Personal-Professional Boundaries and Ethical Issues in Palliative Care

Recent growth in palliative care research has created a heterogeneous field that encompasses both qualitative and quantitative techniques, and descriptive as well as interventional study designs. Despite the valuable knowledge that has been produced by this research, and the promise of future important advances, its progress has been impeded by a persistent uncertainty about the ethics of these studies. For instance, there have been concerns raised about whether patients near the end of life should ever be asked to participate in research, although others have objected to this extreme position. Nevertheless, the combination of ethical and practical issues can create substantial barriers to palliative care research. This chapter discusses five ethical aspects of palliative care research that investigators and clinicians should consider in designing and conducting palliative care research. These include (1) the study’s potential benefits to future patients, (2) the study’s potential benefits to subjects, (3) the study’s risks to subjects, (4) subjects’ decision-making capacity, and (5) the voluntariness of subjects’ choices about research participation.

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The Eighth Domain of Palliative Care

10.1093/med/9780199798551.003.0009 ◽

2018 ◽

Author(s):

E. Alessandra Strada

Keyword(s):

Palliative Care ◽

Partner Violence ◽

Care Setting ◽

Ethical Issues ◽

Complex Case ◽

Advanced Illness ◽

Family Conflicts ◽

Palliative Care Setting ◽

Case Vignettes ◽

Terminal Prognosis

This chapter discusses palliative psychology competencies in the eighth domain of palliative care, which addresses the legal and ethical aspects of palliative care. Firstly, the chapter reviews psychology ethical standards and principles discussing their application and relevance to the palliative care setting. Palliative psychology competencies are presented. Additionally, principles of medical ethics related to decision making are discussed. Complex case scenarios are discussed with the aid of clinical case vignettes. In particular, the discussion focuses on the ethical issues related to disclosure of a terminal prognosis, family conflicts, and intimate partner violence of patients with advanced illness. Psychological approaches and interventions are discussed in the context of the interdisciplinary palliative care tem approach.

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Real-world ethics in palliative care: A systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice

Palliative Medicine ◽

10.1177/0269216320974277 ◽

2020 ◽

pp. 026921632097427

Author(s):

Guy Schofield ◽

Mariana Dittborn ◽

Richard Huxtable ◽

Emer Brangan ◽

Lucy Ellen Selman

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Clinical Practice ◽

Ethical Issues ◽

Clinical Care ◽

Ethical Principles ◽

Original Research ◽

Specialist Palliative Care ◽

Ethical Challenges ◽

Ethical Practice

Background: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. Aim: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice. Design: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative. Data sources: Seven databases (MEDLINE, Philosopher’s Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges. Results: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy). Conclusion: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing.

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Research in Palliative Care Populations: Ethical Issues

Journal of Palliative Care ◽

10.1177/082585979401000303 ◽

1994 ◽

Vol 10 (3) ◽

pp. 10-15 ◽

Cited By ~ 30

Author(s):

Linda J. Kristjanson ◽

Elizabeth J. Hanson ◽

Lynda Balneaves

Keyword(s):

Palliative Care ◽

Ethical Issues

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

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2018-001643 ◽

2018 ◽

Vol 10 (3) ◽

pp. e29-e29 ◽

Cited By ~ 1

Author(s):

Deborah H. L. Muldrew ◽

Sharon Kaasalainen ◽

Dorry McLaughlin ◽

Kevin Brazil

Keyword(s):

Palliative Care ◽

Nursing Homes ◽

Ethical Issues ◽

Survey Design ◽

Family Values ◽

Ageing Population ◽

Policy Recommendations ◽

Cross Sectional Survey ◽

Cross Sectional ◽

The Uk

ObjectivesWith 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.MethodsA 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.ResultsFrequent 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.ConclusionsNurses’ 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.

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