Matthijs Ps van Wijmen

We compared the performance of two tools to help general practitioners (GPs) identify patients in need of palliative care: the Surprise Question (SQ) and the Supportive and Palliative Care Indicators Tool (SPICT). Prospective cohort study in two general practices in the Netherlands with a size of 3640 patients. At the start of the study the GPs selected patients by heart using the SQ. The SPICT was translated into a digital search in electronic patient records. The GPs then selected patients from the list thus created. Afterwards the GPs were interviewed about their experiences. The following year a record was kept of all the patients deceased in both practices. We analysed the characteristics of the patients selected and the deceased. We calculated the performance characteristics concerning predicting 1-year mortality. The sensitivity of the SQ was 50%, of the SPICT 57%; the specificity 99% and 98%. When analysing the deceased (n = 36), 10 died relatively suddenly and arguably could not be identified. Leaving out these 10, the sensitivity of the SQ became 69%, of the SPICT 81%. The GPs found the performance of the digital search quite time consuming. The SPICT seems to be better in identifying patients in need of palliative care than the SQ. It is also more time consuming than the SQ. However, as the digital search can be performed more easily after it has been done for the first time, initial investments can repay themselves.

Stating preferences about care beforehand using advance care planning and advance directives has become increasingly common in current medicine. There is still lack of clarity what happens over the course of time in relation to these preferences. We wanted to determine whether the preferences about end-of-life care of a person owning an advance directive stay stable after the experience of a life-event; how often advance directives are altered and discussed with family members and physicians over time. A longitudinal cohort study with a population consisting of people owning the most common advance directives in the Netherlands, with a follow-up of 6-years from 2005 until 2011. Respondents were recruited using two associations that provided the advance directives, Right to Die-NL (n = 4463) and the Dutch Patient Organisation (n = 1263). Each 1.5 year a questionnaire was sent. We analyzed the relationship between variables using generalized estimated equations. 96.9–98.1% of the respondents who had experienced a life-event had stable preferences. 89.9–93.7% of Right-to-Die-NL-members who had experienced a life-event didn’t make any alterations in their advance directives. During the 6-year course of our study, a minority of both groups didn’t discuss their advance directive with anyone (8.7–16.4%), while a majority didn’t discuss it with physicians (ranging 58.1–95.1%). Factors related to health, such as deterioration in experienced health, increased the odds to discuss advance directives. Our results largely dispute criticism concerning usability of advance directives due to lack of stability of preferences. Whereas a change in health status and the experience of other life-events were not related to instability in preferences, they did increase the odds of communication about advance directives. Because our results show that the possession of an advance directive does not necessarily result in frequent discussions between patients and caregivers, a more structured approach like advance care planning might be a solution.

ADs are documents in which one can state one's preferences concerning end-of-life care, aimed at making someone's wishes known in situations where he/she is not able to do so in another manner. There is still a lot unclear about ADs. We designed a study aimed at investigating the whole process from the formulating of an AD to its actual use at the end of life.

Research Objective: This study focuses on ADs in the Netherlands and introduces a cross‐cultural perspective by comparing it with other countries.Methods: A questionnaire was sent to a panel comprising 1621 people representative of the Dutch population. The response was 86%.Results: 95% of the respondents didn't have an AD, and 24% of these were not familiar with the idea of drawing up an AD. Most of those familiar with ADs knew about the Advanced Euthanasia Directive (AED, 64%). Both low education and the presence of a religious conviction that plays an important role in one's life increase the chance of not wanting to draw up an AD. Also not having experienced a request for euthanasia from someone else, and the inconceivability of asking for euthanasia yourself, increase the chance of not wanting to draw up an AD.Discussion: This study shows that the subjects of palliative care and end‐of‐life‐decision‐making were very much dominated by the issue of euthanasia in the Netherlands. The AED was the best known AD; and factors that can be linked to euthanasia play an important role in whether or not people choose to draw up an AD. This differentiates the Netherlands from other countries and, when it comes to ADs, the global differences between countries and cultures are still so large that the highest possible goals, at this moment in time, are observing and possibly learning from other cultural settings.