Purpose: Advance care planning (ACP) is a process of communication among patients, health care providers and relatives regarding future end-of-life decision making, when the patient is not longer capable of making medical decisions. Unfortunately little is known about the actual and preferred involvement in advance care planning as a process, and therefore the aim of this study is to describe the willingness and actual involvement in ACP of the Dutch general population.
Method: A national cross-sectional survey was conducted among a random sample of members of the Dutch general public to assess their actual involvement in and preferences regarding advance care planning. Dutch citizens, aged 18-95 years, were invited to administrate an online-questionnaire about their preferences in decision making and ACP. The response rate was 78%, in total 1960 respondents were included.
Result: Overall, 70% had thought about advance care planning and 41% had discussed this topic with their relatives. 4% had actively discussed ACP with their physician and 7% had drafted an written advance directive. One fifth expressed the need for more information about end-of-life decisions. Furthermore two third was in favour of shared decision making and 31% wanted to make their own medical decisions at the end of life. 71% disagreed with a physician withholding information from a patient, when the physician believes it is for the patient’s best interest. 10% agreed. Factors positively associated with actual involvement in ACP were: age >55, having had experience with a relative who had requested euthanasia, acceptance of euthanasia, a preference for making one’s own medical decisions rather than physicians doing this, and having some knowledge about end-of-life issues.
Conclusion: The majority of the Dutch general population sometimes reflects about end-of-life decision making and a substantial part also discusses their ideas with their relatives. However, discussing ACP with physicians is very rare. In clinical practice it is important to take notice of this interest in ACP in the general population, especially amongst older people.
See more of: The 34th Annual Meeting of the Society for Medical Decision Making