Continuing or forgoing treatment at the end of life? Preferences of the general public and people with an advance directive.

Background: We studied preferences on continuing or forgoing different types of treatments at the end of life in two groups: the general public and people with an advance directive (AD). Furthermore, we studied factors associated with these preferences and whether people's preferences concurred with the content of their AD.

Methods: A representative sample of the Dutch population (n=1402) and a cohort of people who own an AD, consisting of members of Right to Die-NL (NVVE, n=5661) and the Christian-orientated Nederlandse Patiënten Vereniging (NPV, n=1059), answered written questionnaires in 2005 or 2007. We used two hypothetical scenarios, about cancer and dementia, and asked questions about continuing or forgoing four medical treatments.

Results: A majority of the Dutch public (62-87%) and NVVE members (88-99%) wanted to forgo the different treatments in both scenarios, while members of the NPV generally wanted to continue treatment (46-73%). In all three groups, in both scenarios, a substantial group (13-38%) had different preferences for the different treatments. People were more explicit in their preferences in case of dementia than in case of cancer. Being female, over 55 years of age, having had a higher education and having no (significant) religion increased the odds to refuse treatment. ADs that gave the direction to refuse treatment generally concurred with the preference of their owners (85-98% wanting to refuse treatments).

Discussion: The fact that people with and without ADs have different preferences concerning different treatments and diseases stresses the importance of communication surrounding decision making at the end of life.