A Framework for Revisiting Brain Death: Evaluating Awareness and Attitudes Toward the Neuroscientific and Ethical Debate Around the American Academy of Neurology Brain Death Criteria.

BACKGROUND: There remains a lack of awareness around the American Academy of Neurology (AAN) procedural criteria for brain death and the surrounding controversies, leading to significant practice variability. This survey study assessed for existing knowledge and attitude among healthcare professionals regarding procedural criteria and potential change after an educational intervention. METHODS: Healthcare professionals with increased exposure to brain injury at Mayo Clinic hospitals in Arizona and Florida were invited to complete an online survey consisting of 2 iterations of a 14-item questionnaire, taken before and after a 30-minute video educational intervention. The questionnaire gathered participants' opinion of (1) their knowledge of the AAN procedural criteria, (2) whether these criteria determine complete, irreversible cessation of brain function, and (3) on what concept of death they base the equivalence of brain death to biological death. RESULTS: Of the 928 people contacted, a total of 118 and 62 participants completed the pre-intervention and post-intervention questionnaire, respectively. The results show broad, unchanging support for the concept of brain death (86.8%) and that current criteria constitute best practice. While 64.9% agree further that the loss of consciousness and spontaneous breathing is sufficient for death, contradictorily, 37.6% believe the loss of additional integrated bodily functions such as fighting infection is necessary for death. A plurality trusts these criteria to demonstrate loss of brain function that is irreversible (67.6%) and complete (43.6%) at baseline, but there is significantly less agreement on both at post-intervention. CONCLUSION: Although there is consistent support that AAN procedural criteria are best for clinical practice, results show a tenuous belief that these criteria determine irreversible and complete loss of all brain function. Despite support for the concept of brain death first developed by the President's Council, participants demonstrate confusion over whether the loss of consciousness and spontaneous breath are truly sufficient for death.

Legislative Enforcement of Nonconsensual Determination of Neurological (Brain) Death in Muslim Patients: A Violation of Religious Rights.

Death is defined in the Quran with a single criterion of irreversible separation of the ruh (soul) from the body. The Quran is a revelation from God to man, and the primary source of Islamic knowledge. The secular concept of death by neurological criteria, or brain death, is at odds with the Quranic definition of death. The validity of this secular concept has been contested scientifically and philosophically. To legitimize brain death for the purpose of organ donation and transplantation in Muslim communities, Chamsi-Pasha and Albar (concurring with the US President's Council on Bioethics) have argued that irreversible loss of capacity for consciousness and breathing (apneic coma) in brain death defines true death in accordance with Islamic sources. They have postulated that the absence of nafs (personhood) and nafas (breath) in apneic coma constitutes true death because of departure of the soul (ruh) from the body. They have also asserted that general anesthesia is routine in brain death before surgical procurement. Their argument is open to criticism because: (1) the ruh is described as the essence of life, whereas the nafs and nafas are merely human attributes; (2) unlike true death, the ruh is still present even with absent nafs and nafas in apneic coma; and (3) the routine use of general anesthesia indicates the potential harm to brain-dead donors from surgical procurement. Postmortem general anesthesia is not required for autopsy. Therefore, the conclusion must be that legislative enforcement of nonconsensual determination of neurological (brain) death and termination of life-support and medical treatment violates the religious rights of observant Muslims.

Neuroscience and Brain Death Controversies: The Elephant in the Room.

The conception and the determination of brain death continue to raise scientific, legal, philosophical, and religious controversies. While both the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research in 1981 and the President's Council on Bioethics in 2008 committed to a biological definition of death as the basis for the whole-brain death criteria, contemporary neuroscientific findings augment the concerns about the validity of this biological definition. Neuroscientific evidentiary findings, however, have not yet permeated discussions about brain death. These findings have critical relevance (scientifically, medically, legally, morally, and religiously) because they indicate that some core assumptions about brain death are demonstrably incorrect, while others lack sufficient evidential support. If behavioral unresponsiveness does not equate to unconsciousness, then the philosophical underpinning of the definition based on loss of capacity for consciousness as well as the criteria, and tests in brain death determination are incongruent with empirical evidence. Thus, the primary claim that brain death equates to biological death has then been de facto falsified. This conclusion has profound philosophical, religious, and legal implications that should compel respective authorities to (1) reassess the philosophical rationale for the definition of death, (2) initiate a critical reappraisal of the presumed alignment of brain death with the theological definition of death in Abrahamic faith traditions, and (3) enact new legislation ratifying religious exemption to death determination by neurologic criteria.

A Response to the Legitimacy of Brain Death in Islam.

Brain death is a novel construct of death for the procurement of transplantable organs. Many authoritative Islamic organizations and governments have endorsed brain death as true death for organ donation. Many commentators have reiterated the misconception that the Quranic text does not define death. We respond by clarifying: (1) the Quran does define death as biologic disintegration and clearly distinguishes it from the dying process, (2) brain death belongs scientifically within the spectrum of neurologic disorders of consciousness and should not be confused with death, and (3) religious and legal discord about brain death has grown in jurisdictions worldwide. We urge for public transparency and truthfulness about brain death and the accommodation and respect of religious objection to the determination of death by neurologic criteria.

Campaigning for Organ Donation at Mosques.

There is a trend of recruiting faith leaders at mosques to overcome religious barriers to organ donation, and to increase donor registration among Muslims. Commentators have suggested that Muslims are not given enough information about organ donation in religious sermons or lectures delivered at mosques. Corrective actions have been recommended, such as funding campaigns to promote organ donation, and increasing the availability of organ donation information at mosques. These actions are recommended despite published literature expressing safety concerns (i.e., do no harm) in living and end-of-life organ donation. Living donors require life-long medical follow-up and treatment for complications that can appear years later. Scientific and medical controversies persist regarding the international guidelines for death determination in end-of-life donation. The medical criteria of death lack validation and can harm donors if surgical procurement is performed without general anesthesia and before biological death. In the moral code of Islam, the prevention of harm holds precedence over beneficence. Moral precepts described in the Quran encourage Muslims to be beneficent, but also to seek knowledge prior to making practical decisions. However, the Quran also contains passages that demand honesty and truthfulness when providing information to those who are seeking knowledge. Currently, information is limited to that which encourages donor registration. Campaigning for organ donation to congregations in mosques should adhere to the moral code of complete, rather than selective, disclosure of information. We recommend as a minimal standard the disclosure of risks, uncertainties, and controversies associated with the organ donation process.

When Brain Death Belies Belief.

The case of Jahi McMath has reignited a discussion concerning how society should define death. Despite pronouncing McMath brain dead based on the American Academy of Neurology criteria, the court ordered continued mechanical ventilation to accommodate the family's religious beliefs. Recent case law suggests that the potential for a successful challenge to the neurologic criteria of death provisions of the Uniform Determination of Death Act are greater than ever in the majority of states that have passed religious freedom legislation. As well, because standard ethical claims regarding brain death are either patently untrue or subject to legitimate dispute, those whose beliefs do not comport with the brain death standard should be able to reject it.

Ethical challenges with deactivation of durable mechanical circulatory support at the end of life: left ventricular assist devices and total artificial hearts.

Left ventricular assist devices (LVADs) and total artificial hearts (TAHs) are surgically implanted as permanent treatment of unrecoverable heart failure. Both LVADs and TAHs are durable mechanical circulatory support (MCS) devices that can prolong patient survival but also alter end-of-life trajectory. The permissibility of discontinuing assisted circulation is controversial because device deactivation is a life-ending intervention. Durable MCS is intended to successfully replace native physiological functions in heart disease. We posit that the presence of new lethal pathophysiology (ie, a self-perpetuating cascade of abnormal physiological processes causing death) is a central element in evaluating the permissibility of deactivating an LVAD or a TAH. Consensual discontinuation of durable MCS is equivalent with allowing natural death when there is an onset of new lethal pathophysiology that is unrelated to the physiological functions replaced by an LVAD or a TAH. Examples of such lethal conditions include irreversible coma, circulatory shock, overwhelming infections, multiple organ failure, refractory hypoxia, or catastrophic device failure. In all other situations, deactivating the LVAD/TAH is itself the lethal pathophysiology and the proximate cause of death. We postulate that the onset of new lethal pathophysiology is the determinant factor in judging the permissibility of the life-ending discontinuation of a durable MCS.

The ethics of limiting informed debate: censorship of select medical publications in the interest of organ transplantation.

Recently, several articles in the scholarly literature on medical ethics proclaim the need for "responsible scholarship" in the debate over the proper criteria for death, in which "responsible scholarship" is defined in terms of support for current neurological criteria for death. In a recent article, James M. DuBois is concerned that academic critiques of current death criteria create unnecessary doubt about the moral acceptability of organ donation, which may affect the public's willingness to donate. Thus he calls for a closing of the debate on current death criteria and for journal editors to publish only critiques that "substantially engage and advance the debate." We argue that such positions as DuBois' are a threat to responsible scholarship in medical ethics, especially scholarship that opposes popular stances, because it erodes academic freedom and the necessity of debate on an issue that is literally a matter of life and death, no matter what side a person defends.

No-touch time in donors after cardiac death (nonheart-beating organ donation).

PURPOSE OF REVIEW: To evaluate arterial pulselessness and the no-touch time of 5 min in defining irreversible cessation of cardiorespiratory functions in nonheart-beating donation (NHBD). RECENT FINDINGS: Experimental NHBD studies identified compensatory neurohumoral mechanisms elicited in controlled terminal shock after withdrawal of life support. The neurohumoral mechanisms can preserve the viability of the cardiovascular and central nervous systems by: 1) diverting systemic blood flow from nonvital to vital organs; and 2) maintaining the perfusion pressure (arterial to venous pressure gradient minus interstitial tissue pressure) and microcirculation in vital organs. These compensatory mechanisms cause an early onset of splanchnic hypoperfusion and antemortem ischaemia of transplantable organs and preclude irreversible cessation of cardiorespiratory functions after brief periods of circulatory arrest. Allograft ischaemia is associated with primary nonfunction or delayed function in transplant recipients similar in aetiology to organ dysfunction in the postresuscitation phase of shock. SUMMARY: In-situ perfusion can reverse ceased cardiac and neurological functions after arterial pulselessness and a no-touch time of 5 min in experimental models. Perfusion pressures are superior to arterial pulselessness in determining reversibility of ceased cardiac and neurological functions in circulatory arrest. Utilizing physiologically relevant circulatory and neurological parameters in NHBD protocols is essential for ascertaining irreversible cessation of vital functions in donors.

Transparency and accountability in mass media campaigns about organ donation: a response to Morgan and Feeley.

We respond to Morgan and Feeley's critique on our article "Mass Media in Organ Donation: Managing Conflicting Messages and Interests." We noted that Morgan and Feeley agree with the position that the primary aims of media campaigns are: "to educate the general public about organ donation process" and "help individuals make informed decisions" about organ donation. For those reasons, the educational messages in media campaigns should not be restricted to "information from pilot work or focus groups" but should include evidence-based facts resulting from a comprehensive literature research. We consider the controversial aspects about organ donation to be relevant, if not necessary, educational materials that must be disclosed in media campaigns to comply with the legal and moral requirements of informed consent. With that perspective in mind, we address the validity of Morgan and Feeley's claim that media campaigns have no need for informing the public about the controversial nature of death determination in organ donation. Scientific evidence has proven that the criteria for death determination are inconsistent with the Uniform Determination of Death Act and therefore potentially harmful to donors. The decision by campaign designers to use the statutory definition of death without disclosing the current controversies surrounding that definition does not contribute to improved informed decision making. We argue that if Morgan and Feeley accept the important role of media campaigns to enhance informed decision making, then critical controversies should be disclosed. In support of that premise, we will outline: (1) the wide-spread scientific challenges to brain death as a concept of death; (2) the influence of the donor registry and team-huddling on the medical care of potential donors; (3) the use of authorization rather than informed consent for donor registration; (4) the contemporary religious controversy; and (5) the effects of training desk clerks as organ requestors at the Department of Motor Vehicles offices. We conclude that organ donation is a medical procedure subject to all the ethical obligations that the medical profession must uphold including that of transparency and truthfulness.

Brain-dead patients are not cadavers: the need to revise the definition of death in Muslim communities.

The utilitarian construct of two alternative criteria of human death increases the supply of transplantable organs at the end of life. Neither the neurological criterion (heart-beating donation) nor the circulatory criterion (non-heart-beating donation) is grounded in scientific evidence but based on philosophical reasoning. A utilitarian death definition can have unintended consequences for dying Muslim patients: (1) the expedited process of determining death for retrieval of transplantable organs can lead to diagnostic errors, (2) the equivalence of brain death with human death may be incorrect, and (3) end-of-life religious values and traditional rituals may be sacrificed. Therefore, it is imperative to reevaluate the two different types and criteria of death introduced by the Resolution (Fatwa) of the Council of Islamic Jurisprudence on Resuscitation Apparatus in 1986. Although we recognize that this Fatwa was based on best scientific evidence available at that time, more recent evidence shows that it rests on outdated knowledge and understanding of the phenomenon of human death. We recommend redefining death in Islam to reaffirm the singularity of this biological phenomenon as revealed in the Quran 14 centuries ago.

Distress from voluntary refusal of food and fluids to hasten death: what is the role of continuous deep sedation?

In assisted dying, the end-of-life trajectory is shortened to relieve unbearable suffering. Unbearable suffering is defined broadly enough to include cognitive (early dementia), psychosocial or existential distress. It can include old-age afflictions that are neither life-threatening nor fatal in the "vulnerable elderly". The voluntary refusal of food and fluids (VRFF) combined with continuous deep sedation (CDS) for assisted dying is legal. Scientific understanding of awareness of internal and external nociceptive stimuli under CDS is rudimentary. CDS may blunt the wakefulness component of human consciousness without eradicating internal affective awareness of thirst and hunger. Patients may suffer because of the slow dying process following dehydration and starvation. The difficulty to adequately control distress, without bringing the dying process to a rapid conclusion by lethal pharmacological interventions, can cause feelings of guilt among hospice and medical staff. Furthermore, the double-effect principle is not applicable in these situations because the primary objective of VRFF is to hasten death. Legal and societal debate should focus on sharpening the boundaries between assisted dying and palliative care. This separation is necessary to: 1) uphold trust in the patient-phyician relationship, and 2) preserve integrity and ethics of the medical profession.

Mass media campaigns and organ donation: managing conflicting messages and interests.

Mass media campaigns are widely and successfully used to change health decisions and behaviors for better or for worse in society. In the United States, media campaigns have been launched at local offices of the states' department of motor vehicles to promote citizens' willingness to organ donation and donor registration. We analyze interventional studies of multimedia communication campaigns to encourage organ-donor registration at local offices of states' department of motor vehicles. The media campaigns include the use of multifaceted communication tools and provide training to desk clerks in the use of scripted messages for the purpose of optimizing enrollment in organ-donor registries. Scripted messages are communicated to customers through mass audiovisual entertainment media, print materials and interpersonal interaction at the offices of departments of motor vehicles. These campaigns give rise to three serious concerns: (1) bias in communicating information with scripted messages without verification of the scientific accuracy of information, (2) the provision of misinformation to future donors that may result in them suffering unintended consequences from consenting to medical procedures before death (e.g, organ preservation and suitability for transplantation), and (3) the unmanaged conflict of interests for organizations charged with implementing these campaigns, (i.e, dual advocacy for transplant recipients and donors). We conclude the following: (1) media campaigns about healthcare should communicate accurate information to the general public and disclose factual materials with the least amount of bias; (2) conflicting interests in media campaigns should be managed with full public transparency; (3) media campaigns should disclose the practical implications of procurement as well as acknowledge the medical, legal, and religious controversies of determining death in organ donation; (4) organ-donor registration must satisfy the criteria of informed consent; (5) media campaigns should serve as a means of public education about organ donation and should not be a form of propaganda.