INTRODUCTION: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners (SPCPs) about real-world ethical challenges has not previously been synthesised. This evidence is crucial to inform education and training and adequately support staff. The aim of this systematic review is to synthesise the evidence regarding the ethical challenges which SPCPs encounter during clinical practice.
METHODS AND ANALYSIS: We will conduct a systematic review with narrative synthesis of empirical studies that use inductive methods to describe the ethical challenges reported by SPCPs. We will search multiple databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, WHOLIS, Web of Science and CINAHL) without time, language or geographical restrictions. Keywords will be developed from scoping searches, consultation with information specialists and reference to key systematic reviews in palliative care and bioethics. Reference lists of included studies will be hand-searched. 10% of retrieved titles and abstracts will be independently dual screened, as will all full text papers. Quality will be dual assessed using the Mixed-Methods Appraisal Tool (2018). Narrative synthesis following Popay et al (2006) will be used to synthesise findings. The strength of resulting recommendations will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach for qualitative evidence (GRADE-CERQual).
ETHICS AND DISSEMINATION: As this review will include only published data, no specific ethical approval is required. We anticipate that the systematic review will be of interest to palliative care practitioners of all backgrounds and educators in palliative care and medical ethics. Findings will be presented at conferences and published open access in a peer-reviewed journal.
TRIAL REGISTRATION NUMBER: CRD42018105365.
INTRODUCTION: Measuring the quality of care at the end of life and/or the quality of dying and death can be challenging. Some measurement tools seek to assess the quality of care immediately prior to death; others retrospectively assess, following death, the quality of end-of-life care. The comparative evaluation of the properties and application of the various instruments has been limited.
OBJECTIVE: This systematic review identified and critically appraised the psychometric properties and applicability of tools used after death.
METHOD: We conducted a systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines by systematically searching MEDLINE, Embase, CINAHL, and PsycINFO for relevant studies. We then appraised the psychometric properties and the quality of reporting of the psychometric properties of the identified tools using the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) checklist. The protocol of this systematic review has been registered on PROSPERO (CRD42016047296).
RESULTS: The search identified 4751 studies. Of these, 33 met the inclusion criteria, reporting on the psychometric properties of 67 tools. These tools measured quality of care at the end of life (n = 35), quality of dying and death (n = 22), or both quality of care at the end of life and dying and death (n = 10). Most tools were completed by family carers (n = 57), with some also completed by healthcare professionals (HCPs) (n = 2) or just HCPs (n = 8). No single tool was found to be adequate across all the psychometric properties assessed. Two quality of care at the end of life tools—Care of the Dying Evaluation and Satisfaction with Care at the End of Life in Dementia—had strong psychometric properties in most respects. Two tools assessing quality of dying and death—the Quality of Dying and Death and the newly developed Staff Perception of End of Life Experience—had limited to moderate evidence of good psychometric properties. Two tools assessing both quality of care and quality of dying and death—the Quality Of Dying in Long-Term Care for cognitively intact populations and Good Death Inventory (Korean version)—had the best psychometric properties.
CONCLUSION: Four tools demonstrated some promise, but no single tool was consistent across all psychometric properties assessed. All tools identified would benefit from further psychometric testing.