Objective Moral distress is a complex phenomenon experienced by healthcare professionals. This study examined the relationships between key dimensions of Organizational Culture in Healthcare (OCHC)—perceived psychological safety, ethical climate, patient safety—and healthcare professionals’ perception of moral distress.Design Cross-sectional surveySetting Pediatric and adult critical care medicine, and adult hospital medicine healthcare professionals in the United States.Participants Physicians (n = 260), nurses (n = 256), and advanced practice providers (n = 110) participated in the study.Main outcome measures Three dimensions of OCHC were (...) measured using validated questionnaires: Olson’s Hospital Ethical Climate Survey, Agency for Healthcare Research and Quality’s Patient Safety Culture Survey, and Edmondson’s Team Psychological Safety Survey. The perception of moral distress was measured using the Moral Distress Amidst a Pandemic Survey. The hypothesized relationships between various dimensions were tested with structural equation modeling (SEM).Results Adequate model fit was achieved in the SEM: a root-mean-square error of approximation =0.072 (90% CI 0.069 to 0.075), standardized root mean square residual = 0.056, and comparative fit index =0.926. Perceived psychological safety (β= −0.357, p <.001) and patient safety culture (β = −0.428, p<.001) were negatively related to moral distress experience. There was no significant association between ethical climate and moral distress (β = 0.106, p = 0.319). Ethical Climate, however, was highly correlated with Patient Safety Culture (factor correlation= 0.82).Conclusions We used structural equation model to test a theoretical model of multi-dimensional organizational culture and healthcare climate (OCHC) and moral distress.Significant associations were found, supporting mitigating strategies to optimize psychological safety and patient safety culture to address moral distress among healthcare professionals. Future initiatives and studies should account for key dimensions of OCHC with multi-pronged targets to preserve the moral well-being of individuals, teams, and organizations. (shrink)

The unique role of the nurse ethicist in the clinical setting is one meant to enhance the ethical capacity of nurses, and front-line healthcare providers. As a nurse ethicist, it is also my goal to enhance the ethical climate of each individual work area, patient care unit, and the broader institution by encouraging ethical conversations, navigating ethical dilemmas, and seeking creative solutions to minimize moral distress and burnout. To provide preventive ethics support and education, I began regularly visiting patient care (...) areas for ethics rounds, which I affectionately named “E-walks” (for Ethics Walks). I will discuss and reflect upon the lessons that have emerged as three key components of “E-Walks”: Recognition, Solidarity and Dialogue. These themes will speak to the unique presence and availability of a nurse ethicist as a valuable resource to front-line healthcare providers who face ethical dilemmas and morally concerning cases. I will go on to argue and demonstrate that my role as the nurse ethicist lies at the intersection of bioethics and the theoretical framework of the “ethic of care,” which is focused on building, creating, and sustaining caring interprofessional relationships through the work of ethics, nursing, and education. (shrink)

Moral distress (MD) is well-documented within the nursing literature and occurs when constraints prevent a correct course of action from being implemented. The measured frequency of MD has increased among nurses over recent years, especially since the COVID-19 Pandemic. MD is less understood among nurse leaders than other populations of nurses. A qualitative systematic review was conducted with the aim to synthesize the experiences of MD among nurse leaders. This review involved a search of three databases (Medline, CINAHL, and APA (...) PsychINFO) which resulted in the retrieval of 303 articles. PRISMA review criteria guided authors during the article review and selection process. Following the review, six articles were identified meeting review criteria and quality was assessed using the Critical Appraisal Skills Programme (CASP) Checklist for qualitative studies. No ethical review was required for this systematic review. The six studies included in this review originated from the United States, Brazil, Turkey, and Iran. Leadership roles ranged from unit-based leadership to executive leadership. Assigned quality scores based upon CASP criteria ranged from 6 to 9 (moderate to high quality). Three analytical themes emerged from the synthesis: (1) moral distress is consuming; (2) constrained by the system; and (3) adapt to overcome. The unique contributors of MD among nurse leaders include the leadership role itself and challenges navigating moral situations as they arise. The nurse leader perspective should be considered in the development of future MD interventions. (shrink)

Stresses on healthcare systems and moral distress among clinicians are urgent, intertwined bioethical problems in contemporary healthcare. Yet conceptualizations of moral distress in bioethical inquiry often overlook a range of routine threats to professional integrity in healthcare work. Using examples from our research on frontline physicians working during the COVID-19 pandemic, this article clarifies conceptual distinctions between moral distress, moral injury, and moral stress and illustrates how these concepts operate together in healthcare work. Drawing from the philosophy of healthcare, we (...) explain how moral stress results from the normal operations of overstressed systems; unlike moral distress and moral injury, it may not involve a sense of powerlessness concerning patient care. The analysis of moral stress directs attention beyond the individual, to stress-generating systemic factors. We conclude by reflecting on how and why this conceptual clarity matters for improving clinicians’ professional wellbeing, and offer preliminary pathways for intervention. (shrink)

Background The COVID-19 pandemic causes moral challenges and moral distress for healthcare professionals and, due to an increased work load, reduces time and opportunities for clinical ethics support services. Nevertheless, healthcare professionals could also identify essential elements to maintain or change in the future, as moral distress and moral challenges can indicate opportunities to strengthen moral resilience of healthcare professionals and organisations. This study describes 1) the experienced moral distress, challenges and ethical climate concerning end-of-life care of Intensive Care Unit (...) staff during the first wave of the COVID-19 pandemic and 2) their positive experiences and lessons learned, which function as directions for future forms of ethics support. Methods A cross-sectional survey combining quantitative and qualitative elements was sent to all healthcare professionals who worked at the Intensive Care Unit of the Amsterdam UMC - Location AMC during the first wave of the COVID-19 pandemic. The survey consisted of 36 items about moral distress (concerning quality of care and emotional stress), team cooperation, ethical climate and (ways of dealing with) end-of-life decisions, and two open questions about positive experiences and suggestions for work improvement. Results All 178 respondents (response rate: 25–32%) showed signs of moral distress, and experienced moral dilemmas in end-of-life decisions, whereas they experienced a relatively positive ethical climate. Nurses scored significantly higher than physicians on most items. Positive experiences were mostly related to ‘team cooperation’, ‘team solidarity’ and ‘work ethic’. Lessons learned were mostly related to ‘quality of care’ and ‘professional qualities’. Conclusions Despite the crisis, positive experiences related to ethical climate, team members and overall work ethic were reported by Intensive Care Unit staff and quality and organisation of care lessons were learned. Ethics support services can be tailored to reflect on morally challenging situations, restore moral resilience, create space for self-care and strengthen team spirit. This can improve healthcare professionals’ dealing of inherent moral challenges and moral distress in order to strengthen both individual and organisational moral resilience. Trial registration The trial was registered on The Netherlands Trial Register, number NL9177. (shrink)

Background Moral distress is a complex and challenging issue in the nursing profession that can negatively affect the nurses’ job satisfaction and retention and the quality of patient care. This study focused on describing the resources and constraints, consequences, and interventions of moral distress in nurses. Methods In a literature review, an extensive electronic search was conducted in databases including PubMed, ISI, Scopus as well as Google Scholar search engine using the keywords including “moral distress” and “nurses” to identify resources, (...) constraints, consequences, and interventions about moral distress in nurses, from the earliest records up to 26 December 2020. The required data were extracted from 61 relevant studies by two independent reviewers. Results Resources and constraints in the occurrence of moral distress among nurses can be divided into three general categories including internal factors, clinical factors, and external factors. The consequences of moral distress on nurses and the medical system reduced moral sensitivity, development of psychological and physical health problems, and the intention to leave the profession. The potential effective interventions were the implementation of integrated communication programs, strengthening physician–nurse collaboration, nursing involvement in clinical decision-making and end-of-life issues, social support, using a resiliency bundle, interdisciplinary discussion, and promoting nurses’ ethical and communication skills. Conclusion There are a wide range of resources and constraints impacting moral distress in nurses that could lead to negative consequences. Further studies are necessary to identify, evaluate, and implement a range of potential effective interventions for the management of moral distress in nurses. (shrink)

Being a healthcare professional in both paediatric and adult hospitals will mean being exposed to human tragedies and stressful events involving conflict, misunderstanding, and moral distress. There are a number of different structured approaches to reflection and discussion designed to support healthcare professionals process and make sense of their feelings and experiences and to mitigate against direct and vicarious trauma. In this paper, we draw from our experience in a large children’s hospital and more broadly from the literature to identify (...) and analyse four established approaches to facilitated reflective discussions. Each of the four approaches seeks to acknowledge the stressful nature of health professional work and to support clinicians from all healthcare professions to develop sustainable skills so they continue to grow and thrive as health professionals. Each approach also has the potential to open up feelings of uncertainty, frustration, sorrow, anguish, and moral distress for participants. We argue, therefore, that in order to avoid unintentionally causing harm, a facilitator should have specific skills required to safely lead the discussion and be able to explain the nature, scope, safe application, and limits of each approach. With reference to a hypothetical but realistic clinical case scenario, we discuss the application and key features of each approach, including the goals, underpinning theory, and methods of facilitation. (shrink)

BackgroundDespite its ubiquity in academic research, the phrase ‘ethical challenge(s)’ appears to lack an agreed definition. A lack of a definition risks introducing confusion or avoidable bias. Conceptual clarity is a key component of research, both theoretical and empirical. Using a rapid review methodology, we sought to review definitions of ‘ethical challenge(s)’ and closely related terms as used in current healthcare research literature.MethodsRapid review to identify peer-reviewed reports examining ‘ethical challenge(s)’ in any context, extracting data on definitions of ‘ethical challenge(s)’ (...) in use, and synonymous use of closely related terms in the general manuscript text. Data were analysed using content analysis. Four databases (MEDLINE, Philosopher’s Index, EMBASE, CINAHL) were searched from April 2016 to April 2021.Results393 records were screened, with 72 studies eligible and included: 53 empirical studies, 17 structured reviews and 2 review protocols. 12/72 (17%) contained an explicit definition of ‘ethical challenge(s), two of which were shared, resulting in 11 unique definitions. Within these 11 definitions, four approaches were identified: definition through concepts; reference to moral conflict, moral uncertainty or difficult choices; definition by participants; and challenges linked to emotional or moral distress. Each definition contained one or more of these approaches, but none contained all four. 68/72 (94%) included studies used terms closely related to synonymously refer to ‘ethical challenge(s)’ within their manuscript text, with 32 different terms identified and between one and eight different terms mentioned per study.ConclusionsOnly 12/72 studies contained an explicit definition of ‘ethical challenge(s)’, with significant variety in scope and complexity. This variation risks confusion and biasing data analysis and results, reducing confidence in research findings. Further work on establishing acceptable definitional content is needed to inform future bioethics research. (shrink)

BackgroundVerbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues identified.MethodsThis research was (...) based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers).ResultsThe use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers.ConclusionsThe collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy. (shrink)

Ethik-Komitees gehören zum festen Bestandteil des Ethikmanagements und der Organisationsethik in klinischen Einrichtungen des Gesundheitswesens. Entsprechende Ethikstrukturen und die damit verbundenen Angebote stoßen hinsichtlich ihrer Wirksamkeit allerdings an ihre Grenzen. Ihre Arbeitsweisen sind häufig reaktiv und eine Verankerung in den entsprechenden Organisationsebenen fehlt. Ausgehend von diesen Limitationen der klinischen Ethikberatung hat sich die multiprofessionelle „Arbeitsgruppe Ethik“ am Universitätsklinikum Tübingen um die Konzeption und Implementierung eines neuen Ansatzes zur nachhaltigen Integration von ethischen Reflexions- und Entscheidungsprozessen auf den Stationen des UKT bemüht. (...) Mit dem Tübinger Modell der Ethikbeauftragten der Station verfolgt sie ein Pilotprojekt, das speziell geschulte Pflegekräfte aus allen Stationen des UKT als AnsprechpartnerInnen für ethische Fragen einsetzt. Damit stellen die Ethikbeauftragten eine Erweiterung zu etablierten Strukturen der Ethikberatung dar und ergänzen vorhandene Top-Down-Strategien. Der vorliegende Beitrag stellt die Zielsetzungen des Tübinger Modells dar und schildert erste Erfahrungen in der Umsetzung. Neben der Einbettung in organisationale Strukturen der Ethikberatung werden die stationsinternen und stationsübergreifenden Aufgaben der Ethikbeauftragten dargestellt. Zudem wird das Qualifikationsprogramm für Ethikbeauftragte sowie ein Train-the-Trainer-Konzept vorgestellt, welche eine vertiefende Entwicklung von pflege- und medizinethischer Kompetenzen unterstützen und Sicherheit in den stationsbezogenen Reflexions- und Entscheidungsprozessen vermitteln. (shrink)

Aim This study is a systematic review that aims to assess how healthcare professionals manage ethical challenges regarding information within the clinical context.Method and Materials We carried out searches in PubMed, Google Scholar and Embase, using two search strings; searches generated 665 hits. After screening, 47 articles relevant to the study aim were selected for review. Seven articles were identified through snowballing, and 18 others were included following a system update in PubMed, bringing the total number of articles reviewed to (...) 72. We used a Q-sort technique for the analysis of identified articles.Findings This study reveals that healthcare professionals around the world generally employ (to varying degrees) four broad strategies to manage different types of challenges regarding information, which can be categorized as challenges related to confidentiality, communication, professional duty, and decision-making. The strategies employed for managing these challenges include resolution, consultation, stalling, and disclosure/concealment.Conclusion There are a variety of strategies which health professionals can adopt to address challenges regarding information management within the clinical context. This insight complements current efforts aimed at enhancing health professional-patient communication. Very few studies have researched the results of employing these various strategies. Future empirical studies are required to address this. (shrink)

Residential child care in Scotland has seen huge changes over the last thirty years, arguably as a consequence of a number of UK wide inquiries into failings within the system (Corby, Doig, and Rob...

Moral injury emerged in the healthcare discussion quite recently because of the difficulties and challenges healthcare workers and healthcare systems face in the context of the COVID-19 pandemic. Moral injury involves a deep emotional wound and is unique to those who bear witness to intense human suffering and cruelty. This article aims to synthesise the very limited evidence from empirical studies on moral injury and to discuss a better understanding of the concept of moral injury, its importance in the healthcare (...) context and its relation to the well-known concept of moral distress. A scoping literature review design was used to support the discussion. Systematic literature searches conducted in April 2020 in two electronic databases, PubMed/Medline and PsychInfo, produced 2044 hits but only a handful of empirical papers, from which seven well-focused articles were identified. The concept of moral injury was considered under other concepts as well such as stress of conscience, regrets for ethical situation, moral distress and ethical suffering, guilt without fault, and existential suffering with inflicting pain. Nurses had witnessed these difficult ethical situations when faced with unnecessary patient suffering and a feeling of not doing enough. Some cases of moral distress may turn into moral residue and end in moral injury with time, and in certain circumstances and contexts. The association between these concepts needs further investigation and confirmation through empirical studies; in particular, where to draw the line as to when moral distress turns into moral injury, leading to severe consequences. Given the very limited research on moral injury, discussion of moral injury in the context of the duty to care, for example, in this pandemic settings and similar situations warrants some consideration. (shrink)

The paediatric Moral Distress Scale-Revised was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22) Lack of time for conversations with patients/families, 23) Parents’ unrealistic expectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide on treatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations in the Swedish (...) paediatric MDS-R, among healthcare professionals in paediatric oncology. In this national cross-sectional survey, the Swedish paediatric MDS-R, including five added items, were used. Descriptive statistics, non-parametric analysis of differences between professions and a MDS-R score for each item were calculated. Internal consistency was tested using Cronbach’s alpha and inter-item correlation test. HCPs at all six Swedish paediatric oncology centres participated. The Regional Ethical Review Board had no objections. Consent was assumed when the survey was returned. Nursing assistants reported higher intensity and lower frequency on all added items; registered nurses reported a higher frequency on item 22–25; medical doctors reported higher MDS-R score on item 26. On item 22, intensity was moderate for RNs and MDs and high for NAs, and frequency was high among all. Item 22, had the second highest MDS-R score of all 26 for all professional groups. On item 23, the level of disturbance was low but it occurred often. The 26-item version showed good internal consistency for the overall sample and for all professional groups. However, item 22 and 24 could be viewed as redundant to two of the original 21. In accordance with other studies, the intensity was higher than the frequency, however, the frequency of the added items was higher than of the original items. In line with previous research, item 22 and 23 are important elements of moral distress. RNs experience the situations more often while NAs find them more disturbing. The results indicate that the added items are important in capturing moral distress in paediatric oncology. (shrink)

This paper introduces the concept of moral residue to global health, and shows how its presence undermines crucial interventions and research, especially in the global south. Lingering feelings of anxiety, anger, blame or frustration often exist among local populations, where previous interventions or research have left traces of harm and/or exploitation. The existence of such feelings reflects the presence of moral residue, recognizing the moral experiences of epistemic injustices, which in turn undermines critical interventions and research through outright rejection or (...) passive non-compliance among affected populations. While such situations have been variously interpreted and relevant strategies developed to address the issues, little to no consideration is made on the implications of moral residue experiences in global health contexts and how to address them. This paper demonstrates the presence of moral residue in global health and proffers an African ethical approach, a harmony framework, for addressing moral residue issues, as part of a holistic approach towards tackling population health crises without compromising health gains for affected populations in the global south. (shrink)

Purpose: Moral distress occurs when one identifies an ethically appropriate course of action but cannot carry it out. In this conceptualization, medical students may be particularly vulnerable to m...

Background:Nurses exposed to community health nursing commonly encounter situations that can be morally distressing. However, most research on moral distress has focused on acute care settings and very little research has explored moral distress in a community health nursing setting especially among nursing students.Aim:To explore the moral distress experiences encountered by undergraduate baccalaureate nursing students in community health nursing.Research design:A descriptive qualitative design was employed to explore the community health nursing experiences of the nursing students that led them to have (...) moral distress.Participants and research context:The study included 14 senior nursing students who had their course in Community Health Nursing in their sophomore year and stayed in the partner communities in their junior year for 6 and 3 weeks during their senior year.Ethical considerations:Institutional review board approval was sought prior to the conduct of the study. Self-determination was assured and anonymity and confidentiality were guaranteed to all participants.Findings:Nursing students are vulnerable and likely to experience moral distress when faced with ethical dilemmas. They encounter numerous situations which make them question their own values and ideals and those of that around them. Findings of the study surfaced three central themes which included moral distress emanating from the unprofessional behavior of some healthcare workers, the resulting sense of powerlessness, and the differing values and mindsets of the people they serve in the community.Conclusion:This study provides educators a glimpse of the morally distressing situations that often occurs in the community setting. It suggests the importance of raising awareness and understanding of these situations to assist nursing students to prepare themselves to the “real world,” where the ideals they have will be constantly challenged and tested. (shrink)

Moral distress is a well-documented phenomenon in the nursing profession, and increasingly thought to be implicated in a nation-wide nursing shortage in the US. First identified by the philosopher Andrew Jameton in 1984, moral distress has also proven resistant to various attempts to prevent its occurrence or at least mitigate its effects. While this would seem to be bad news for nurses and their patients, it is potentially good news for philosophical counselors, for whom there is both socially important and (...) philosophically interesting work to be done. In an effort to encourage such work, this paper explicates the philosophical (as opposed to more purely psychological or institutional) contours of the problem. A subsequent paper, titled 'A Philosophical Counseling Approach to Moral Distress,' will highlight ways in which such a response would differ from the strategies so far deployed within the nursing profession. (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)

Background:Moral distress, moral sensitivity, and moral courage among healthcare professionals have been explored considerably in recent years. However, there is a paucity of studies exploring these topics among baccalaureate nursing students.Aim/objective:The purpose of this study was to explore the relationship between and among moral distress, moral sensitivity, and moral courage of undergraduate baccalaureate nursing students.Research design:The research employed a descriptive-correlational design to explore the relationships between and among moral distress, moral sensitivity, and moral courage of undergraduate nursing students.Participants and research (...) context:A total of 293 baccalaureate Filipino nursing students who have been exposed to various clinical areas participated in the study.Ethical considerations:Institutional review board approval was sought prior to the conduct of the study. Self-determination was assured and anonymity and confidentiality were guaranteed to all participants.Findings:Results indicate that a majority of the nursing students in the clinical areas encounter morally distressing situations that compromise quality patient care. However, despite the fact that they want to do what is in the best interest of their patients, their perception of being the inexperienced among the healthcare team drives the majority of them to ignore morally distressing situations to avoid conflict and confrontation. Another interesting finding is that 79.20% of the respondents hardly consider quitting the nursing profession even if they frequently encounter morally distressing situations. Analysis also shows associations between moral distress intensity and frequency ( r = 0.13, p < 0.05) and moral distress intensity and moral sensitivity ( r = 0.25, p < 0.05). The dimensions of moral courage are also related to both moral distress and moral sensitivity.Conclusion:Results of the study imply that moral distress is a reality among all healthcare professionals including nursing students and requires more consideration by nurse educators. (shrink)

Background:Moral distress is increasingly recognized as a problem affecting healthcare professionals, especially nurses. If not addressed, it may create job dissatisfaction, withdrawal from the moral dimensions of patient care, or even encourage one to leave the profession. Spiritual well-being is a concept which is considered when dealing with problems and stress relating to a variety of issues.Objective:This research aimed to examine the relationship between spiritual well-being and moral distress among a sample of Iranian nurses and also to study the determinant (...) factors of moral distress and spiritual well-being in nurses.Research design:A cross-sectional, correlational design was employed to collect data from 193 nurses using the Spiritual Well-Being Scale and the Moral Distress Scale-Revised.Ethical considerations:This study was approved by the Regional Committee of Medical Research Ethics. The ethical principles of voluntary participation, anonymity, and confidentiality were considered.Findings:Mean scores of spiritual well-being and moral distress were 94.73 ± 15.89 and 109.56 ± 58.70, respectively. There was no significant correlation between spiritual well-being and moral distress ( r = −.053, p =.462). Marital status and job satisfaction were found to be independent predictors of spiritual well-being. However, gender and educational levels were found to be independent predictors for moral distress. Age, working in rotation shifts, and a tendency to leave the current job also became significant after adjusting other factors for moral distress.Discussion and conclusion:This study could not support the relationship between spiritual well-being and moral distress. However, the results showed that moral distress is related to many elements including individual ideals and differences as well as organizational factors. Informing nurses about moral distress and its consequences, establishing periodic consultations, and making some organizational arrangement may play an important role in the identification and management of moral distress and spiritual well-being. (shrink)

Objective:The purpose of this study was to describe the current situation of moral distress and to explore its influencing factors among Chinese nurses.Methods:This is an exploratory, descriptive design study. A total of 465 clinical nurses from different departments in three Grade-III, Level-A hospitals in Jinan, Shandong Province, completed the questionnaires, including demographics questionnaire, Chinese version of Moral Distress Scale–Revised, and Job Diagnostic Survey.Ethical considerations:The study was approved by the university ethics board and the local health service director.Results:The total score of (...) Moral Distress Scale–Revised was 36.01 ± 24.02 points. The mean frequency and intensity scores of moral distress were 1.13 ± 0.49 and 1.09 ± 0.58, respectively. The level of moral distress among Chinese clinical nurses was low, and the frequency and intensity of moral distress were on low to moderate level. The level of moral distress experienced by clinical nurses is associated with demographics features and job characteristics, including age, education degree, department, task significance, autonomy, and dealing with others.Conclusion:Our conclusion suggests that hospital and organizational administrations should attach much importance to the moral distress experienced by clinical nurses in China. Further studies should focus on interventions about how to reduce the levels of the frequency and intensity of moral distress among clinical nurses. (shrink)

Some health care organizations allow physicians to withhold cardiopulmonary resuscitation from a patient, despite patient or surrogate requests that it be provided, when they believe it will be more harmful than beneficial. Such cases usually involve patients with terminal diagnoses whose medical teams argue that aggressive treatments are medically inappropriate or likely to be harmful. Although there is state-to-state variability and a considerable judicial gray area about the conditions and mechanisms for refusals to perform CPR, medical teams typically follow a (...) set of clearly defined procedures for these decisions. The procedures are based on the principle of nonmaleficence and typically include consultation with hospital ethics committees, reflecting the guidelines of relevant professional associations. Ethical debates about when CPR can and should be limited tend to rely more on discussions of theory, principles, and case studies than systematic empirical study of the situations in which such limitations are applied. Sociologists of bioethics call for empirical study, arguing that what ethicists and health professionals believe they are doing when they draft policies or invoke principles does not always mirror what is happening on the ground. In this article, we begin the task of modeling the empirical analyses sociologists call for, focusing on a cohort at Massachusetts General Hospital. We inductively analyzed ethics committee notes and medical records of nineteen patients whose surrogates did not accept the decision to withhold CPR. (shrink)

On the traditional view, moral distress arises only in cases where an individual believes she knows the morally right thing to do but fails to perform that action due to various constraints. We seek to motivate a broader understanding of moral distress. We begin by presenting six types of distress that fall outside the bounds of the traditional definition and explaining why they should be recognized as forms of moral distress. We then propose and defend a new and more expansive (...) definition of moral distress and examine how it can enable the development of a taxonomy of moral distress. (shrink)

Moral distress is one of the core topics of clinical ethics. Although there is a large and growing empirical literature on the psychological aspects of moral distress, scholars, and empirical investigators of moral distress have recently called for greater conceptual clarity. To meet this recognized need, we provide a philosophical taxonomy of the categories of what we call ethically significant moral distress: the judgment that one is not able, to differing degrees, to act on one’s moral knowledge about what one (...) ought to do. We begin by unpacking the philosophical components of Andrew Jameton’s original formulation from his landmark 1984 work and identify two key respects in which that formulation remains unclear: the origins of moral knowledge and impediments to acting on that moral knowledge. We then selectively review subsequent literature that shows that there is more than one concept of moral distress and that explores the origin of the values implicated in moral distress and impediments to acting on those values. This review sets the stage for identifying the elements of a philosophical taxonomy of ethically significant moral distress. The taxonomy uses these elements to create six categories of ethically significant moral distress: challenges to, threats to, and violations of professional integrity; and challenges to, threats to, and violations of individual integrity. We close with suggestions about how the proposed philosophical taxonomy of ethically significant moral distress sheds light on the concepts of moral residue and crescendo effect of moral distress and how the proposed taxonomy might usefully guide prevention of and future qualitative and quantitative empirical research on ethically significant moral distress. (shrink)

In relation to the phenomenon of moral distress, this article presents two original perspectives. First, the literature to date reflects a focus on moral distress in an occupational context. In this article, however, the impact of moral distress on siblings is explored. Moral distress is considered in a particular context, stem cell donation, but there are clear insights and implications for wider practice, particularly in life-threatening contexts and situations where live donation enhances the potential for survival. Second, the article represents (...) some progress in relation to creating conceptual clarity. It is suggested that in addition to external and internal moral constraints a further classification of constraint emerges, and that this is useful in teasing out the distinction between moral stress and moral distress. The insights drawn from exploring the experiences of these siblings should enhance the ability to pre-empt and ameliorate potential distress and, ultimately, reduce harm. (shrink)

The use of traditional ethical methodologies is inadequate in addressing a constructed maternal–fetal rights conflict in a multicultural obstetrical setting. The use of caring ethics and a relational approach is better suited to address multicultural conceptualizations of autonomy and moral distress. The way power differentials, authoritative knowledge, and informed consent are intertwined in this dilemma will be illuminated by contrasting traditional bioethics and a caring ethics approach. Cultural safety is suggested as a way to develop a relational ontology. Using caring (...) ethics and a relational approach can alleviate moral distress in health-care providers, while promoting collaboration and trust between providers and their patients and ultimately decreasing reproductive disparities. This article examines how a relational approach can be applied to a cross-cultural reproductive dilemma. (shrink)

Healthcare workers experience moral injury (MI), a violation of their moral code due to circumstances beyond their control. MI threatens the healthcare workforce in all settings and leads to medical errors, depression/anxiety, and personal and occupational dysfunction, significantly affecting job satisfaction and retention. This article aims to differentiate concepts and define causes surrounding MI in healthcare. A narrative literature review was performed using SCOPUS, CINAHL, and PubMed for peer-reviewed journal articles published in English between 2017 and 2023. Search terms included (...) “moral injury” and “moral distress,” identifying 249 records. While individual risk factors predispose healthcare workers to MI, root causes stem from healthcare systems. Accumulation of moral stressors and potentially morally injurious events (PMIEs) (from administrative burden, institutional betrayal, lack of autonomy, corporatization of healthcare, and inadequate resources) result in MI. Individuals with MI develop moral resilience or residue, leading to burnout, job abandonment, and post-traumatic stress. Healthcare institutions should focus on administrative and climate interventions to prevent and address MI. Management should ensure autonomy, provide tangible support, reduce administrative burden, advocate for diversity of clinical healthcare roles in positions of interdisciplinary leadership, and communicate effectively. Strategies also exist for individuals to increase moral resilience, reducing the impact of moral stressors and PMIEs. (shrink)

Background:Moral distress is recognized as a problem affecting healthcare professionals globally. Unaddressed moral distress may lead to withdrawal from the moral dimensions of patient care, burnout, or leaving the profession. Despite the importance, studies related to moral distress are scant in Thailand.Objective:This study aims to describe the experience of moral distress and related factors among Thai nurses.Design:A convergent parallel mixed-methods design was used. The quantitative and qualitative data were collected in parallel using the Measure of Moral Distress for Healthcare Professionals (...) and interview guide. The analysis was conducted separately and then integrated.Participants:Participants were Thai nurses from two large tertiary care institutions in a Southern province of Thailand.Ethical considerations:This study was approved by our organization's Institutional Review Board for Health Sciences Research, and by the Institutional Review Boards of the two local institutions in Thailand. Permission from the publisher was received to translate and utilize the Measure of Moral Distress (MMD-HP) under the license number: 4676990097151.Results:A total of 462 participants completed the survey questions. The top 7 causes of moral distress were related to system-level root causes and end-of-life care situations. Hierarchical multiple regression showed that work units, considering leaving position, and number of moral distress episodes in the past year were significant predictors of moral distress. Twenty interviews demonstrated three main themes of distressing causes: (1) powerlessness (at patients/family-, team-, and organizational-levels), (2) end-of-life issues, and (3) poor team function (poor communication and collaboration, incompetent healthcare providers, and inappropriate behavior of colleagues). The integration of data from both components indicated that the qualitative interviews enrich the quantitative findings, especially as related to the top 7 causes of moral distress.Discussion:Although the experience of moral distress among Thai nurses is similar to studies conducted elsewhere, the patient’s and family’s religious perspective that ties into the concept of moral distress needs to be explored.Conclusions:Although the root causes of moral distress are similar among different cultures, the experience of Thai nurses may vary according to culture and context. (shrink)

BackgroundIn this article, the sources and features of moral distress as experienced by acute psychiatric care nurses are explored.Research designA qualitative design with 16 individual in-depth interviews was chosen. Braun and Clarke’s six analytic phases were used.Ethical considerationsApproval was obtained from the Norwegian Social Science Data Services. Participation was confidential and voluntary.FindingsBased on findings, a somewhat wider definition of moral distress is introduced where nurses experiencing being morally constrained, facing moral dilemmas or moral doubt are included. Coercive administration of medicines, (...) coercion that might be avoided and resistance to the use of coercion are all morally stressful situations. Insufficient resources, mentally poorer patients and quicker discharges lead to superficial treatment. Few staff on evening shifts/weekends make nurses worry when follow-up of the most ill patients, often suicidal, in need of seclusion or with heightened risk of violence, must be done by untrained personnel. Provision of good care when exposed to violence is morally challenging. Feelings of inadequacy, being squeezed between ideals and clinical reality, and failing the patients create moral distress. Moral distress causes bad conscience and feelings of guilt, frustration, anger, sadness, inadequacy, mental tiredness, emotional numbness and being fragmented. Others feel emotionally ‘flat’, cold and empty, and develop high blood pressure and problems sleeping. Even so, some nurses find that moral stress hones their ethical awareness.ConclusionMoral distress in acute psychiatric care may be caused by multiple reasons and cause a variety of reactions. Multifaceted ethical dilemmas, incompatible demands and proximity to patients’ suffering make nurses exposed to moral distress. Moral distress may lead to reduced quality care, which again may lead to bad conscience and cause moral distress. It is particularly problematic if moral distress results in nurses distancing and disconnecting themselves from the patients and their inner selves. (shrink)

BackgroundThe phenomenon of ‘moral distress’ has continued to be a popular topic for nursing research. However, much of the scholarship has lacked conceptual clarity, and there is debate about what it means to experience moral distress. Moral distress remains an obscure concept to many clinical nurses, especially those outside of North America, and there is a lack of empirical research regarding its impact on nurses in the United Kingdom and its relevance to clinical practice.Research aimTo explore the concept of moral (...) distress in nursing both empirically and conceptually.MethodologyFeminist interpretive phenomenology was used to explore and analyse the experiences of critical care nurses at two acute care trauma hospitals in the United Kingdom. Empirical data were analysed using Van Manen’s six steps for data analysis.Ethical considerationsThe study was approved locally by the university ethics review committee and nationally by the Health Research Authority in the United Kingdom.FindingsThe empirical findings suggest that psychological distress can occur in response to a variety of moral events. The moral events identified as causing psychological distress in the participants’ narratives were moral tension, moral uncertainty, moral constraint, moral conflict and moral dilemmas.DiscussionWe suggest a new definition of moral distress which captures this broader range of moral events as legitimate causes of distress. We also suggest that moral distress can be sub-categroised according to the source of distress, for example, ‘moral-uncertainty distress’. We argue that this could aid in the development of interventions which attempt to address and mitigate moral distress.ConclusionThe empirical findings support the notion that narrow conceptions of moral distress fail to capture the real-life experiences of this group of critical care nurses. If these experiences resonate with other nurses and healthcare professionals, then it is likely that the definition needs to be broadened to recognise these experiences as ‘moral distress’. (shrink)

Moral distress has been well reviewed in the literature with established deleterious side effects for all healthcare professionals, including nurses, physicians, and others. Yet, little is known about the quality and effectiveness of interventions directed to address moral distress. The aim of this integrative review is to analyze published intervention studies to determine their efficacy and applicability across hospital settings. Of the initial 1373 articles discovered in October 2020, 18 were appraised as relevant, with 1 study added by hand search (...) and 2 after a repeated search was completed in January and then in May of 2021, for a total of 22 reviewed articles. This review revealed data mostly from nurses, with some studies making efforts to include other healthcare professions who have experienced moral distress. Education-based interventions showed the most success, though many reported limited power and few revealed statistically lowered moral distress post intervention. This may point to the difficulty in adequately addressing moral distress in real time without adequate support systems. Ultimately, these studies suggest potential frameworks which, when bolstered by organization-wide support, may aid in moral distress interventions making a measurable impact. (shrink)

Background and Objectives Primary care providers (PCPs) report decreased job satisfaction and high levels of burnout, yet little is known about their experience of moral distress. The aim of this study was to gain insight into the experiences of PCPs regarding moral distress including causative factors and proposed mitigation strategies. Methods This qualitative pilot study used semi-structured interviews to identify causes of moral distress in PCPs in an academic family medicine department. Interviews were analyzed using conventional content analysis. Results Of (...) 35 eligible participants, 12 completed the study (34% participation rate). Most were white, female, and had practiced for less than 10 years. Four PCPs had considered leaving their position due to moral distress. Participants identified five causes of moral distress: policies and procedures that conflict with patient needs, the unpredictable nature of primary care, need to “bend the rules,” lack of accountability, and lack of support staff. Six internal conflicts made resolving morally distressing situations difficult: perceived powerlessness, sense of responsibility, socialization to follow orders, emotional toll of the job, competing obligations, and fear of mistakes. Conclusions These findings matched themes in the current literature and identified an unbending infrastructure. This, coupled with the chaotic nature of primary care, resulted in frequent moral distress. Participants offered solutions to reduce and mitigate moral distress (also similar with current literature) and suggested moral distress and burnout are closely linked. (shrink)

In an age of professionalization and specialization, the practice of clinical ethics is facing an identity crisis. Are clinical ethicists moral experts, ethics experts, or merely quasi-lawyers giving legal advice? Are they extensions of the hospital, always working to advance the hospital’s interests? Or is there another option? Since 1998, when the American Society for Bioethics and Humanities first issued its Core Competencies for Healthcare Ethics Consultation, there has been debate about the role of standardization and proceduralism in clinical ethics (...) consultation. Now, as ASBH continues to move forward with its credentialing program, proceduralism in clinical ethics must be critically examined. In this paper, I argue that the proceduralist approach to clinical ethics consultation, as espoused by the ASBH’s call for credentialing, creates a demeaning experience for all parties involved and precludes goods internal to the practice of clinical ethics consultation from being actualized. As a practice embedded in medicine and in institutions such as the hospital, clinical ethics consultation must define and examine its own goods in order to bring about more than a sterile, law-like solution to difficult moral quandaries, as these sterile solutions leave patients, families, and providers unsatisfied, abandoned, and disappointed. Thus, in an effort to push back against this proceduralism in clinical ethics consultation, I will offer a preliminary exploration of what these goods might be. (shrink)

Aims:The aim of this narrative synthesis was to explore the necessary and sufficient conditions required to define moral distress.Background:Moral distress is said to occur when one has made a moral judgement but is unable to act upon it. However, problems with this narrow conception have led to multiple redefinitions in the empirical and conceptual literature. As a consequence, much of the research exploring moral distress has lacked conceptual clarity, complicating attempts to study the phenomenon.Design:Systematic literature review and narrative synthesis (November (...) 2015–March 2016).Data sources:Ovid MEDLINE®In-Process & Other Non-Indexed Citations 1946–Present, PsycINFO®1967–Present, CINAHL®Plus 1937–Present, EMBASE 1974–24 February 2016, British Nursing Index 1994–Present, Social Care Online, Social Policy and Practice Database (1890–Present), ERIC (EBSCO) 1966–Present and Education Abstracts.Review methods:Literature relating to moral distress was systematically retrieved and subjected to relevance assessment. Narrative synthesis was the overarching framework that guided quality assessment, data analysis and synthesis.Results:In all, 152 papers underwent initial data extraction and 34 were chosen for inclusion in the narrative synthesis based on both quality and relevance. Analysis revealed different proposed conditions for the occurrence of moral distress: moral judgement, psychological and physical effects, moral dilemmas, moral uncertainty, external and internal constraints and threats to moral integrity.Conclusion:We suggest the combination of (1) the experience of a moral event, (2) the experience of ‘psychological distress’ and (3) a direct causal relation between (1) and (2) together are necessary and sufficient conditions for moral distress. (shrink)

Background: Laws governing abortion provision are proliferating throughout the United States, yet little is known about how these laws affect providers. We investigated the experiences of abortion...

Autumn Fiester's “Neglected Ends: Clinical Ethics Consultation and the Prospects for Closure” (2015) demonstrates how a focus on recommendations in clinical ethics consultations (CECs) can fail to...

Clinical ethics consultations are sometimes deemed complete at the moment when the consultants make a recommendation. In CECs that involve actual ethical conflict, this view of a consult's endpoint runs the risk of overemphasizing the conflict's resolution at the expense of the consult's process, which can have deleterious effects on the various parties in the conflict. This overly narrow focus on reaching a decision or recommendation in consults that involve profound moral disagreement can result in two types of adverse, lingering (...) sequelae: moral distress or negative moral emotions. The problem, succinctly named, is that such consults have insufficient “closure” for patients, families, and providers. To promote closure, and avoid the ills of moral distress and the moral emotions, I argue that CECs need to prioritize assisted conversation between the different stakeholders in these conflicts, what is often referred to as “bioethics mediation.”. (shrink)

Clinical ethics consultations are sometimes deemed complete at the moment when the consultants make a recommendation. In CECs that involve actual ethical conflict, this view of a consult's endpoint runs the risk of overemphasizing the conflict's resolution at the expense of the consult's process, which can have deleterious effects on the various parties in the conflict. This overly narrow focus on reaching a decision or recommendation in consults that involve profound moral disagreement can result in two types of adverse, lingering (...) sequelae: moral distress or negative moral emotions. The problem, succinctly named, is that such consults have insufficient “closure” for patients, families, and providers. To promote closure, and avoid the ills of moral distress and the moral emotions, I argue that CECs need to prioritize assisted conversation between the different stakeholders in these conflicts, what is often referred to as “bioethics mediation.”. (shrink)

The American Journal of Bioethics, Volume 11, Issue 11, Page 20-21, November 2011.

Objective: To identify the frequency and nature of care conflict dilemmas that United States long-term care providers encounter, response strategies, and use of ethics resources to assist with dispute resolution. Design: An online cross-sectional survey was distributed to the Society for Post-Acute and Long-Term Care Medicine (AMDA). Results: Two-thirds of participants, primarily medical directors, have rejected surrogate instructions and 71% have managed family conflict. Conflict over treatment decisions and issues interpreting advance directives were frequently reported. Half of facilities lack a (...) formal dispute mediation policy. Only five respondents have called an ethics consult for assistance. Conclusion: Ethically tense care conflicts commonly arise in long-term and post-acute care facilities. Few facility procedures incorporate ethics resources into actual practice. Recommendations are made to create actionable policy, increase access to ethics services, and support staff skill development in order to improve the end-of-life care experiences for patients, families, and care facility staff. (shrink)

Moral distress names a widely discussed and concerning clinician experience. Yet the precise nature of the distress and the appropriate practical response to it remain unclear. Clinicians speak of their moral distress in terms of guilt, regret, anger, or other distressing emotions, and they often invoke them interchangeably. But these emotions are distinct, and they are not all equally fitting in the same circumstances. This indicates a problematic ambiguity in the moral distress concept that obscures its distinctiveness, its relevant circumstances, (...) and how individual clinicians and the medical community should practically respond to it. We argue that, in a range of situations that are said to be morally distressing, the characteristic emotion can be well‐understood in terms of what Bernard Williams calls “agent‐regret.” We show what can thereby be gained in terms of a less ambiguous concept and a more adequate ethical response to this distinctive and complex clinician experience. (shrink)

Background:Moral distress has various adverse effects on nurses working in critical care. Differences in personal values, and between values and self-perception of behaviour are factors that may cause moral distress.Research aims:The aims of this study were (1) to identify ethical values and self-perception of behaviour of critical care nurses in Japan and (2) to determine the items with a large difference between value and behaviour and the items with a large difference in value from others.Research design:A nationwide, cross-sectional study was (...) conducted.Participants and research context:We developed a self-administered questionnaire with 28 items, which was completed by 1014 critical care nurses in Japan. The difference between value and self-perception of behaviour was calculated from the score of each value item minus the score of each self-perception of behaviour item. The size of the difference in value from the others was judged by the standard deviation of each item.Ethical considerations:The study was approved by the Ethics Committee of the Tokyo Medical and Dental University (approval nos. M2018-214, M2019-045).Results:The items with a large difference between value and behaviour sources were related to the working environment and decision-making support. The items with a large difference in value from others were related to hospital management and disclosure of information to patients.Discussion:Improving the working environment for nurses is important for reducing moral distress. Nurses are faced with a variety of choices, including advocating for patients and protecting the fair distribution of medical resources, and each nurse’s priorities might diverge from those of other team members, which can lead to conflict within the team.Conclusion:This study revealed items with particularly high risks of moral distress for nurses. The results provide foundational information that can guide the development of strategies to mitigate moral distress. (shrink)

BackgroundAlthough, moral distress presents a serious problem among critical care nurses in many countries, limited research has been conducted on it. A validated scale has been developed to evaluate moral distress and has enabled cross-cultural comparison for seeking its root causes.Research aimsThis study aimed to (1) clarify the current status of moral distress among nurses who worked in critical care areas in Japan, (2) compare the moral distress levels among nurses in Japan with previously reported results from the United States (...) (US), and (3) explore the factors associated with moral distress.Research designA nationwide cross-sectional study was conducted.Participants and research contextWe conducted a self-administered questionnaire survey using the Measure of Moral Distress–Healthcare Professionals (MMD-HP) among critical care nurses who were randomly selected from hospitals across Japan. The mean differences between the two countries were compared using a Student's t-test with summary statistics. The factors associated with higher levels of moral distress were examined using a multiple regression analysis.Ethical considerationsThe study was approved by the Ethics Committee of the Tokyo Medical and Dental University (approval nos. M2018-214 and M2019-045).ResultsWe obtained 955 valid responses from 94 facilities. In Japan, the items with the highest moral distress scores were those related to aggressive/inappropriate treatment. The total MMD-HP score was significantly higher in Japanese nurses compared to US nurses (122.8 ± 70.8 vs 112.3 ± 73.2). Some factors, such as leadership experience, were associated with higher moral distress.DiscussionThe top root causes of moral distress were similar to potentially inappropriate treatments in both countries.ConclusionThis study revealed the factors associated with higher moral distress and its characteristics in each country. These results can be used for reducing moral distress in the future. (shrink)

BackgroundHigh levels of moral distress in nursing professionals, of which oncology nurses are particularly prone, can negatively impact patient care, job satisfaction, and retention.Aim“Positive Attitudes Striving to Rejuvenate You: PASTRY” was developed at a tertiary cancer center to reduce the burden of moral distress among oncology nurses.Research DesignA Quality Improvement (QI) initiative was conducted using a pre- and post-intervention design, to launch PASTRY and measure its impact on moral distress of the nursing unit, using Hamric’s Moral Distress Scale–Revised (MDS-R.) This (...) program consisted of monthly 60-minute sessions allowing nurses to address morally distressing events and themes, such as clinicians giving “false hope” to patients or families. The PASTRY program sessions were led by certified clinicians utilizing strategies of discussion and mind-body practices.ParticipantsClinical nurses working on an adult leukemia/lymphoma unit.Ethical considerationsThis was a QI initiative, participation was voluntary, MDS-R responses were collected anonymously, and the institution’s Ethics Committee oversaw PASTRY’s implementation.FindingsWhile improvement in moral distress findings were not statistically significant, the qualitative and quantitative findings demonstrated consistent themes. The PASTRY program received strong support from nurses and institutional leaders, lowered the nursing unit’s moral distress, led to enhanced camaraderie, and improved nurses’ coping skills.DiscussionMeasurement of moral distress is innately challenging due to its complexity. This study reinforces oncology nurses have measurable moral distress. Interventions should be implemented for a safe and healing environment to explore morally distressing clinical experiences. Poor communication among multidisciplinary team members is associated with moral distress among nurses. Programs like PASTRY may empower nurses to build support networks for change within themselves and institutions.ConclusionThis QI initiative shows further research on moral distress reduction should be conducted to verify findings for statistical significance and so that institutional programs, like PASTRY, can be created. (shrink)

Suffering is a ubiquitous yet elusive concept in health care. In a field devoted to the pursuit of objective data, suffering is a phenomenon with deep ties to subjective experience, moral values, and cultural norms. Suffering’s tie to subjective experience makes it challenging to discern and respond to the suffering of others. In particular, the question of whether a child with profound neurocognitive disabilities can suffer has generated a robust discourse, rooted in philosophical conceptualizations of personhood as well as the (...) academic and experiential expertise of practiced health-care professionals. The issue remains unresolved because it is difficult, perhaps impossible, to ever truly know an infant’s lived experience. But what if this is not the best question? What if instead of asking “can this infant suffer?” the discourse is broadened to ask “is there suffering here?” This latter question demands attention to patients’ subjective experiences of suffering, but also to the web of relationships that envelop them. Without losing sight of the importance of patients’ experiences, consideration of their relationships may elucidate the presence of suffering when the patients themselves are unable to provide the same clarity. In this essay, care ethics frames an examination of how suffering manifests in the loving and caring relationships that surround an infant with profound neurocognitive disabilities, changing those relationships and affecting the individuals within them. Exploring suffering through these relationships may offer clarity on the presence and content of suffering for infants with profound cognitive disabilities, in turn offering moral guidance for responding to suffering and supporting flourishing in this context. (shrink)