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.
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.
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%).
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.