Brain death, the determination of brain death, and member guidance for brain death accommodation requests

The AAN endorses the perspective of the UDDA that brain death has occurred when the irreversible loss of all functions of the entire brain including the brainstem has been determined. However, the AAN endorses the belief that preserved neuroendocrine function may be present despite irreversible injury of the cerebral hemispheres and brainstem and is not inconsistent with the whole brain standard of death.^{17,20,21,23,–,25}

The AAN recognizes that the fundamental concept underlying the accurate determination of brain death is the irreversibility of injury to the cerebral hemispheres and brainstem.

The AAN endorses that brain death determination is fundamentally a clinical assessment, and that the primary role of ancillary testing is to serve as a surrogate means of assessment when requisite components of the clinical brain death evaluation cannot be adequately performed or interpreted.

The AAN recognizes that the guidelines provided by the American Academy of Neurology for adults, and the Pediatric Section of the SCCM, the Section on Critical Care of the AAP, and the CNS for the pediatric population represent the recognized medical standards for brain death determination.^8,9

The AAN endorses that should an AAN member be opposed to determination of brain death, based on religious or moral conscience, he or she should seek transfer of this responsibility to another qualified physician. Conversely, the AAN endorses that a member who is opposed to indefinite accommodation based on religious or moral conscience should be allowed to transfer the care of a deceased individual to another individual if possible, without reprisal, if continued care is mandated by law or institutional policy.

The AAN endorses that all brain death examinations should be undertaken with the premise that the patient is alive and with that expectation being explicitly communicated to loved ones and lawful surrogates. The AAN recommends that unless precluded by exceptional circumstance, the brain death examination follow rather than precede a candid conversation between the physician responsible for the care of the patient and the patient's lawful surrogate regarding the medical status and prognosis of the patient in whom brain death is being considered.

The AAN recognizes that each case is unique and requires a sensitive and empathetic inquiry intended to establish a relationship of trust. Accordingly, the AAN endorses efforts to identify the underlying reasons for opposition to brain death determination or requests for indefinite accommodation. The goal of doing so is to reconcile differences in a manner satisfactory to loved ones and lawful surrogates, the medical care team, and the institution in which they work.^7,22,26

The AAN endorses continued research intended to ensure that pediatric and adult guidelines accurately identify brain death in all circumstances and are as uniform as possible. These efforts would ideally include the development of a single guideline for both pediatric and adult brain death determination, while respecting the physiologic differences between developing and mature brains.²⁴

The AAN endorses the development of uniform policies within US health care institutions that address brain death and its determination.

The AAN encourages the mandatory incorporation of brain death determination training within neurology and other relevant training programs with the goal of establishing uniform competence in brain death determination.

The AAN endorses the development of institutional programs that credential competence in brain death determination, and that monitor compliance with the aforementioned guidelines.

The AAN endorses witness of the brain death examination by loved ones should the patient's medical caregivers believe that understanding and acceptance of brain death would be improved by this opportunity.

The AAN supports development of programs that provide accurate public and professional education regarding brain death and its determination.¹⁷

Although the AAN strongly endorses the beneficence provided by organ donation, it believes that the primary professional responsibility of its members is to their patients, fulfilled by accurate and timely diagnosis.

The AAN desires to provide lawful guidance for its members faced with requests for accommodation. These requests include objections to brain death determination or the withdrawal of organ-sustaining technology. The AAN strives to achieve reconciliation of the positions of all stakeholders without undermining the professional responsibility of neurologists acting in the best interest of their patients.^7,16

The AAN is respectful of and sympathetic toward requests for limited accommodation based on reasonable and sincere social, moral, cultural, and religious considerations, recognizing that beliefs vary not only between but within religions, and understanding that such requests must be based on the values of the patient and not those of loved ones or other surrogate decision-makers.^{7,15,17,22,27,28}

At the same time, the AAN acknowledges that there is no ethical obligation to provide medical treatment to a deceased person. In the United States, with the exception of New Jersey, there is no legal obligation to provide indefinite accommodation with continued application of organ-sustaining technology to the deceased. The AAN recognizes the potential for harm to the patient, the family, or other patients and the health care team from indefinite accommodation. These potential harms include mistreatment of the newly dead, deprivation of dignity, provision of false hope with resultant distrust, prolongation of the grieving process, undermining of the professional responsibility of the physician to achieve a timely and accurate diagnosis, and an anticipated societal harm arising from a negotiated and inconsistent standard of death.^{17,22,29,–,31}

The AAN encourages members to include provisions for management of requests for accommodation in institutional brain death protocols addressing the conditions and time frame for accommodation.

Despite its respect for cultural and religious perspectives, and its empathy for grieving loved ones, the AAN endorses the implicit position of the UDDA that death is a biological reality that may result from irreversible injury to the heart or brain. Accordingly, the AAN believes that death should be determined by criteria that can be objectively and uniformly assessed in order to demonstrate irreversible loss of circulatory or whole brain function, as supported by the President's Commission.^6,7 Physicians are uniquely qualified and authorized by their training, experience, and licensure to determine that death has occurred by either a circulatory or neurologic mechanism, and are professionally obligated to make this determination in a timely and accurate manner.

Accordingly, the AAN believes that its members have both the moral authority and professional responsibility, when lawful, to perform a brain death evaluation including apnea testing, after informing a patient's loved ones or lawful surrogates of that intention, but without obligation to obtain informed consent. This position is analogous to the authority and responsibility historically granted to the medical profession to determine circulatory death without the requirement for additional informed consent. Although the AAN acknowledges the potential risk of hemodynamic instability during apnea testing, this evaluation can generally be performed safely if the prerequisites included in the guidelines are followed.^9,32

The AAN suggests that when requests for indefinite accommodation occur, all authorized stakeholders in the welfare of the patient, including members of the medical team and designated administrative or legal institutional officials, should be kept apprised of the situation. Involvement of others with recognized mediating skills, including clergy members, mental health professionals, palliative care, or ethics consultants, should be considered.^7,22

The AAN recognizes that when attempts to reconcile disputes pertaining to indefinite accommodation fail, transfer of an individual to another facility, when lawful and feasible, represents a measure of last resort.

The AAN recognizes that when attempts to reconcile disputes pertaining to indefinite accommodation fail, unilateral withdrawal of organ-sustaining technology (other than in pregnant women) over the objection of loved ones is acceptable, when supported by law and institutional policy, and represents a measure of last resort.⁸ In the event that a brain-dead patient is pregnant, the ethical analysis should largely focus on the welfare of the fetus. The AAN recommends that lawful surrogates and loved ones be educated by knowledgeable professionals about relevant law as well as fetal outcome, which is often uncertain. Accordingly, in consideration of fetal welfare, the AAN endorses requests by lawful surrogates and loved ones to accommodate the prolonged use of organ-sustaining technology in a brain-dead pregnant woman of any gestational age with the following considerations. Lawful surrogates and loved ones should be fully informed by knowledgeable professionals regarding the uncertain outcome of prolonged accommodation for the fetus as well as the intention to discontinue organ-sustaining technology from the mother following completion of the pregnancy. The potential for fetal demise or severe fetal injury with or without maternal cardiopulmonary arrest should be specifically addressed. However, the AAN also endorses requests by lawful surrogates and loved ones to withdraw organ-sustaining technology if a fetus has not reached a viable gestational age or if a fetus of any gestational age has sustained brain injury of substantial magnitude. If a fetus has reached the age of gestational viability without brain injury of substantial magnitude, the AAN defers to the law and the conscience of the informed lawful surrogate and loved ones regarding organ-sustaining technology withdrawal decisions. Should one exist, a lawful advance directive expressing the premortal wishes of the brain dead patient regarding the care of her unborn child should be reviewed and considered subject to legal interpretation.^12,33