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

TL;DR

This study analyzes end-of-life care in the Netherlands, finding that predicting survival is difficult and costs are unevenly distributed.

Contribution

The study evaluates the effectiveness of using life expectancy to time end-of-life care and highlights cost inefficiencies.

Findings

Median survival was 15 days, but 95% of patients lived less than 219 days.

59% of costs were spent on 11% of patients receiving care for over 90 days.

Age, gender, diagnosis, and start year were weak predictors of survival.

Abstract

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.

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.

Retrospective observational study using data retrieved from multiple datasets of the national statistical office Statistics Netherlands (https://www.cbs.nl/en-gb/).

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.

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.

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.

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