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

Abstract

IntroductionEthical 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 analysisWe 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 disseminationAs 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 numberCRD42018105365.

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

“… 25 The protocol was prospectively registered with PROSPERO (CRD42018105365) 26 and published open access. 27 There were no deviations from the published protocol, outlined below.…”

“…Whilst data from both these study types might contribute to describing ethical challenges in palliative care, both study types pre-suppose the presence of the challenges they focus on within the experiences of palliative care practitioners, which, as demonstrated by Hermsen and ten Have, may not be the case. 13 , 27 …”

Defining ethical challenge(s) in healthcare research: a rapid review

“…Of the 72 included records, 53 were empirical studies [ 34 – 86 ], 10 non-systematic reviews [ 87 – 96 ], 7 systematic reviews [ 12 – 14 , 97 – 100 ], 1 systematic review protocol [ 101 ], and 1 non-systematic review protocol [ 102 ]. Of the 53 empirical studies, 42 (79%) were qualitative studies [ 34 – 36 , 38 – 44 , 47 , 48 , 50 – 52 , 54 – 58 , 60 , 62 – 67 , 69 , 71 – 77 , 79 – 81 , 83 – 86 ], 6 (12%) used a mixed methods approach [ 45 , 46 , 53 , 59 , 61 , 68 ], and 5 (10%) were quantitative [ 37 , 49 , 70 , 78 , 82 ].…”

“…12/72 (17%) of retrieved studies offered an explicit definition for ‘ethical challenge(s)’ [ 12 – 14 , 48 , 50 , 56 , 57 , 66 , 69 , 81 , 98 , 101 ]. Definitions were more likely to be found in more recent publications, with 4/12 included studies published in 2016–2018 [ 14 , 48 , 56 , 81 ], and 8/12 published in 2019–2021 [ 12 , 13 , 50 , 57 , 66 , 69 , 98 , 101 ].…”

“…12/72 (17%) of retrieved studies offered an explicit definition for ‘ethical challenge(s)’ [ 12 – 14 , 48 , 50 , 56 , 57 , 66 , 69 , 81 , 98 , 101 ]. Definitions were more likely to be found in more recent publications, with 4/12 included studies published in 2016–2018 [ 14 , 48 , 56 , 81 ], and 8/12 published in 2019–2021 [ 12 , 13 , 50 , 57 , 66 , 69 , 98 , 101 ]. The included study locations were evenly distributed, matching the overall pattern of retrieved studies, with studies from high- [ 48 , 50 , 56 , 66 , 81 ], middle- [ 57 , 98 ], and low-income settings [ 48 , 69 ].…”