Appropriate Timing of End-of-Life Care: A Dutch Policy Analysis and Opportunities for Improvement

• Published in: Palliative medicine reports 2024-07, Vol.5 (1), p.269-277
• Main Authors: Jansen, Wim J J, Lerou, Jos G C, Schober, Patrick R, Szadek, Karolina M, Huisman, Bregje A A, Steegers, Monique A H
• Format: Article
• Language: English
• Subjects: Original Article
• ISSN: 2689-2820; 2689-2820
• DOI: 10.1089/pmr.2023.0087

Background: The Exceptional Medical Expenses Act (EMEA) guaranteed public financing for the costs of end-of-life care in The Netherlands until 2015. A life expectancy shorter than three months was a prerequisite for a patient to qualify. Objective: To estimate survival and its potential predictors using the start date of EMEA funded end-of-life care as time origin, and to calculate the ensuing costs. Design: Retrospective observational study using data retrieved from multiple datasets of the national statistical office Statistics Netherlands ( https://www.cbs.nl/en-gb/ ). Setting: Included were all adult patients, who received EMEA funded end-of-life care in hospice units in nursing homes and homes for the elderly in The Netherlands between January 1, 2009, and December 31, 2014. Results: In 40,659 patients (median age 79 years), the distribution of survival was extremely skewed. Median, 95%, and maximum survival times were 15 (95% confidence interval [CI] = 15–15), 219 (210–226), and 2,006 days, respectively. The 90-day and 180-day survival rates were 12.4 (12.1–12.7)% and 6.2 (6.0–6.5)%, respectively. Although age, gender, diagnosis, and start year of end-of-life care were statistically significant independent predictors, clinical significance is limited. End-of-life care was delivered for a total of 1,720,002 days, costing almost 440 million Euros. Fifty-nine percent of the costs was for barely 11% of patients, i.e., those who received end-of-life care for more than 90 days. Conclusion: The use of life expectancy is a weak basis for the appropriate timing of end-of-life care. Further research should evaluate potential tools to improve the timing of end-of-life care, while using available resources efficiently.