Background: In Quebec, medical aid in dying (MAiD) is legal under certain conditions. Access is currently restricted to patients who are able to consent at the time of the act, which excludes most people with dementia at an advanced stage. However, recent legislative and political developments have opened the door to an extension of the legislation that could give them access to MAiD. Our study aimed to explore the attitudes of people with early-stage dementia toward MAiD should it become accessible to them. Methods: We used a qualitative descriptive design consisting of eight face-to-face semi-structured interviews with persons living with early-stage Alzheimer’s disease, followed by a thematic analysis of the contents of the interviews. Results and Interpretations: Analysis revealed three main themes: 1) favourable to MAiD; 2) avoiding advanced dementia; and 3) disposition to request MAiD. Most participants anticipated dementia to be a painful experience. The main reasons for supporting MAiD were to avoid cognitive loss, dependence on others for their basic needs, and suffering for both themselves and their loved ones. Every participant said that they would ask for MAiD at some point should it become available to incompetent patients and most wished that it would be legal to access it through a request written before losing capacity. Conclusion: The reasons for which persons with Alzheimer’s disease want MAiD are related to the particular trajectory of the disease. Any policy to extend MAiD to incompetent patients should take their perspective into account.

No abstract

Le vieillissement de la population, la complexité et l’irréversibilité de certaines conditions conduisent aux décès de 20 % des patients admis dans les unités de soins intensifs (USI). Toutefois, au Québec, comme ailleurs en Amérique, peu d’entre eux bénéficient de soins palliatifs. Méthode : inspirée d’un modèle conceptuel considérant les soins infirmiers comme une pratique morale, cette étude phénoménologique s’est déroulée en quatre phases : entrevues de groupe (n=6), séances d’observation (n=6) suivie d’entrevues individuelles et activités de validation de groupe (n=5). Cette étude, publiée en deux parties, démontre d’abord qu’à travers plusieurs comportements de caring , les « bons soins » palliatifs à l’USI se manifestent par la considération des six dimensions de la personne, soit : physique, relationnelle, psychologique, morale sociale et spirituelle. Le présent article présente la seconde partie de cette étude et révèle que trois thèmes résument les conditions facilitant les « bons soins » palliatifs selon les infirmières de l’USI soit : le partage d’une vision commune appuyée par une formation adaptée à l’USI, un processus de décision informée et concertée dans un environnement organisationnel et physique propice aux soins palliatifs.

No abstract

BackgroundDespite considerable collective improvement efforts and clinical initiatives to integrate palliative and end-of-life care the intensive care unit (ICU), few patients are currently receiving palliative care in this particular setting as promoted by the World health organisation (WHO).AimOur first study showed that three conditions promote the integration of palliative care in the ICU: sharing a common vision, a concerted decision-making process and a proper environment. In light of these findings, we developed, implemented and evaluated an intervention integrating these previously identified conditions. The purpose of this communication is to present our research process and its main results.Method and discussionAn action research design was chosen for this study because this method is highly collaborative, values consensual decision-making process and provides an organisational structure allowing success and sustainability.ResultsThe first phase of this study led to the development of a two component communication intervention: an interactive educational workshop and an interdisciplinary component, making the entire team and the patient active participant in the decision making. This intervention was implemented in the ICU and evaluated with a constructivist approach through a pilot-case study which offered an operational illustration of palliative care in the ICU through an integrative model.ConclusionsThis study clearly demonstrates that changing the culture of the ICU is a collective endeavour that could be empowered by action research process. Early proactive interdisciplinary rounds and regular patient-family meeting, improves successful goal-directed care, quality end-of-life care and satisfaction.