Background The importance of measuring the quality of end-of-life care provision is undisputed, but determining how best to achieve this is yet to be confirmed. This study sought to identify and describe national end-of-life care quality indicators and supporting policies used by countries leading in their end-of-life care provision.
Methods A systematic environmental scan that included a web search to identify relevant national policies and indicators; hand searching for additional materials; information from experts listed for the top 10 (n=15) countries ranked in the ‘quality of care’ category of the 2015 Quality of Death Index study; and snowballing from Index experts.
Findings Ten countries (66%) have national policy support for end-of-life care measurement, five have national indicator sets, with two indicator sets suitable for all service providers. No countries mandate indicator use, and there is limited evidence of consumer engagement in development of indicators. Two thirds of the 128 identified indicators are outcomes measures (62%), and 38% are process measures. Most indicators pertain to symptom management (38%), social care (32%) or care delivery (27%).
Interpretations Measurement of end-of-life care quality varies globally and rarely covers all care domains or service providers. There is a need to reduce duplication of indicator development, involve consumers, consider all care providers and ensure measurable and relevant indicators to improve end-of-life care experiences for patients and families.
- end-of-life care
- palliative care
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Contributor All authors contributed to the research design, consensus discussions for inclusion/exclusion of data and finalising data analysis. All authors contributed to manuscript preparation, editing and finalisation, including figure and table design. The systematic search, including email communications with ‘contacts’ and data collection was completed by CV. Mapping of data to the Donabedian model and to US guideline domains was completed independently by CV and TL with meetings held to enable full consensus. Mapping to the most recent systematic review was completed by CV with an audit of 10% of this work completed independently by JP. Descriptive analysis of indicators was completed independently by CV and TL with close review and input from JP.
Funding This research was supported by an Australian Government Research Training Program Scholarship.
Competing interests None declared.
Ethics approval University of Technology Sydney Human Research Ethics Committee HREC ETH16-0939.
Provenance and peer review Not commissioned; externally peer reviewed.
Collaborators Australia: Nicola Dunbar (Director, Strategy and Development Australian Commission on Safety and Quality in Health Care); Sabina Clapham (PCOC Quality and Education Manager (National) Palliative Care Outcomes Collaboration, Australian Health Services Research Institute (AHSRI), University of Wollongong); Lauren Ognenovski (Policy & Community Engagement Officer, Palliative Care Australia); Belgium: Paul Vanden Berghe (Director, Federation Palliative Care of Flanders, Belgium); Johan Menten (President, Research Task Force, Federation Palliative Care of Flanders, Belgium); Kathleen Leemans (Post Doctoral Researcher, End of Life Care Research Group Vrije Universiteit Brussel and Ghent University); Canada: Sharon Baxter (Executive Director, Canadian Hospice Palliative Care Association); England: Bee Wee (FRCP FRCGP MA Ed PhD, National Clinical Director for End of Life Care, NHS England Consultant in Palliative Medicine, Sir Michael Sobell House, Oxford University Hospitals NHS Foundation Trust, Associate Professor and Fellow of Harris Manchester College, Oxford University Visiting Professor, Oxford Brookes University and University of Worcester; France: Anne de la Tour (Head, Department of Palliative Care and Chronic Pain, Centre Hospitalier V Dupouy, France); Lyn Silove (Infirmière Ressource Soins Palliatifs (Palliative Care Nurse), HAD Croix-Saint-Simon, France); Lucas Morin (Aging Research Centre, Karolinska Institute); Netherlands: Bregje Onwuteaka-Philipsen (Professor of end-of-life research, Expertise Center for Palliative Care, VU University Medical Center, Netherlands); Anneke Francke (Program Leader Nursing and Care, Nivel - Dutch Institute for Health Services Research, Netherlands; and Professor in Nursing Care at the End of Life, Expertise Center for Palliative Care, VU University medical Center, Netherlands). New Zealand: Dr.Kate Grundy (Palliative Medicine Physician, Christchurch Hospital Clinical Director, Canterbury Integrated Palliative Care Services Christchurch, New Zealand); Northern Ireland: Karen Dawson (Primary Care Directorate Department of Health); Scotland: Richard Meade (Head of Policy and Public Affairs, ScotlandMarie Curie); Singapore: Dr Patricia Neo (Clinical Director, Assisi Hospice Deputy Head, Senior Consultant, Division of Palliative Medicine, NCCS Vice Chairman, Singapore Hospice Council); Sweden: Bertil Axelsson (Department of Radiation Sciences, Unit of Clinical Research Centre, Umeå University, Sweden); Switzerland: Monika Obrist (MSc Präsidentin Palliative CH); Taiwan: Sharlene SY Cheng (MD, MSc, DrPH, Department of Family Medicine, National Taiwan University Hospital, Taipei, Taiwan on behalf of the Taiwan Academy of Hospice and Palliative Medicine); the USA: Ira Byock (Executive Director and Chief Medical Officer, Institute for Human Caring, Providence Health & Services, US); Wendy Prins (MPH, MPTSenior Advisor | Quality Innovation | National Quality Forum); Diane Meier (director, Centre to Advance Palliative Care, US); Wales: Veronica Snow (Lead Professional South West Wales Cancer Network).
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