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Recalibrating the 'world map' of palliative care development.

ABSTRACT: Background: Despite growing interest from policy makers, researchers and activists, there is still little science to underpin the global development of palliative care. This study presents the methods deployed in the creation of a 'world map' of palliative care development. Building on two previous iterations, with improved rigour and taking into account reviewers' feedback, the aim of the study is to determine the level of palliative care development in 198 countries in 2017, whilst ensuring comparability with previous versions. We present methods of data collection and analysis. Methods and analysis: Primary data on the level of palliative care development in 2017 was collected from in-country experts through an online questionnaire and, where required, supplemented by published documentary sources and grey literature. Population and per capita opioid consumption data were derived from independent sources. Data analysis was conducted according to a new scoring system and algorithm developed by the research team. Ethics and dissemination: The study was approved by the University of Glasgow College of Social Sciences Research Ethics Committee. Findings of the study will be disseminated in peer-reviewed journals, as a contribution to the second edition of the Global Atlas of Palliative Care at the End-of-Life, and via social media, including the Glasgow End of Life Studies Group blog and the project website. Limitations of the study: There are potential biases associated with self-reporting by key in-country experts. In some countries, the identified key expert failed to complete the questionnaire in whole or part and data limitations were potentially compounded by language restrictions, as questionnaires were available only in three European languages. The study relied in part on data from independent sources, the accuracy of which could not be verified.

SUBMITTER: Baur N

PROVIDER: S-EPMC6556994 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundEthical 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.AimTo synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice.DesignSystematic 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 sourcesSeven 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.ResultsA 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).ConclusionPalliative 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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Recalibrating the 'world map' of palliative care development.

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