I had been on the phone with Madeleine's mother for fifteen minutes, and she had sobbed throughout. She pleaded with me, “You won't even let our family visit her together. If you really want to help my daughter, you will let us stay with her.” Madeleine, who was twenty‐four years old, was dying of end‐stage acute myeloid leukemia and was intubated in one of our intensive care units. Her intensivist had requested a clinical ethics consultation for potentially inappropriate medical treatment—in my world of clinical ethics consultation, routine stuff. Except that, in March 2020, nothing was routine anymore. The Covid‐19 pandemic calls for creative thinking about ad hoc and post hoc bereavement efforts, and it may result in efforts to revise existing accounts of what constitutes a good death in order to accommodate patients’ and families’ experiences at the end of life during a pandemic .
Patients and families are increasingly turning to crowdfunding to help them cover the cost of medical care. The ethics of crowdfunding has garnered some attention in the bioethical literature. In this paper I examine an ethical aspect of medical crowdfunding (MCF) that has received limited attention: the role of donors. I defend a virtue ethical approach to analyzing the role of donors in MCF. Vicious donation, where donors do not exercise the relevant virtues, can compound some of the ethical risks associated with MCF, as seen in the several recent, high‐profile cases. My primary contention in this paper is that encouraging donors to think about how donating to a particular campaign would measure against the virtues I outline could help to discourage acts of ethically problematic donation to MCF campaigns.
The range of decisions considered permissible in pediatrics is typically understood to involve a balance between patient interests and parental or surrogate authority. In this article, we argue that there is a distinct set of considerations relevant to pediatric decision‐making that is often neglected or unacknowledged in pediatrics—namely, considerations related to patient authenticity. The standard of pediatric authenticity asks not what is best for the patient or what the patient would choose but, rather, what is most consistent with who the patient is. We begin the article with an overview of the best interest standard and suggest that authenticity can elucidate considerations that fall between a child’s strictly medical interests and broader familial or relational interests. Next, we discuss authenticity in greater detail, noting the limits of applying certain philosophical conceptions of authenticity in pediatrics. We then sketch our own account of pediatric authenticity and distinguish it from the related concepts of subjective interests and assent. We conclude with a discussion of three cases illustrating the normative significance of authenticity in a range of situations arising in pediatric medicine.
We present a case in which a fetal diagnosis of complex congenital heart disease and trisomy 18 led to a series of decisions for an infant who was critically ill. The parents wanted everything done. The surgeons believed that surgery would be futile. The parents publicized the case on social media, which led to publicity and pressure on the hospital. The case reveals the intersection of parental values, clinical judgments, ethics consultation, insurance company decisions about reimbursement, and social media publicity. Together, these factors complicate the already delicate ethical deliberations and decisions.
In this paper, we examine healthcare organizations’ responses to high profile cases of doctor–parent disagreement. We argue that, once a conflict crosses a certain threshold of public interest, the stakes of the disagreement change in important ways. They are no longer only the stakes of the child’s interests or who has decision‐making authority, but also the stakes of public trust in healthcare practitioners and organizations and the wide scale spread of medical misinformation. These higher stakes call for robust organization‐level responses. There are responsible and thoughtful ways for healthcare organizations to directly engage with these cases. Hospitals should seek an alliance with the parents around the goal of public discussion and utilize web‐based platforms to provide the public with information about medical conditions, experimental treatments, and how clinical ethics deliberation in hospitals works. We outline five important lessons for healthcare organizations to keep in mind when responding to such cases. Approached with care, these cases could become “teachable moments” for both healthcare organizations and society.
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