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In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the, the author reflects on change in practice in end-of-life care and ethics consultation since the publication of the first edition. As society becomes increasingly diverse, it is important that clinical ethicists recognize that principlism and Western concepts of ethics do not serve all of the needs of the diverse populations and communities that seek care. These cases encourage us and others to stop, pause, and be curious. More often than not, we have time to foster dialogue, thoughtfully explore the consequences of potential pathways of our actions and give respect to the weightiness of death.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author encounters a 50-year-old woman who is requesting her arm be amputated to alleviate her complex regional pain syndrome. This is not a usual indication for an amputation, but a surgeon is willing to offer the procedure. The author attempts to bring about clarity even in the face of uncertainty. Moral distress played a substantial role in the consultation.
The chapters in this Part VII of Complex Ethics Consultations: Cases that Haunt Us are a powerful reminder that healthcare ethics consultation does not involve clinical ethics consultation alone. Organizational ethics issues can also weigh heavily on healthcare providers causing deep moral distress. The four chapters in this section reinforce enduring themes, but time and experience allow a reexamination. The first theme is the lesson of truth-telling, error disclosure, and organizational responsibility. The second is the importance of transparency in organizational decision making along with the importance of communication and coordination of care. These themes are explored in the part they played in real cases, looking at the lessons they teach; current dilemmas; the role of diversity, equity, and inclusion; and finally, the meanings for future practices. As the field of ethics consultation progresses, so too will moral distress and the need for the profession to protect its practitioners, as well as the ethicists to emotionally protect themselves. The successful future practice of ethics consultation depends on it.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author discusses how the four cases in Part VI remain relevant as medical science continues to provide clinical innovations and as patients and their families research and request unorthodox treatments. Considerations about the limits of autonomy, moral distress, and the role of medical advocacy continue to be discussed and debated today as they were when these cases were originally written. However, ethics consultation as a practice has evolved to include awareness and inclusion of cultural context and equity as important factors that can inform decision making, and ensuring more comprehensive consideration of these features in all consultation work should be a goal as medical science progresses.
The series of cases discussed in Part III are humbling reminders of how intertwined our patients and their support systems are with healthcare practitioners. TJ, Jimmy, Mrs. Blue, and Mrs. Winthorpe all have unique experiences in different corners of the healthcare system. Each case touches on the familiar experience of a healthcare team identifying what they believe is in the best interest of patient, and there being a factor, often the patient themselves, complicating that coming to fruition. Their experiences, and different experiences of privilege and power, or disempowerment are salient elements of their stories. These “haunting” and morally distressing cases are revisited with an additional lens of diversity, equity, identity, and bias and considerations for how ethicists might more fully integrate these critical perspectives into ethics consultation.
Moral distress affects a significant proportion of clinicians who have received requests and participated in euthanasia or physician-assisted suicide (E/PAS) globally. It has been reported that personal and professional support needs are often unaddressed, with only a minority of those reporting adverse impacts seeking support.
Objectives
This study aimed to review studies from 2017 to 2023 for the perceived risks, harms, and benefits to doctors of administering E/PAS and the ethical implications for the profession of medicine resulting from this practice.
Methods
The search explored original research papers published in peer-reviewed English language literature between June 2017 and December 2023 to extend prior reviews. This included both studies reporting quantitative and qualitative data, with a specific focus on the impact on, or response from, physicians to their participation in E/PAS. The quantitative review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The qualitative review used the Critical Appraisal Skills Programme to assess whether studies were valid, reliable, and trustworthy.
Results
Thirty studies (quantitative n = 5, qualitative n = 22, mixed methods n = 3) were identified and fulfilled acceptable research assessment criteria. The following 5 themes arose from the synthesis of qualitative studies: (1) experience of the request prior to administration; (2) the doctor’s role and agency in the death of a patient; (3) moral distress post-administration; (4) workload and burnout; and (5) professional guidance and support. Both quantitative and qualitative studies showed a significant proportion of clinicians (45.8–80%) have been adversely affected by their involvement in E/PAS, with only a minority of those reporting adverse impacts seeking support.
Significance of results
Participation in E/PAS can reward some and cause moral distress in others. For many clinicians, this can include significant adverse personal and professional consequences, thereby impacting the medical profession as a whole.
Clinical ethics consultants navigate dilemmas across patient care, public health, and healthcare policy. Issues span from the beginning to the end of life, complex discharges, employment of novel technologies, and visitation restrictions. The second edition relays the narratives of fraught, complex consultations through richly detailed cases. Authors explore the ethical reasoning, professional issues, and emotional aspects of these impossibly difficult scenarios. Describing the affective aspects of ethics consultations, authors highlight the lasting effects of these cases on their practices. They candidly reflect on evolving professional practice as well as contemporary concerns and innovations while attending to equity and inclusivity. Featuring many new chapters, cases are grouped together by theme to aid teaching, discussion, and professional growth. The book is intended for clinicians, bioethicists, and ethics committee members with an interest in the choices made in real-life medical dilemmas as well as the emotional cost to those working to improve the situations.
Pediatric residents experience ethical dilemmas and moral distress during training. Few studies have identified meaningful methods in reducing moral distress in pediatric trainees. The authors aimed to determine how residents perceive ethics case discussions, whether such a program affects trainee ethics knowledge and perceived moral distress, and if residents’ perceived moral distress changes before, during, and after a discussion series. Participants included pediatric residents in a single residency program. Five separate 1-hour sessions were presented over a 5-month period. Each session consisted of a case presentation by a resident developed under the guidance of an ethicist. Multidisciplinary services and content experts were present during sessions. Baseline, postsession, and final surveys were distributed to resident attendees. Open-ended responses were recorded. When comparing baseline and final responses, the only significance was increased preparedness to navigate ethical decisions (p = 0.004). A 10.2% decline was observed in perceived moral distress. An increase in ethics knowledge was observed. Residents favored case-based, multidisciplinary discussions. Residents desire more sessions, time for small-group discussions, and legal insight. Satisfaction was high with 90.7% of respondents feeling better prepared to address ethical concerns. Pediatric trainees desire case-based ethics training that incorporates small-group discussions and insight from multidisciplinary topic experts.
Young people are increasingly distressed by the climate and ecological crises (eco-distress). This has been associated with the failure of people in power to act appropriately, which may cause moral distress and moral injury. We examined this hypothesis by interviewing 13 young adults (19–25 years) in the UK about their climate concerns and perceptions of how State actors and authorities are responding to climate change. Using reflexive thematic analysis, four themes were developed: (1) Climate change is a wicked problem, (2) Moral distress is associated with witnessing acts of omission and commission, (3) Moral distress drives eco-distress, and (4) Opportunities for moral repair. Climate concerns extended to broader concerns about ecological degradation (eco-distress), linked to feelings of moral distress arising from repeatedly witnessing powerful people failing to act on climate change. Eco-distress was also exacerbated by (a) witnessing others in society failing to take appropriate responsibility, (b) realising the limitations of individual action, and (c) being embedded within a culture where personal contribution to climate change is inescapable. In contrast, eco-distress was lessened by seeing authorities engage with the issues morally, and further mitigated by collective, ethical, pro-environmental action. This adds empirical evidence to support the hypothesis that eco-distress involves moral distress and injury arising when State authorities and other powerful bodies engage in wrongful acts and omissions on climate change. We argue that this is affecting the wellbeing of young people and supports the argument that such wrongful (in)action infringes human rights. Clinical implications are discussed.
Key learning aims
(1) To understand how and why moral distress and moral injury relate to the distress that young people feel about climate change (eco-distress).
(2) To consider the clinical implications of formulating eco-distress in a way that includes reference to the violation of core moral codes.
(3) To explore what opportunities exist that could reduce moral distress and support young people.
(4) To understand how research into moral distress and moral injury in relation to climate change can offer important insight into the relevance of eco-distress to human rights infringements and justice-oriented care.
(5) To discuss practical solutions that might support moral repair, both in psychotherapy settings and in broader social policy.
Sometimes patients and clinicians don’t agree and there is conflict. Many people prefer to avoid conflict, however working through it allows us to discuss our differences of opinion, explore the options, and come up with an agreement that we all can live with. Good communication skills can help shift the focus from “Who’s right?” to “What’s our shared interest?” This roadmap is different as it is about how you find your path amidst conflict. Start by noticing there is a disagreement. Prepare yourself by pausing, being curious, and assuming positive intent. Invite the other person’s perspective and listen to their story, emotion, and what it means to their sense of self. Identify what is at the root of the conflict and if possible, articulate it as a shared interest. Brainstorm to address the shared interest, and look for options that address everyone’s goals. Remember that conflicts occur because people care deeply, which means that resolving the conflict will take time and effort. Even in instances where it is not possible to agree, skillful communication can allow for graceful disagreement.
Conflict with our colleagues is stressful and evokes strong emotion, yet handled well can improve outcomes and relationships and enhance collaboration. There are issues of hierarchy, power, and respect. Similar to dealing with conflict with patients is the need to establish a safe space, practice deep listening, and earn trust. Being open to exploring the breadth of the problem, both parties perspectives, your role in the conflict, how you feel about events, and what it means to you will help you approach the situation with a more open mind. Keeping a focus on improving the situation and relationship rather than solely on being right will help maintain calm. The roadmap for conflict with colleagues includes noticing when conflict is bubbling up, preparing your approach instead of jumping in reactively, starting softly to avoid provoking defensiveness, inviting the other person’s perspective before you share yours, using neutral language to reframe emotionally charged issues, acknowledging the emotion of the situation (rather than handling your colleague’s emotions directly), and finding a path forward that addresses both parties’ concerns, creating new options where needed.
The aim of this work was to determine the impact of Moral Distress (MD) in emergency physicians, nurses, and emergency medical service staff at the Rand Memorial Hospital (RMH) in the Bahamas, and the impact of Hurricane Dorian and the COVID-19 pandemic on Moral Distress.
Method:
A cross-sectional study utilizing a 3-part survey, which collected sociodemographic information, Hurricane Dorian and COVID-19 experiences, as well as responses to a validated modified Moral Distress Scale (MDS).
Results:
Participants with 2 negatively impactful experiences from COVID-19 had statistically significantly increased MD compared to participants with only 1 negatively impactful experience (40.4 vs. 23.6, P = 0.014). Losing a loved one due to COVID-19 was associated with significantly decreased MD (B = - 0.42, 95% CI -19.70 to -0.88, P = 0.03). Losing a loved one due to Hurricane Dorian had a non-statistically significant trend towards higher MD scores (B = 0.34, 95% CI -1.23 to 28.75, P = 0.07).
Conclusion:
The emergency medical staff at the RMH reported having mild - moderate MD. This is one of the first studies to look at the impact of concurrent disasters on MD in emergency medical providers in the Bahamas.
Edited by
Richard Williams, University of South Wales,Verity Kemp, Independent Health Emergency Planning Consultant,Keith Porter, University of Birmingham,Tim Healing, Worshipful Society of Apothecaries of London,John Drury, University of Sussex
This chapter explores the moral dimensions of work in emergency and pre-hospital medicine, with an emphasis on protecting the workforce and maintaining optimal functioning of teams. It explores the concepts of moral distress and moral injury from the literature and as they apply to emergency and pre-hospital medicine, but also in the light of the COVID-19 pandemic. It includes reference to the experience of one helicopter emergency medical service (HEMS) organisation attempting to make changes to its culture.
Edited by
Richard Williams, University of South Wales,Verity Kemp, Independent Health Emergency Planning Consultant,Keith Porter, University of Birmingham,Tim Healing, Worshipful Society of Apothecaries of London,John Drury, University of Sussex
Since the World Health Organization (WHO) declared a pandemic on 11 March 2020, there has been much research examining the effects of working during COVID-19 on different sectors of the healthcare workforce. This chapter explores the detailed narratives of nurses’ experiences of COVID-19 in the ICON qualitative research. The participants were from a wide range of working environments and were asked about the possible impacts of working during the pandemic on their psychosocial and emotional wellbeing. It concludes that nurses provided the most care 24 hours a day/7 days a week for patients during the COVID-19 pandemic. The study showed that nurses continued to put patients’ needs first, often to the detriment of their own health. It outlines valuable lessons in the form of structural, organizational, and team learning to support psychosocial wellness in emergencies and disease outbreaks such as the COVID-19 pandemic.
Rigorous attention has been paid to moral distress among healthcare professionals, largely in high-income settings. More obscure is the presence and impact of moral distress in contexts of chronic poverty and structural violence. Intercultural ethics research and dialogue can help reveal how the long-term presence of morally distressing conditions might influence the moral experience and agency of healthcare providers. This article discusses mixed-methods research at one nongovernmental social support agency and clinic in Rio de Janeiro, Brazil. Chronic levels of moral distress and perceptions of moral harm among clinicians in this setting were both violent, following Nancy Scheper-Hughes’ use of that term, and a source of exceptional and innovative care. Rather than glossing over the moral variables of work in such desperate extremes, ethnography in these settings reveals novel skills and strategies for managing moral distress.
This study examined the relationship between moral distress, individual and professional values in oncology nurses.
Methods
Employing structural equation modeling, a descriptive-correlational study was conducted among 116 oncology nurses. Data were collected using the Moral Distress Scale-Revised Adult Nurses, the Nursing Professional Values Scale, and the Values Scale.
Results
The mean moral distress frequency was evaluated as low (1.6 ± 0.7) and the intensity as moderate (1.9 ± 0.8). Both the Nursing Professional Values Scale and Values Scale subdimension mean scores were at levels evaluated as high. There was no specific value that stood out from the others. Structural equation modeling analysis showed that individual values were found to have a direct and negative significant effect on moral distress intensity (β = −0.70, p < 0.01) and frequency (β = −0.58, p <0.01) and professional values had a direct positive and significant effect on moral distress intensity (β = 0.37, p < 0.05) and frequency (β = 0.25, p < 0.05).
Significance of results
It is believed that more national and international studies need to be conducted to examine the relationship between the moral distress concept and values. While individual values were found to have a direct and negative significant effect on moral distress, professional values had a direct positive and significant effect on moral distress.
Moral distress is associated with adverse outcomes contributing to health-care professionals’ worsened mental and physical well-being. Medical social workers have been frontline care providers throughout the COVID-19 pandemic, and those specializing in palliative and hospice care have been particularly affected by the overwhelming numbers of those seriously ill and dying. The main objectives of this study were (1) to assess palliative and hospice social workers’ experiences of moral distress during COVID-19 and (2) to identify and describe participants’ most morally distressing scenarios.
Methods
Using a mixed-methods approach, participants completed an online survey consisting of the Moral Distress Thermometer (MDT) and open-ended text responses.
Results
A total of 120 social work participants responded to the study, and the majority of participants (81.4%) had experienced moral distress with an average MDT score of 6.16. COVID-19 restrictions emerged as the main source of moral distress, and an overlap between the clinical and system levels was observed. Primary sources of moral distress were grounded in strict visitation policies and system-level standards that impacted best practices and personal obligations in navigating both work responsibilities and safety.
Significance
In the first year of the COVID-19 pandemic, palliative and hospice social work participants indicated high levels of moral distress. Qualitative findings from this study promote awareness of the kinds of distressing situations palliative and hospice social workers may experience. This knowledge can have education, practice, and policy implications and supports the need for research to explore this aspect of professional social work.
This study aimed to examine the impact of COVID-19 on hospice Interdisciplinary team (IDT) members’ self-reported stress and identify possible sources of moral distress.
Methods
A cross-sectional survey was conducted using Qualtrics to understand the impact of COVID-19 on quality improvement initiative implementation and hospice IDT members’ general and dementia-specific care provision. Directed qualitative content analysis was used to analyze hospice IDT members’ responses from five open-ended survey questions that were indicative of stress and possible moral distress.
Results
The final sample consisted of 101 unique respondents and 175 comments analyzed. Three categories related to sources of moral distress based on hospice IDT member survey responses were identified: (1) impact of telehealth, personal protective equipment (PPE), and visit restrictions on relationships; (2) lack of COVID-19-specific skills; and (3) organizational climate. Sources of moral distress were categorized in 40% of all responses analyzed.
Significance of results
This study is one of the first to document and confirm evidence of potential stress and moral distress amongst hospice IDT members during COVID-19. It is imperative given the possible negative impact on patient care and clinician well-being, that future research and interventions incorporate mechanisms to support clinicians’ emotional and ethical attunement and support organizations to actively engage in practices that address clinician moral distress resulting from restrictive environments, such as the one necessitated by COVID-19.
Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).
Method
The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.
Results
A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.
Significance of results
The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
State governments and hospital facilities are often unprepared to handle a complex medical crisis, despite a moral and ethical obligation to be prepared for disaster. The 2019 novel coronavirus disease (COVID-19) has drawn attention to the lack of state guidance on how hospitals should provide care in a crisis. When the resources available are insufficient to treat the current patient load, crisis standards of care (CSC) are implemented to provide care to the population in an ethical manner, while maintaining an ability to handle the surge. This Editorial aims to raise awareness concerning a lack of preparedness that calls for immediate correction at the state and local level.
Analysis of state guidelines for implementation of CSC demonstrates a lack of preparedness, as only five states in the US have appropriately completed necessary plans, despite a clear understanding of the danger. States have a legal responsibility to regulate the medical care within their borders. Failure of hospital facilities to properly prepare for disasters is not a new issue; Hurricane Katrina (2005) demonstrated a lack of planning and coordination. Improving disaster health care readiness in the United States requires states to create new policy and legislative directives for the health care facilities within their respective jurisdictions. Hospitals should have clear directives to prepare for disasters as part of a “duty to care” and to ensure that the necessary planning and supplies are available to their employees.