Advance care planning in Belgium and The Netherlands: a nationwide retrospective study via sentinel networks of general practitioners

Abstract

Context: Advance care planning (ACP) is an important part of patient-centered palliative care. There have been few nationwide studies of ACP, especially in Europe.

Objectives: To investigate the prevalence and characteristics of ACP in two European countries and identify the associated factors.

Methods: A mortality follow-back study was undertaken in 2007 via representative nationwide Sentinel Networks of general practitioners (GPs) in Belgium and The Netherlands using similar standardized procedures. All GPs reported on each non-suddenly deceased patient in their practice. Our main outcome measure was whether or not ACP, that is, an agreement for medical treatment and/or medical decisions in the last phase of life in the case of the patient losing competence, was present.

Results: Among 1072 non-sudden deaths, ACP was done with 34% of patients and most often related to the forgoing of potential life-prolonging treatments in general (24%). In 8% of cases, ACP was made in consultation with the patient and in writing. In 23% of cases, care was planned with the patient's family only. Multivariate analysis revealed that ACP was more often made with patients if they were capable of decision making during the last three days of life (odds ratio [OR] 3.86; 95% confidence interval [CI] 2.4-6.1), received treatment aimed at palliation in the last week (OR 2.57; 95% CI 1.6-4.2), had contact with a GP in the last week (OR 2.71; 95% CI 1.7-4.1), died of cancer (OR 1.46; 95% CI 1.1-2.0), or died at home (OR 2.16; 95% CI 1.5-3.0).

Conclusion: In these countries, ACP is done with approximately one-third of the studied terminally ill patient population. Most agreements are made only verbally, and care also is often planned with family only. ACP relates strongly both to patient factors and to health care measures performed at the very end of life.