Palliative care experts’ relative importance of end-of-life care quality indicators: Findings from a discrete choice experiment

Abstract

Background:

End-of-life care delivery is shaped by subject matter experts who influence treatment decisions, policies, and programs and set guidelines that inform end-of-life care practices. However, little is known about what these experts view as most important when delivering high quality end-of-life care.

Aim:

To quantify the relative value that experts place on 13 key indicators of care quality at end-of-life and to assess whether preferences vary across high- and low/middle income countries.

Design:

Cross-sectional survey using a discrete choice experiment that asks respondents to trade-off between three hypothetical care providers with varying ratings across indicators, based on a five-star rating system. Mixed logit regression analysis was used to estimate the relative importance for each indicator, such that the sum across indicators totals 100%.

Participants:

A total of 193 experts from 121 countries.

Results:

Experts placed greatest relative importance on managing pain and discomfort (19.0%), quality of life extending treatments (10.0%), treating patients kindly (9.1%), and ensuring costs are not a barrier to treatment (8.7%). They placed least emphasis on non-medical concerns (3.7%) and spiritual needs (2.2%). No differences were found between respondents from high- and low/middle income countries.

Conclusion:

These results reinforce the importance of pain management as the most important indicator of end-of-life quality. Results further suggest that excessive emphasis on life extension may not be the best use of scarce resources and greater value may be achieved by focusing on other aspects of end-of-life care quality. These results hold for both high- and low/middle income countries.