Although moral distress is now a well-recognized phenomenon among all of the healthcare professions, few evidence-based strategies have been published to address it. In morally distressing situations, the “presenting problem” may be a particular patient situation, but most often signals a deeper unit- or system-centered issue. This article describes one institution’s ongoing effort to address moral distress in its providers. We discuss the development and evaluation of the Moral Distress Consultation Service, an interprofessional, unit/system-oriented approach to addressing and ameliorating moral (...) distress. (shrink)

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in (...) religion can lead to children being potentially subjected to burdensome care in expectation of ‘miraculous’ intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a ‘miracle’ would happen. (shrink)

Ethical dilemmas in critical care may cause healthcare practitioners to experience moral distress: incoherence between what one believes to be best and what occurs. Given that paediatric decision-making typically involves parents, we propose that parents can also experience moral distress when faced with making value-laden decisions in the neonatal intensive care unit. We propose a new concept—that parents may experience “moral schism”—a genuine uncertainty regarding a value-based decision that is accompanied by emotional distress. Schism, unlike moral distress, is not caused (...) by barriers to making and executing a decision that is deemed to be best by the decision-makers but rather an encounter of significant internal struggle. We explore factors that appear to contribute to both moral distress and “moral schism” for parents: the degree of available support, a sense of coherence of the situation, and a sense of responsibility. We propose that moral schism is an underappreciated concept that needs to be explicated and may be more prevalent than moral distress when exploring decision-making experiences for parents. We also suggest actions of healthcare providers that may help minimize parental “moral schism” and moral distress. (shrink)

Moral distress has been the subject of extensive research and debate in the nursing ethics literature since the mid-1980s, but the concept has received comparatively little attention from those working outside of applied ethics. In this article, I defend a care ethical account of moral distress, according to which the phenomenon is the product of an agent’s inability to live up to one of her caring commitments. This account has a number of attractions. First, it places a greater emphasis on (...) the importance of the relationship between the caregiver and her cared-for than that found in previous accounts. Second, it does not make problematic assumptions about the correctness of a caregiver’s moral judgments, as has been claimed in relation to previous accounts of moral distress. Finally, my account allows for a clear conceptual distinction to be drawn between moral distress and other forms of negative moral emotion such as guilt and regret. Earlier accounts draw this distinction by appealing to the causal aetiology of moral distress, but as I show here, such appeals are ultimately unsuccessful unless they are made from an explicitly care ethical starting point. One of the implications of my account is that moral distress has the potential to occur in the context of any caregiving relationship. This claim is explored in the final section of the paper, in relation to student-teacher and parent-child caregiving. (shrink)

A recent online article in the Journal of Medical Ethics, which received wide media coverage, raised the possibility that children are being ‘subjected to torture’ due to the ‘fervent or fundamentalist views’ of their parents. However, the quality of argument in that article was inadequate to sustain such a radical thesis. There was no engagement with the perspectives of different religious traditions about end-of-life care. Instead the authors invoked practices such as male infant circumcision which are wholly irrelevant to the (...) end-of-life theme. There were serious failings in relation to core principles of social and epidemiological research practice: the study based its conclusion on a sample of only six cases and failed to consider even the more obvious confounding features. Rather than demonizing the religious beliefs of parents there should be recognition of the need for mutual respect, dialogue based on an ‘expert–expert relationship’ and collaboration based on ‘shared understanding’. (shrink)