While the benefits of participating in care or medical decision making are widely reported, research on decision-making participation preferences usually reveals some portion of individuals who do not want to be involved. Data collected through structured, in-person interviews with 100 residents of six long-term care (LTC) facilities in Victoria, British Columbia, were used to examine participation preferences with respect to four types of care decisions (bedtimes, medication choice, room transfer, and advance directives), as well as predictors of these preferences. Residents with higher levels of formal education, a greater number of chronic conditions, and greater confidence about the worth of their input tend to prefer more active involvement in decision making. This research also suggests that predictors of preference for independent control over decision making (active involvement) differ from predictors of preference for joint or shared decision making. Implications for the empowerment of LTC facility residents and the meaning of decision-making involvement in these environments are discussed.

D’ici à 2038, le nombre d’heures de soins non rémunérées aux aînés offert par les membres de la famille devraient tripler. Les membres des familles sont souvent suppliés d’aider dans le processus parce que vivre avec la démence peut inhiber la capacité pour prendre une décision. Cette étude ethnographique a soumis les relations au sein de soins de la démence à domicile à un examen critique par le biais des entrevues face-à-face et les observations des participants des clients, des aidants naturels et des prestataires de soins à domicile. Les résultats ont révélé comment les décisions sont imposées dans le contexte du système de soins à domicile formels, et ont mis en évidence trois thèmes: (1) L’accommodation de la compétence/incompétence, comme définie cliniquement; (2) La prise de décisions inopportunes; et (3) Le renforcement de l’exclusion des déments dans la prise de décision. Ces thèmes illuminent la façon dont les valeurs culturelles (la compétence), les croyances (l’immuabilité du système) et les pratiques (le réglage des décisions) dans le système de soins à domicile sont finalement déterministes dans la prise de décisions pour les déments et leurs aidants. Afin d’optimiser la santé des déments qui se font soignés à domicile, il faut accorder d’attention supplémentaire aux pratiques collaboratives et inclusives des membres des familles.

The right of the individual to participate in her life-prolonging treatment decisions, either as a decision maker or by having her treatment wishes used as a decision-making criterion, is the result of an evolution in legal guidelines over the last two decades. Although necessary, these legal guidelines are however not sufficient to assure the individual's opportunity to participate. For the chronically ill older adult residing in a health care institution, the opportunity to participate in decisions concerning life-prolonging treatments implicitly depends on the effective communication among three key actors (the individual, her physician, and her proxy). The necessity of this communication has important implications for clinical practice and future empirical research.

Many individuals have tube feeding implemented in the end stages of life. It is also common to have surrogates making life support decisions for others. When family members are placed in the role of decision-maker for an incompetent patient, what factors influence life support decisions? A case study and ethnomethodological inquiry provide an in-depth understanding of factors that influenced one daughter in her decision to have tube feeding implemented for her incompetent and severely debilitated mother. The decision was difficult and constituted a time of crisis. Unfortunately, the most influential factors in decision-making were: (a) urgency in the face of impending death, (b) lack of insight into the mother's values and preferences in relation to life support through tube feeding, (c) lack of knowledge over what tube feeding involved, and (d) the belief that tube feeding would not prolong her mother's life and suffering. Nine other, less influential, factors were also found. Improving the sensitivity of health care professionals to the agony of decision-making and to the decision-making process for life support are the major focuses of this paper.