications for understanding personal hope, trait self-esteem, afterlife beliefs and terror management are discussed.     

Informed consent for the diagnosis of brain death: a conceptual argument

Background

This 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.

Methods

Conceptual, philosophical, and ethical analysis.

Results

I 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.

Conclusions

My 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.

     

TAKING IN MORE OF LIFE

This is a story not only about my father's death but also about how it has affected me and life as I see it. I believe that the circumstances in my life following my father's death are connected to each other and have become my greatest lessons that I have learned in life.     

Interoceptive Deficits,Nonsuicidal Self‐Injury,and Suicide Attempts Among Women with Eating Disorders

People with eating disorders (ED s) have an elevated risk for both nonsuicidal self‐injury (NSSI ) and suicide compared to the general population. This study tests two theoretically derived models examining interoceptive deficits as a risk factor for NSSI , and examining interoceptive deficits, NSSI , fearlessness about death, and pain tolerance as risk factors for suicide. Ninety‐six adult, treatment‐seeking women with ED s completed self‐report questionnaires at a single time point. Interoceptive deficits were significantly associated with NSSI , and NSSI was in turn associated with both pain tolerance and fearlessness about death. Further, pain tolerance was in turn associated with past suicide attempts, although fearlessness about death was not associated with suicide attempts. Interoceptive deficits had a direct association with fearlessness about death but not pain tolerance. Results regarding the relation between interoceptive deficits and suicide attempts were mixed, yet overall suggest that interoceptive deficits are related to suicide attempts largely indirectly, through the effects of mediating variables such as NSSI , fearlessness about death, and pain tolerance. Results suggest that interoceptive deficits and pain tolerance merit further investigation as potential risk factors for fatal and nonfatal self‐harm among individuals with ED s.     

Seeking an ethical and legal way of procuring transplantable organs from the dying without further attempts to redefine human death

Because complex organs taken from unequivocally dead people are not suitable for transplantation, human death has been redefined so that it can be certified at some earlier stage in the dying process and thereby make viable organs available without legal problems. Redefinitions based on concepts of "brain death" have underpinned transplant practice for many years although those concepts have never found universal philosophical acceptance. Neither is there consensus about the clinical tests which have been held sufficient to diagnose the irreversible cessation of all brain function – or as much of it as is deemed relevant – while the body remains alive.     

LESS GOOD BUT NOT BAD: IN DEFENSE OF EPICUREANISM ABOUT DEATH

In this article I defend innocuousism– a weak form of Epicureanism about the putative badness of death. I argue that if we assume both mental statism about wellbeing and that death is an experiential blank, it follows that death is not bad for the one who dies. I defend innocuousism against the deprivation account of the badness of death. I argue that something is extrinsically bad if and only if it leads to states that are intrinsically bad. On my view, sometimes dying may be less good than living, but it is never bad to die.