More Than “Spending Time with the Body”: The Role of a Family’s Grief in Determinations of Brain Death Abstract In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath.

US Hospice Structure and its Implications for the “Right to Die” Debate Abstract This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others (FBO). A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide (PAS). The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents.

What Is Enough? Sufficiency, Justice, and Health Abstract Carina Fourie and Annette Rid’s edited volume What Is Enough? Sufficiency, Justice, and Health comprises fifteen original contributions which explore the possibility of a sufficientarian approach to healthcare priority setting and resource allocation. Sufficientarianism is a well-established theory of distributive justice, which tells us that justice requires that each person has “enough,” and assigns particular importance to a threshold level of goods under which no person must fall. Sufficiency is under-explored as a distributive principle in the healthcare context, and this book makes a strong case for its inclusion among more familiar principles of justice such as utility, priority to the worst off, and equality.

All Across the Universe: Bioethics Across Cultures

A Response to Meyerson’s Defence of the American Right to Try Abstract This comment responds to a defence of the right to try, a law adopted by the United States and many state governments that seeks to expand access to experimental drugs. In defending the right to try, Meyerson argues that it is part of a broader rights-based approach for patient access to innovation. But a drug that is still part of the experimental process may not be an innovation—indeed, it may be a failure and even harmful or dangerous. Further, this approach does not weigh other rights that may be at stake such as the property rights of the drug maker or the rights of future patients seeking access to cures. Lastly, research has found that many patients often fail to receive recommended treatments and preventive care from their providers, let alone experimental or innovative therapies. These policy problems suggest that there is a need for patients to have a greater involvement and role in their care and in how research funding is made, but the right to try fails to address these problems.

Competing Ethical Interests Regarding Privacy and Accountability in Psychotherapy Abstract “Jane” is a mother of two, who was referred for psychotherapy. However, Jane had misgivings about engaging in the offered psychotherapy because of threats made by her domestically violent partner. The therapy sessions are audio recorded for the purpose of professional supervision and clinician reflective practices. Jane’s partner had threatened to subpoena the therapy recordings to legally separate Jane from her children. This article focuses on how three different parts of Jane’s multidisciplinary care (i.e. clinicians, policy professionals and medico-legal professionals) exhibit different competing ethical priorities. Psychotherapeutic clinicians private use of audio recordings of the therapy enhances patient care and their own professional development but with the risk of concealing possible unethical behaviour by either party. Medico-legal access to the therapy recordings preserves potentially relevant evidence in the pursuit of justice but risks the interpretation of the psychotherapeutic information outside of the therapeutic context. Policies advocating the inclusion of the therapy recordings in the medical record improves clinician (and health service) accountability but risks harming the vulnerable patient due to threats to patient-therapist confidentiality.

Right to Try: In response

Clarifying legal tests: Who a parent is and how to warn of unknown risks

Epistemic Virtue, Prospective Parents and Disability Abortion Abstract Research shows that a high majority of parents receiving prenatal diagnosis of intellectual disability terminate pregnancy. They have reasons for rejecting a child with intellectual disabilities—these reasons are, most commonly, beliefs about quality of life for it or them. Without a negative evaluation of intellectual disability, their choice makes no sense. Disability-based abortion has been critiqued through virtue ethics for being inconsistent with admirable moral character. Parental selectivity conflicts with the virtue of acceptingness (the commitment to welcome whatever child comes naturally) and exhibits the vice of wilfulness (the project of picking and choosing what children one will take). In this paper I claim that, beyond failures of moral virtue, disability abortion often involves failures of epistemic virtue on the part of parents. I argue two things: parents believe something false, or at least contested, about life with intellectual disability—and they do so because they are not epistemically conscientious. I first explain why a central motivation for disability abortion—that it prevents harm to the child—is mistaken. I next give a brief account of intellectual virtue and culpable ignorance. I then indicate why many parents fail to be intellectually virtuous when choosing to terminate pregnancy. I focus on elimination of intellectual disability and have little to say about physical and sensory impairments.

Maqasid al-Shariah Based Islamic Bioethics: A Comprehensive Approach Abstract Maqasid al-Shariah based Islamic bioethics is an Islamic bioethics concept which uses the objectives of the Shariah (maqasid al-Shariah) as its approach in analysing and assessing bioethical issues. Analysis based on maqasid al-Shariah based Islamic bioethics will examine any bioethical issues from three main aspects namely intention, method, and output or final goal of the studied issues. Then, the evaluation will be analysed from human interest hierarchy, inclusivity, and degree of certainty. The Islamic bioethics concept is a manifestation of dynamic Islamic jurisprudence which can overcome new complex and complicated bioethical issues such as tri-parent baby technology issues. Therefore, this article will introduce and explain the concept of maqasid al-Shariah based Islamic bioethics and outline a general guidance of maqasid al-Shariah based Islamic bioethics to determine a maqṣad (objective) based on standards of human good or well-being (maslahah) and harm (mafsadah).