Moral Challenges of Nurses and Volunteers in Dutch Palliative Care. A Qualitative Study.

Objective: To identify moral challenges experienced by nurses and volunteers in palliative care. Methods: A qualitative hermeneutic research design was used. Interviews with nurses (N = 10) and volunteers (N = 4) working in palliative care, in-home care, and hospice setting. Participants were recruited through maximum variation, a purposive sampling technique. Transcriptions were analyzed using qualitative thematic content analysis and open coding. Results: Two themes were identified, each with three subthemes: theme (A) Moral challenges regarding organizational and professional aspects contained the subthemes (1) dealing with protocols and regulations, (2) different professional perspectives on good care, and (3) limits of professionalism. Theme (B) Moral challenges regarding the patient and their family members contained the subthemes (1) dealing with the patient's wishes, (2) the patient's wish to die, and (3) dealing with family members. Conclusion: Nurses and volunteers working in palliative care are confronted with a wide range of moral challenges. Insight into 'real-world ethical challenges' of healthcare providers is important to provide adequate support to nurses and volunteers working in palliative care.

Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study.

BACKGROUND: Among a growing population of older persons, many affected by multiple diseases and complex needs, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses and frail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this study was to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situations at the end of life in a nursing home. METHODS: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in an urban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of fieldwork, including participant observation and interviews. Observations and digitally recorded interviews were analysed thematically. Five public community stakeholders contributed to the analysis by discussing preliminary results and clinical implications in a focus group. RESULTS: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodily care, were identified: Coping with the impact of workplace demands; Interacting in dialogue and communication; Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort. CONCLUSIONS: The findings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriers included lack of resources, ineffective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility for performing their tasks in response to residents' vulnerability. We therefore suggest that moral deliberation over issues of communication, compassion, decision-making, and behavior, with particular consideration for the care relationship. To further improve the quality of care, organisations must provide resources for the building of relationships, as well as time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation of ethically grounded palliative care.

Ethical Implications of COVID-19: Palliative Care, Public Health, and Long-Term Care Facilities.

Outbreaks of COVID-19 among nursing homes, assisted living facilities, and other long-term care facilities in the United States have had devastating effects on residents. Restrictions such as banning visitors, sequestering residents, and testing health care staff have been implemented to mitigate the spread of the virus. However, consequences include a decline in mental and physical health, decompensation, and a sense of hopelessness among residents. We present and explore a case study at an assisted living facility addressing the ethical issues in balancing the management of the community versus the resident's right to autonomy and self-determination. A team of palliative care experts was brought into assisted living facilities to manage patients, care for well residents, and provide input in advance care planning and symptom management. The principles of self-determination and autonomy, stewardship, and distributive justice were explored. The use of nursing skills in triage and assessment, principles in public health, and the 8 domains of palliative care provided a comprehensive framework for structuring emergency operations. Palliative interventions and the role of palliative care nurses played an integral part in addressing ethical challenges in the containment of the virus and the deleterious effects of social isolation among the elderly.

Ethical issues in nursing home palliative care: a cross-national survey.

OBJECTIVES: With an increased dependency on nursing homes to provide care to the ageing population, it is likely that ethical issues will also increase. This study aimed to identify the type of ethical issues and level of associated distress experienced by nurses providing palliative care in nursing homes in the UK and Canada, and pilot the Ethical issues in Palliative Care for Nursing Homes (EPiCNH) instrument in Canada. METHODS: A cross-sectional survey design was used. One hundred and twenty-three nurses located in 21 nursing homes across the UK and Canada completed the EPiCNH instrument. RESULTS: Frequent ethical issues include upholding resident autonomy, managing family distress, lack of staff communication and lack of time in both countries. Higher levels of distress resulted from poor communication, insufficient training, lack of time and family disagreements. Nurses in Canada experienced a greater frequency of ethical issues (p=0.022); however, there was no statistical difference in reported distress levels (p=0.53). The survey was positively rated for ease of completion, relevance and comprehensiveness. CONCLUSIONS: Nurses' reported comparable experiences of providing palliative care in UK and Canadian nursing homes. These findings have implications on the practice of care in nursing homes, including how care is organised as well as capacity of staff to care for residents at the end of life. Training staff to take account of patient and family values during decision-making may address many ethical issues, in line with global policy recommendations. The EPiCNH instrument has demonstrated international relevance and applicability.

A gap between the philosophy and the practice of palliative healthcare: sociological perspectives on the practice of nurses in specialised palliative homecare.

Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients' drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses' profession in the palliative field and help them implement palliative care philosophy in practice.

Consideraciones éticas para el cuidado de pacientes con dolor por cáncer en la comunidad / Ethical considerations about the care of patients with cancer pain in the community

Introducción: El tratamiento y alivio del dolor es un derecho humano. A pesar del desarrollo de los cuidados paliativos, es común la queja de dolor no controlado en pacientes con cáncer. El profesional de enfermería es uno de los principales eslabones de la atención multidisciplinaria del dolor y su tarea de cuidar se apoya en el respeto de los principios éticos. Objetivo: Exponer algunas consideraciones éticas para el cuidado de pacientes con dolor por cáncer. Métodos: Revisión bibliográfica sistemática para desarrollar un análisis crítico reflexivo del contenido de documentos, tesis de doctorado, artículos originales y de revisión publicados entre 2010 y 2019 en español, portugués e inglés. La búsqueda fue realizada en la base de datos SciELO y Google académico de enero a marzo de 2019, las palabras clave utilizadas fueron ética en enfermería, atención de enfermería, dolor en cáncer, manejo del dolor, bioética y enfermería oncológica. Tras la identificación de los estudios pre-seleccionados se llevó a cabo la lectura de los títulos, resumen y palabras clave, comprobando la pertinencia con el estudio. Conclusiones: El cuidado a pacientes con dolor por cáncer presenta una alta connotación ética. La competencia profesional, los principios éticos y morales, la colaboración en equipo multidisciplinario y la participación de la familia están unidos de manera indisoluble. Se presenta la comunicación como la mejor manera de cuidar al paciente y se constata que el escaso dominio de conocimientos para tratar el dolor viola los principios éticos(AU)

Introduction: Pain treatment and relief is a human right. Despite the development of palliative care, it is common to hear cancer patients complain about non-controlled pain. Nursing professionals are one of the main elements in the multidisciplinary care of pain, and their caring work should be based on respect for ethical principles. Objective: Present some ethical considerations about the care of patients with cancer pain. Methods: A systematic bibliographic review was conducted aimed at a critical reflexive analysis of the content of documents, PhD theses, original papers and review materials published from 2010 to 2019 in Spanish, Portuguese and English. The search was carried out in the databases SciELO and Google Scholar from January to March 2019, using the key words nursing ethics, nursing care, cancer pain, pain management, bioethics, oncology nursing. Upon identification of pre-selected studies, their titles, abstracts and key words were read to determine their relevance to the study. Conclusions: The care of patients with cancer pain has a high ethical connotation. Professional competence, ethical and moral principles, collaboration in multidisciplinary teams and the involvement of the family are all indissolubly linked. It was found that communication plays a crucial role in the care of patients, and that poor knowledge about pain treatment is a breach of ethical principles(AU)

Meeting in a 'free-zone': Clinical ethical support in integrated heart-failure and palliative care.

BACKGROUND: Integrating heart-failure and palliative care combines expertise from two cultures, life-saving cardiology and palliative care, and involves ethically difficult situations that have to be considered from various perspectives. We found no studies describing experiences of clinical ethical support (CES) in integrated cardiology and palliative care teams. OBJECTIVE: Our aim is to describe experiences of CES among professionals after a period of three years working in a multidisciplinary team in integrated heart-failure and palliative homecare. METHOD: The study design was descriptive qualitative, comprising interviews with seven professionals from one integrated heart-failure and palliative care team who received CES over a three-year period. The interview data were subjected to qualitative content analysis. RESULTS: The CES was found to offer possibilities for meeting in an ethical 'free-zone' where the participants could relate to each other beyond their various professional roles and specialties. The trust within the team seemed to increase and the participants were confident enough to express their points of view. Together they developed an integrated understanding, and acquired more knowledge and a comprehensive view of the ethically difficult situation of concern. The CES sessions were considered a means of becoming better prepared to deal with ethical care issues and developing action strategies to apply in practice, from shared standpoints. CONCLUSION: Participating in CES was experienced as meeting in an ethical 'free-zone' and seemed to be a means of facilitating integration of palliative and heart-failure care.

Towards a Guiding Framework for Prison Palliative Care Nursing Ethics.

The number of people aging and dying behind bars is growing, bringing greater attention to the need for prison palliative care. While this trend has rightly led to increased scholarship, a focus on understanding the most effective way to deliver prison palliative care has overshadowed thinking about why the need itself has arisen, as well as deeper ethical thinking about how the nursing profession should respond. This article interweaves 4 strands of analysis-contextual, relational, social, and political-to produce a framework to guide ethical action in prison palliative care nursing, relevant to practice, research, policy, and education.

The Ethics of Prioritizing Access to Palliative Care: A Qualitative Study.

OBJECTIVE: This article sought to explore ethical issues associated with prioritization decisions in palliative care. METHODS: As part of a broader series of studies of triage in palliative care, this qualitative substudy was conducted via semi-structured focus groups and individual interviews. Transcripts were subjected to thematic analysis. SETTING/PARTICIPANTS: Twenty health professionals working across disciplines (primary, specialist; medicine, nursing, and allied health), service types (inpatient, hospital liaison, and community), and locations (metropolitan and rural) in Victoria, Australia. RESULTS: Four themes emerged from the data: (1) Clinicians understood the tension between maintaining service quality with the delivery of a compromised service that sought to respond to demand. (2) They were aware of the influences of relationships and responsibilities upon patient waiting list prioritization, and (3) reported a hierarchy of suffering with certain types of clinical problems viewed as more urgent than others, for example, pain being more urgent than existential distress. (4) Clinicians noted a lack of transparency around waiting lists as they currently exist. CONCLUSIONS: This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. Making explicit the processes and influences upon decision-making provides greater transparency of health-care utilization at the end of life.

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis.

BACKGROUND: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations" (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. OBJECTIVES: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses' current end-of-life care practices. DESIGN: Qualitative secondary analysis. PARTICIPANTS/CONTEXT: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. ETHICAL CONSIDERATION: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. FINDINGS: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. DISCUSSION: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients' preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. CONCLUSION: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses' involvement and practices in end-of-life decision-making.

Nurse participation in legal executions: An ethics round-table discussion.

A paper was published in 2003 discussing the ethics of nurses participating in executions by inserting the intravenous line for lethal injections and providing care until death. This paper was circulated on an international email list of senior nurses and academics to engender discussion. From that discussion, several people agreed to contribute to a paper expressing their own thoughts and feelings about the ethics of nurses participating in executions in countries where capital punishment is legal. While a range of opinions were presented, these opinions fell into two main themes. The first of these included reflections on the philosophical obligations of nurses as caregivers who support those in times of great need, including condemned prisoners at the end of life. The second theme encompassed the notion that no nurse ever should participate in the active taking of life, in line with the codes of ethics of various nursing organisations. This range of opinions suggests the complexity of this issue and the need for further public discussion.

Ethical Challenges of Early Identification of Advanced Chronic Patients in Need of Palliative Care: The Catalan Experience.

Palliative care must be early applied to all types of advanced chronic and life limited prognosis patients, present in all health and social services. Patients' early identification and registry allows introducing palliative care gradually concomitant with other measures. Patients undergo a systematic and integrated care process, meant to improve their life quality, which includes multidimensional assessment of their needs, recognition of their values and preferences for advance care planning purposes, treatments review, family care, and case management. Leaded by the National Department of Health, a program for the early identification of these patients has been implemented in Catalonia (Spain). Although the overall benefits expected, the program has raised some ethical issues. In order to address these challenges, diverse institutions, including bioethics and ethics committees, have elaborated a proposal for the program's advantages. This paper describes the process of evaluation, elaboration of recommendations, and actions done in Catalonia.

End-of-Life Decision Making in Palliative Care and Recommendations of the Council of Europe: Qualitative Secondary Analysis of Interviews and Observation Field Notes.

BACKGROUND: End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. OBJECTIVE: To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. DESIGN: Qualitative secondary analysis. SETTING/SUBJECTS: Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. MEASUREMENTS: An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. RESULTS: The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. CONCLUSIONS: End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.

Palliative sedation and moral distress: A qualitative study of nurses.

BACKGROUND: Clinical nursing practice may involve moral distress, which has been reported to occur frequently when nurses care for dying patients. Palliative sedation is a practice that is used to alleviate unbearable and refractory suffering in the last phase of life and has been linked to distress in nurses. AIM: The aim of this study was to explore nurses' reports on the practice of palliative sedation focusing on their experiences with pressure, dilemmas and morally distressing situations. METHODS: In-depth interviews with 36 nurses working in hospital, nursing home or primary care. RESULTS: Several nurses described situations in which they felt that administration of palliative sedation was in the patient's best interest, but where they were constrained from taking action. Nurses also reported on situations where they experienced pressure to be actively involved in the provision of palliative sedation, while they felt this was not in the patient's best interest. The latter situation related to (1) starting palliative sedation when the nurse felt not all options to relieve suffering had been explored yet; (2) family requesting an increase of the sedation level where the nurse felt that this may involve unjustified hastening of death; (3) a decision by the physician to start palliative sedation where the patient had previously expressed an explicit wish for euthanasia. CONCLUSIONS: Nurses experienced moral distress in situations where they were not able to act in what they believed is the patient's best interest. Situations involving moral distress require nurses to be well informed and able to adequately communicate with suffering patients, distressed family and physicians.

Perspectives on Palliative Care in Cancer Clinical Trials: Diverse Meanings from Multidisciplinary Cancer Care Providers.

BACKGROUND: Palliative care (PC) is often misunderstood as exclusively pertaining to end-of-life care, which may be consequential for its delivery. There is little research on how PC is operationalized and delivered to cancer patients enrolled in clinical trials. OBJECTIVE: We sought to understand the diverse perspectives of multidisciplinary oncology care providers caring for such patients in a teaching hospital. METHODS: We conducted qualitative semistructured interviews with 19 key informants, including clinical trial principal investigators, oncology fellows, research nurses, inpatient and outpatient nurses, spiritual care providers, and PC fellows. Questions elicited information about the meaning providers assigned to the term "palliative care," as well as their experiences with the delivery of PC in the clinical trial context. Using grounded theory, a team-based coding method was employed to identify major themes. RESULTS: Four main themes emerged regarding the meaning of PC: (1) the holistic nature of PC, (2) the importance of symptom care, (3) conflict between PC and curative care, and (4) conflation between PC and end-of-life care. Three key themes emerged with regard to the delivery of PC: (1) dynamics among providers, (2) discussing PC with patients and family, and (3) the timing of PC delivery. CONCLUSION: There was great variability in personal meanings of PC, conflation with hospice/end-of-life care, and appropriateness of PC delivery and timing, particularly within cancer clinical trials. A standard and acceptable model for integrating PC concurrently with treatment in clinical trials is needed.