When a resident lacks adequate capacity to make decisions for him or herself it naturally follows that someone else must make the decisions or at least assist in the decision-making process (High & Rowles, 1995). The need for decision making for demented residents is acknowledged in ageing research, comprising decisions on treatment and health care, as well as about daily living and residents‟ social environment (Black, Fogarty, Phillips, Finucane, Loreck, Baker & Babins, 2009; High & Rowles, 1995; Maust, Blass, Black & Rabins, 2008). It was typical that most of the staff in these studies tended to have preconceived ideas about a positive association between residents‟ increased functional impairment or their declining state of health and “going downhill” and decisional incapacity. In Hing and Bloom‟s study, 94% of the nursing home residents had at least one functional dependency (Hing & Bloom, 1990); nonetheless, it was argued that “ageing is not a disease” (Forbes & Hirdes, 1993) and that many of the elderly residents of a facility were still able to make decisions about the own daily lives and not just about quality of treatment and health care.
I wrote the following in my field notes to illustrate how staff made decisions on the residents‟ behalf without getting their agreement:
Lee Ming states that he had been taking a shower in his wheelchair since he had been looked after by Sum, his wife, at home since 2003. Recently, the doctor came in and wrote an order for him to have a stretcher shower instead, due to the development of an ulcer on his buttock. Lee Ming said that although he was willing to have skin care and to adjust his shower to clean his private area better, he was not consulted. Showering in the wheelchair allowed Lee Ming some privacy during his shower and allowed him to clean his own face. Now he has to wait for someone to shower him, and strangers have control not only over the length of his shower but also where to wash and when to wash. Sum, his wife, is currently trying to talk to the staff for a return of wheelchair shower privileges. Both Lee Ming and Sum feel that his shower is a personal decision not a medical one. According to Lee Ming, “if the facility is my home, I should be able to make decisions regarding my own preferences. There may be other ways to deal with my torn buttock.” (field note)
Decisions about having a hair cut, clothing and bathing schedules, dining arrangement (who to sit with during meals), choice of room mates and what products are to be sold in the grocery store were all made by made by the staff.
Playing mah-jong is also an example that involves the staff in making a decision. The winner counts the points won, with a monetary value agreed upon by players. However, instead of the players making the decision, the staff decided to use a button for counting the points. (field note)
Weight management is another area that involves a staff decision. Uncle Kwai was obese on admission. The staff decided that he needed to be placed on a diet. He was never consulted about whether he wanted to lose weight. “The staff won’t let me win chocolate at playing chess; they substitute a pack of biscuit or a handkerchief” (Kwai). This is done without his input into the decision. (field note)
During a team meeting that the researcher attended as part of the study, the team discussed a resident‟s situation which resulted in what seemed to be an extreme case of staff making a surrogate decision. A female resident with end stage dementia loved to eat even though she had great difficulty swallowing and was in danger of choking. It would take her an unreasonable amount of time (over an hour and a half) to complete her meal. For the sake of preventing aspiration, it was decided that a nasal gastric tube (a tube inserted through the nose, directly into the stomach) would be used for providing nutrition. Initially, this resident was no longer brought to the dining room for meals since she was receiving gastric feedings. The staff reported, after several meetings with her daughter and the psychiatric specialist, that the woman was depressed as no food was given to her and she continued to pull the tube out. It was then agreed by the staff that she would be permitted to continue eating for pleasure and to allow her to enjoy the food she liked by trying to use “thickened liquids” to help her swallow.
Decisions about aspects of daily life, including the clothes Lee Ming was to wear, had to be made by staff. Instead of having the aides choose the clothes for Lee Ming, Sum suggested to the staff the clothes she thought her husband liked best.
The surrogate decisions observed being made during the course of this study suggest that beyond the predominant treatment and health care decisions, decisions concerning the daily lives of residents, including social aspects, are also frequently
made. Depending on the nature of the decision, sometimes families might be involved in the process of decision making in a sequence of interactions. It was not surprising that staff tended to view the decisions as “task specific” in a fragmentary way and to become involved according to their professional roles and assignments. The staff did not always know about the full range of decisions made that often mirrored what would most likely have been the residents‟ own preference in the staff-driven triad.