Parent Moral Distress From The Perspectives of Mothers With An Infant Previously Hospitalized in The NICU

BackgroundGiven that having an infant in the NICU is a morally stressful event for parents and preterm birth rates are increasing worldwide, parent moral distress is a matter of public health. While moral distress in the clinical context is already a widely explored phenomenon, the parent moral distress still remains a largely under-explored complex phenomenon. Methods This is a prospective qualitative study using semi-structured interviews of seventeen parents (mothers) who previously had an infant in the NICU. The study conducted between February 2021 and August 2021. A thematic analysis of the data was performed. Results While parents with infants in the NICU initially needed for having their decisions respected by physicians, they ultimately shew a tolerant attitude towards benevolent medical paternalism. However, many physician-related factors (i.e. uncertainty, discrepancy of opinion, operational behavior, lack of communicative or empathetic behavior, previous malpractice) facilitate parent moral distress. The important role of the family pediatrician in creating parent moral distress is highlighted. The same holds for family/social environment – related factors. Furthermore, the role of parent’s internal factors (especially spiritual/existential core values or beliefs) as well as the role of NICU environment-related factors (such as the image of a long-suffering infant, preventing mothers from providing their own milk for their infants and having a skin-to-skin contact with them) in creating parent moral distress are highlighted. Moral residue no more than mild was found. Moreover, parent moral schisma is emerged as a conceptually distinct from moral distress phenomenon. Last, the findings of this study confirm the relational account of parental moral distress offered by Mooney-Doyle and Ulrich. ConclusionsWhile many findings of the present study are in line with previous studies, our data analysis revealed findings which are little recognized in the available literature. Parents showed tolerant attitudes towards benevolent medical paternalism. No more than mild moral residue has been found. The most relevant categories of variables associated with parent moral distress were a) physician-related (various factors), b) parent-related, c) parent’s context (family or broader social)-related, and d) NICU environment-related. Furthermore, parent moral distress and parent moral schisma are conceptualized as conceptually distinct albeit strictly related or overlapping phenomena. The findings of this study support the relational account of parent moral distress.

Ethical dilemmas with little time for reflection: A discussion of the ethics of out-of-hospital refusals

In this article, we consider an approach for ethical decision-making for refusals in the out-of-hospital environment. Autonomy and beneficence are discussed as the two ethical principles central to guiding paramedic decision-making in this context. We describe some situations where the two principles may come into conflict and where the working paramedic may be faced with an ethical dilemma. These cases may involve temptations of medical paternalism, which we argue ought to be avoided if possible. A discussion on navigating between autonomy and beneficence will be presented in order to help paramedics sort through dilemmas when these principles conflict. We argue that when these principles are in conflict, autonomy should primarily be respected – however, we will examine situations where the principle of autonomy cannot be applied and the paramedic should either attempt to rectify the patient’s capacity for autonomous decision-making, or, if not possible, proceed with the principle of beneficence.

Physician outreach during a pandemic: shared or collective responsibility?

In ‘Ethics of sharing medical knowledge with the community: is the physician responsible for medical outreach during a pandemic?’ Strous and Karni note that the revised physician’s pledge in the World Medical Association Declaration of Geneva obligates individual physicians to share medical knowledge, which they interpret to mean a requirement to share knowledge publicly and through outreach. In the context of the COVID-19 pandemic, Strous and Karni defend a form of medical paternalism insofar as the individual physician must reach out to communities who may not want, or know to seek out, medical advice, for reasons of public health and health equity. Strous and Karni offer a novel defence of why physicians ought to intervene even in insular communities, and they offer suggestions for how this could be done in culturally sensitive ways. Yet their view rests on an unfounded interpretation of the Geneva Declaration language. More problematically, their paper confuses shared and collective responsibility, misattributing the scope of individual physician obligations in potentially harmful ways. In response, this reply delineates between shared and collective responsibility, and suggests that to defend the obligation of medical outreach Strous and Karni propose, it is better conceptualised as a collective responsibility of the medical profession, rather than a shared responsibility of individual physicians. This interpretation rejects paternalism on the part of individual providers in favour of a more sensitive and collaborative practice of knowledge sharing between physicians and communities, and in the service of collective responsibility.

Problems with the problem list: challenges of transparency in an era of patient curation

In recent years, the OpenNotes movement and other changes in healthcare have driven institutions to make medical records increasingly transparent. As patients have begun to question and request changes to their Problem Lists, clinicians have come to face the ever more frequent challenge of discerning which changes to make and which to refuse. Now clinicians and patients together choose the list of problems that represent the patient’s current state of health and illness. As the physician’s role slides closer to consultant and the medical paternalism of the twentieth century falls further into the background of our technology-infused present, who holds the power of delineating a patient’s clinical identity? This paper examines the ethical and practical dimensions of this question and proposes a research agenda that aims to answer it. Such explorations are essential to ensuring that the physician remains relevant to patient’s notions of health, illness, intervention, and healing.

Selecting Treatment Options and Choosing Between them: Delineating Patient and Professional Autonomy in Shared Decision-Making

Professional control in the selection of treatment options for patients is changing. In light of social and legal developments emphasising patient choice and autonomy, and restricting medical paternalism and judicial deference, this article examines how far patients and families can demand NHS treatment in England and Wales. It considers situations where the patient is an adult with capacity, an adult lacking capacity and a child. In all three cases, there is judicial support for professional autonomy, but there are also inconsistencies that have potential to elevate the importance of patient and family preferences. In combination, they may be perceived by healthcare professionals as an obligation to follow patient preferences, even where doing so conflicts with other professional obligations. It is argued that a more nuanced approach to shared decision-making could help clarify the boundaries of decision-making responsibility.

Gender and cultural understandings in medical nonindicated interventions: A critical discussion of attitudes toward nontherapeutic male circumcision and hymen (re)construction

Hymen (re)construction and nontherapeutic male circumcision are medical nonindicated interventions that give rise to specific ethical concerns. In Europe, hymen (re)construction is generally more contested among medical professionals than male circumcision. Yet, from a standard biomedical framework, guided by the principles of autonomy, beneficence, nonmaleficence, and justice, circumcision of boys is, as this article explains, more problematic than hymen (re-) construction. While there is a growing debate on the acceptability of infant circumcision, in the case of competent minors and adults the surgery is not questioned. In the case of hymenoplasty, usually requested by a competent patient, it is recommended to only perform the operation after extensive counseling and if there are compelling conditions. The article further explores why attitudes of medical professionals toward both surgeries diverge and seeks to explain how this is largely informed by gendered and socio-cultural understandings. The article further raises critical questions on medical paternalism and the role of counseling.

Beyond autonomy: Care ethics for midwifery and the humanization of birth

The bioethical principle of respect for a person’s bodily autonomy is central to biomedical and healthcare ethics. In this article, we argue that this concept of autonomy is often annulled in the maternity field, due to the maternal two-in-one body (and the obstetric focus on the foetus over the woman) and the history of medical paternalism in Western medicine and obstetrics. The principle of respect for autonomy has therefore become largely rhetorical, yet can hide all manner of unethical practice. We propose that large institutions that prioritize a midwife–institution relationship over a midwife–woman relationship are in themselves unethical and inimical to the midwifery philosophy of care. We suggest that a focus on care ethics has the potential to remedy these problems, by making power relationships visible and by prioritizing the relationship above abstract ethical principles.