Design of the Advance Directives Cohort: a study of end-of-life decision-making focusing on Advance Directives

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods/Design</p> <p>The study has mixed methods: it's longitudinal, consisting of a quantitative cohort-study which provides a framework for predominantly qualitative sub-studies. The members of the cohort are persons owning an AD, recruited through two Dutch associations who provide the most common standard ADs in the Netherlands, the NVVE (Right to Die-NL), of which 5561 members participate, and the NPV (Dutch Patient Organisation), of which 1263 members participate. Both groups were compared to a sample of the Dutch general public. NVVE-respondents are more often single, higher educated and non-religious, while amongst NPV-respondents there are more Protestants compared to the Dutch public. They are sent a questionnaire every 1,5 year with a follow-up of at least 7,5 years. The response rate after the second round was 88% respectively 90% for the NVVE and NPV. Participants were asked if we were allowed to approach close-ones after their possible death in the future. In this way we can get insight in the actual use of ADs at the end of life, also by comparing our data to that from the Longitudinal Aging Study Amsterdam, whose respondents generally do not have an AD.</p> <p>Discussion</p> <p>The cohort is representative for people with an AD as is required to study the main research questions. The longitudinal nature of the study as well as the use of qualitative methods makes it has a broad scope, focusing on the whole course of decision-making involving ADs. It is possible to compare the end of life between patients with and without an AD with the use of data from another cohort.</p

Decision-making capacity and communication about care of older people during their last three months of life

Abstract Background Limited decision-making capacity (DMC) of older people affects their abilities to communicate about their preferences regarding end-of-life care. In an advance directive (AD) people can write down preferences for (non)treatment or appoint a proxy as a representative in (non)treatment choices in case of limited DMC. The aim is to study limited DMC during the end of life and compare the background, (satisfaction with) care and communication characteristics of people with and without limited DMC. Furthermore, the aim is to describe patient proxies’ opinions about experiences with the use of (appointed proxy) ADs. Methods Using a questionnaire, data were collected from proxies of participants of a representative sample of the Longitudinal Aging Study Amsterdam (n=168) and a purposive sample of the Advance Directive cohort study (n=184). Differences between groups (with and without limited DMC, and/or with and without AD) were tested with chi-square tests, using a level of significance of p Results At a month before death 27% of people had limited DMC; this increased to 67% of people having limited DMC in the last week of life. The care received was in accordance with the patient’s preferences for the majority of older people, although less often for people who had limited DMC for more than a week. The majority of the proxies were satisfied with the communication between physician and the patient and them, regardless of DMC of the patient. Of people with an AD, a small majority of relatives indicated that the AD had been of additional value. Finally, no differences were found in the role of the relative and the satisfaction with this role between people with and without a proxy AD. Conclusions Although relatives have positive experiences with ADs, our study does not provide strong evidence that (proxy) ADs are very influential in the last phase of life. They can best be seen as a tool for advance care planning.</p