Some research is too risky to be conducted on anyone whose life expectancy is more than a few hours. Yet sometimes, the research can still be carried out using subjects who are brain dead or are soon to undergo a terminal wean, and who have articulated values that inclusion in the study can honor. So argues a team of ethicists and researchers at M.D. Anderson Cancer Center, where such research was recently undertaken.

: This paper examines informed consent in relation to research involving the newly dead. Reasons are presented for facilitating advance decision making in relation to postmortem research, and it is argued that the informed consent of family members should be sought when the deceased have not made a premortem decision. Regardless of whether the dead can be harmed, there are two important respects in which family consent can serve to protect the dead: (1) protecting the deceased's body from being used (...) for research that is incompatible with the person's premortem preferences and values and (2) protecting the deceased's body from being subject to disrespectful treatment. These claims are explained and justified, and several objections are critically examined. Additional reasons for securing family consent are presented including to protect them from additional emotional distress, to respect their wishes about wanting to have a say, and to maintain public trust in the medical profession and medical research. The paper also examines the scope of disclosure in relation to postmortem research. (shrink)

Conflicts of interest. None to report. Despite widespread acceptance in the United States of neurological criteria to determine death, clinicians encounter families who object, often on religious grounds, to the categorization of their loved ones as “brain dead.” The concept of “reasonable accommodation” of objections to brain death, promulgated in both state statutes and the bioethics literature, suggests the possibility of compromise between the family’s deeply held beliefs and the legal, professional and moral values otherwise directing clinicians to withdraw medical (...) interventions. Relying on narrative to convey the experience of a family and clinical caregivers embroiled in this complex dilemma, the case analyzed here explores the practical challenges and moral ambiguities presented by the concept of reasonable accommodation. Clarifying the term’s meaning and boundaries, and identifying guidelines for its clinical implementation, could help to reduce uncertainty for both health care professionals and families and, thereby, the incremental moral distress such uncertainty creates. (shrink)

As in science, so in bioethics: if prohibiting conflicts of interest is not feasible, rigorous requirements for disclosure can at least manage them.

We first heard about this case from nurses in one of our intensive care units while we were conducting an inservice. When the session was over, we discussed it between ourselves, and decided that it must have been misrepresented. The case had been presented as one of a teenager who was brain dead, had been so for six months, yet had been brought into the ICU for treatment. We have run into this before, we thought: medical professionals confusing brain death (...) with persistent vegetative state. But, of course, we reasoned, no one can be brain dead for six months. To us, as it would to many, the case sounded like a clinical and ethical impossibility.A week later, we were called by an attending physician from another ICU, at the urging of that unit's nursing staff. They had a patient who was brain dead, whose presence was causing distress among the staff. Ronald Chamberlain, a fifteen-year-old boy, had been a patient at a nearby longterm rehabilitation facility that is equipped to care for ventilator-dependent patients. (shrink)

In a provocative 1974 article entitled “Harvesting the Dead,” Willard Gaylin explored potential uses of “neomorts,” or what are currently referred to as “heart-beating cadavers”—that is, humans determined to be dead by neurological criteria and whose cardiopulmonary function is medically maintained by ventilators, vasopressors, and so forth. Medical research was one of the potential uses Gaylin identified. He pointed out that tests of drugs and medical procedures that would have unacceptable health risks if performed on living human subjects could be (...) performed on neomorts without any health risks. According to Gaylin, the potential benefits of such research could be enormous, including not subjecting patients to ineffective or harmful medical procedures and eliminating delays in providing effective therapies to dying patients. (shrink)

We describe and analyze 13 cases handled by our ethics consultation service (ECS) in which families requested continuation of physiological support for loved ones after death by neurological criteria (DNC) had been declared. These ethics consultations took place between 2005 and 2013. Patients’ ages ranged from 14 to 85. Continued mechanical ventilation was the focal intervention sought by all families. The ECS’s advice and recommendations generally promoted “reasonable accommodation” of the requests, balancing compassion for grieving families with other ethical and (...) moral concerns such as stewardship of resources, professional integrity, and moral distress. In cases we characterized as finitegoal accommodation, a “reasonable accommodation” strategy proved effective in balancing stakeholders’ interests and goals, enabling steady progress toward resolution. When a family objected outright to a declaration of DNC and asked for an indefinite accommodation, the “reasonable accommodation” approach offered clinicians little practical direction, and resolution required definitive action by either the family or the clinical team. Based on our analysis and reflections on these 13 cases, we propose ethically justified and practical guidelines to assist healthcare professionals, administrators, and ECSs faced with similar cases. (shrink)

In 1968, the definition of death in the United States was expanded to include not just death by cardiopulmonary criteria, but also death by neurologic criteria. We explore the way the definition has been modified by the medical and legal communities over the past 50 years and address the medical, legal and ethical controversies associated with the definition at present, with a particular highlight on the Supreme Court of Nevada Case of Aden Hailu.

The esophageal obturator airway is a device used throughout the United States to facilitate artificial respiration of critically ill patients who are not hospitalized. Its use is restricted to persons who are over 15 years old because obturators for children are not available. A protocol submitted to an institutional review board intended to develop EOAs suitable for use in children. The investigators proposed to perform preliminary testing of these devices on children who had sustained irreversible loss of brain function. In (...) its review of this protocol, the IRB had to confront several vexing questions. (shrink)

Federal Institutional Review Board Regulations should be amended to require review of research proposals involving brain dead bodies. IRB review would aid in ensuring the certainty of the brain death determination, the need for the proposed research, and the proper disclosure to family members.