Stephen Campbell, Connie Ulrich, and Christine Grady argue that we need to a broader understanding of moral distress – broader, that is, than the one commonly used within nursing-ethics and, more recently, healthcare ethics in general. On their proposed definition, moral distress is any self-directed negative attitude we might have in response to viewing ourselves as participating in a morally undesirable situation. While being in general agreement with much of what Campbell et al. say, I make two suggestions. First, in (...) order to distinguish moral distress that is specifically related to the roles and responsibilities of healthcare-workers from other kinds of moral distress, it would be useful for the broadened definition to contain an explicit reference to the distinctive situation and challenges faced by healthcare-workers. Second, whereas Campbell et al. write in a manner that suggests that there is very little that is positive or redeeming about moral distress, we should also ask if there is anything morally good about such distress. I suggest that the disposition to respond with moral distress to situations that call for it can plausibly be seen as a virtue on the part of healthcare-workers. The moral value of responses of appropriate moral distress is positive (because it is a display of virtue on the part of the healthcare-worker), whereas the state of affairs that moral distress is called for is bad and regrettable. (shrink)

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both (...) explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. (shrink)

The concept of moral distress comes from nursing ethics, and was initially defined as ‘…when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action’. There is a large body of literature associated with moral distress, yet multiple definitions now exist, significantly limiting its usefulness. We undertook a systematic review of the argument-based bioethics literature on this topic as the basis for a critical appraisal, identifying 55 papers for analysis. (...) We found that moral distress is most frequently framed around individual experiences of distress in relation to local practices and constraints, and understood in terms of power relations and workplace hierarchies. This understanding is directly derived from, and often still seen as specific to, nursing. Frequently the perspective of the morally distressed individual is privileged. Understandings of moral distress have evolved towards an ‘occupational health approach’, with the assumption that moral distress should be measured and prevented. Counter-perspectives were identified, highlighting conceptual problems. Based on our review, we propose a redefinition of moral distress: ‘Ethical unease or disquiet resulting from a situation where a clinician believes they have contributed to avoidable patient or community harm through their involvement in an action, inaction or decision that conflicts with their own values’. This definition is specific enough for research use, anchored in clinicians’ professional responsibilities and concerns about harms to patients, framed relationally rather than hierarchically, and amenable to multiple perspectives on any given morally distressing situation. (shrink)

Volume 20, Issue 6, June 2020, Page 70-72.

As the global prevalence of Alzheimer’s disease increases, the need to understand family caregiving becomes increasingly pressing. I argue that there is an under-recognized form of caregiving for people with early to mid-stage Alzheimer’s disease. This type of caregiving involves, roughly, helping people reason through their values. It arises along with the loss of the capacity for executive functioning. Moreover, it is prone to give rise to moral distress, which is an under-recognized vulnerability in family caregiving. Categories of family caregiving (...) thus need to be expanded, and moral distress needs to be recognized not only in the context of nursing. (shrink)