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)

Background:Collaboration between physicians and nurses is key to improving patient care. We know very little about collaboration and interdisciplinary practice in African healthcare settings.Research question/aim:The purpose of this study was to explore the ethical challenges of interdisciplinary collaboration in clinical practice and education in Botswana Participants and research context: This qualitative descriptive study was conducted with 39 participants (20 physicians and 19 nurses) who participated in semi-structured interviews at public hospitals purposely selected to represent the three levels of hospitals in (...) Botswana (referral, district, and primary).Ethical considerations:Following Institutional Review Board Approval at the University of Pennsylvania and the Ministry of Health in Botswana, participants’ written informed consent was obtained.Findings:Respondents’ ages ranged from 23 to 60 years, and their duration of work experience ranged from 0.5 to 32 years. Major qualitative themes that emerged from the data centered on the nature of the work environment, values regarding nurse–doctor collaboration, the nature of such collaboration, resources available for supporting collaboration and the smooth flow of work, and participants’ views about how their work experiences could be improved.Discussion:Participants expressed concerns that their work environment compromised their ability to provide high-quality and safe care to their patients. The physician staffing structure was described as consisting of a few specialists at the top, a vacuum in the middle that should be occupied by senior doctors, and junior doctors at the bottom—and not a sufficient number of nursing staff.Conclusion:Collaboration between physicians and nurses is critical to optimizing patients’ health outcomes. This is true not only in the United States but also in developing countries, such as Botswana, where health care professionals reported that their ethical challenges arose from resource shortages, differing professional attitudes, and a stressful work environment. (shrink)

Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life—including fatigue, pain, dyspnea, and anxiety—with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required (...) a diagnosis of 6 months to live and the discontinuation of all curative treatments. The Concurrent Care Provision of the United States’ Affordable Care Act eliminated the need to forgo curative therapies in order to enroll in hospice for children in Medicaid or Children’s Health Insurance Program. Concurrent care for children can help mitigate the tension families experience in choosing between essential forms of care, as well as contribute to improved end-of-life outcomes for the child and possibly bereavement outcomes for the family. Understanding concurrent care for children from a social justice perspective has important advocacy and research implications for hospice and palliative care clinicians providing care for children and their families. We apply Powers and Faden’s theory of social justice “as the moral foundation of public health and health policy” to the provision of concurrent care to children near end of life and families in the United States. The goals of applying this theory are to explore additional insights and perspectives into concurrent care policy may provide and to assess the usefulness of this theory when applied to end-of-life health policy. We argue that concurrent care policy is socially just since it has potential to promote well-being in vulnerable children and families and can limit the inequity children at end-of-life experience in access to high-quality hospice care. (shrink)