What is a Good Death? A Choice Experiment on Care Indicators for Patients at End of Life

Context: Health systems should aim to deliver on what matters most to patients. With respect to end of life (EOL) care, knowledge on patient preferences for care is currently lacking.

Objectives: To quantify preference weights for key EOL care indicators.

Methods: We developed a discrete choice experiment survey with 13 key indicators related to patients' experience in the last six weeks of life. We fielded the survey to a web-panel of caregiver proxies for recently deceased care recipients. We obtained 250 responses in each of five countries: India, Singapore, Kenya, the UK and the US. Latent-class analysis was used to evaluate preference weights for each indicator within and across countries.

Results: A 2-class latent-class model was the best fit. Class 1 (average class probability = 64.7%) preference weights were logically ordered and highly significant, while Class 2 estimates were generally disordered, suggesting poor data quality. Class 1 results indicated health care providers' ability to control patients' pain to desired levels was most important (11.5%, 95% CI: 10.3%-12.6%), followed by clean, safe, and comfortable facilities (10.0%, 95% CI: 9.0%-11.0%); and kind and sympathetic health care providers (9.8%, 95% CI: 8.8%-10.9%). Providers' support for nonmedical concerns had the lowest preference weight (4.4%, 95% CI: 3.6%-5.3%). Differences in preference weights across countries were not statistically significant.

Conclusion: Results reveal that not all aspects of EOL care are equally valued. Not accounting for these differences would lead to inappropriate conclusions on how best to improve EOL care.