Search

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.

The federal and Quebec governments are both considering extending medical aid/assistance in dying (MAID) to non-competent patients who would have requested MAID prior to losing capacity. In 2016-2017, we surveyed 136 Quebec physicians (response rate: 25.5%) on their attitudes towards extending MAID to such patients. Complementing our published findings, we herein identify demographic and practice characteristics that distinguish physicians who reported being open to extending MAID to non-competent patients with dementia, or willing to administer MAID themselves should it be legal, from those who were not. We found that physicians who were older, had stronger religious beliefs, were trained in palliative care, practiced in a teaching hospital, and had not received assisted dying requests in the year preceding the survey held less favourable attitudes towards MAID for non-competent patients with dementia. These findings will inform current deliberations as to whether assistance in dying should be extended to non-competent patients in some circumstances.

The elderly in palliative care are confronted with difficult decisions relating to treatments. The philosophy of palliative care, namely, including the patient and his/her family right away, leads the doctor to consult with the two parties involved when choosing a treatment. As no theoretical model allows us to understand how the decision-making process hinges on the trio (a capable elderly person, a family caregiver, and the doctor) in a context of palliative care, we propose one which was developed from three strategies of document analysis: theoretical synthesis, theoretical analysis, and theoretical derivation. According to our model, the decision-making process depends on individual factors influencing the decision of the participant, expectations and attitudes as to the role, the level of confidence amongst the parties involved, the manner in which they communicate with each other, their mutual understanding of the clinical and ethical issues, and, finally, their ability to cooperate.