Most Canadians with dementia die in long-term care (LTC) facilities. No data are routinely collected in Canada on the quality of end-of-life care provided to this vulnerable population, leading to significant knowledge gaps. The Quebec Observatory on End-of-Life Care for People with Dementia was created to address these gaps. The Observatory is a research infrastructure designed to support the collection of data needed to better understand, and subsequently enhance, care quality for residents dying with dementia. This article reports on the main steps involved in setting up the Observatory, as well as a pilot study that involved 172 residents with dementia who died between 2016 and 2018 in one of 13 participating facilities. It describes the data gathered, methodological changes that were made along the way, feedback from participating facilities, and future developments of the Observatory.

Background: Advance care planning (ACP) is an important element of high-quality care in nursing homes, especially for residents having dementia who are often incompetent in decision-making toward the end of life. The aim of this study was describe the prevalence of documented ACP among nursing home residents with dementia in Flanders, Belgium, and associated clinical characteristics and outcomes.

Methods: All 594 nursing homes in Flanders were asked to participate in a retrospective cross-sectional postmortem survey in 2006. Participating homes identified all residents who had died over the last two months. A structured questionnaire was mailed to the nurses closely involved in the deceased resident's care regarding the diagnosis of dementia and documented care planning, i.e. advance patient directives, authorization of a legal representative, and general practitioners’ treatment orders (GP orders).

Results: In 345 nursing homes (58% response rate), nurses identified 764 deceased residents with dementia of whom 62% had some type of documented care plan, i.e. advance patient directives in 3%, a legal representative in 8%, and GP orders in 59%. Multivariate logistic regression showed that the presence of GP orders was positively associated with receiving specialist palliative care in the nursing home (OR 3.10; CI, 2.07–4.65). Chances of dying in a hospital were lower if there was a GP order (OR 0.38; CI, 0.21–0.70).

Conclusions: Whereas GP orders are relatively common among residents with dementia, advance patient directives and a legal representative are relatively uncommon. Nursing home residents receiving palliative care are more likely to have a GP order. GP orders may affect place of death.