Dementia is a syndrome which affects the individual’s ability to make decisions and to undertake everyday activities (ADI, 2015; WHO, 2012). A range of neurodegenerative diseases (including Alzheimer’s disease) cause progressive or chronic symptoms which persist until death and these symptoms include loss of; memory and insight, the ability to make judgements, the ability to communicate and the ability to carry out complex tasks. Symptoms also cause changes in behaviour (ADI, 2015; WHO, 2012).
When the person who is living with dementia does not have decisional capacity another person, the proxy decision maker, will need to make the decision. WHO (2012) report that the ethical issues occurring in everyday decision making are often neglected in research and that such issues can occur because of the need to balance an individual’s past values and views with current values and views. When the contemporary interests and desires of an individual who is living with dementia conflict with their past interests and desires proxy decision makers must choose which interests and desires take precedence (Stonestreet, 2014; Nys, 2013).
The empirical research outlines the responsibility of decision making. It is challenging (Givens et al., 2012) and the process is difficult (Hummel, 2015). Decision making is an emotional experience (Hummel, 2015; Ducharme et al., 2012; Manthorpe et al., 2012) and Wolfs et al. (2012) find that emotions may influence decisions. Decision makers experience stress (Lopez et ala, 2013; Givens et al., 2012; Wolfs et al., 2012), guilt (Caldwell et al., 2014) and uncertainty (Givens et al., 2012; Manthorpe et al., 2012). Nurses and other healthcare professionals may therefore be required to support decision makers.
The aim of this study was to explore the potential for Construal Level Theory to be used as a basis for analysing the conceptual thinking of proxy decision makers when they are making a decision where the past and present interests of the person who is living with dementia are in conflict. Construal Level Theory (Liberman and Trope, 2014 for a review puts forward that individuals can surmise about or remember the past and imagine reactions and make predictions about the future by traversing psychological distance. When individuals think about distant events or objects which are discrete from their direct experiences they have to traverse psychological distance. Dimensions of psychological distance may be in time, in space, in social distance or in considering hypothetical situations. When we think of things beyond our direct experience across psychological distance, we think of them more abstractly. Abstract thinking (high level construal) entails consideration of the central features and the desirability of an event or object; the end result is given importance. When making decisions abstraction gives meaning and allows for the clarification of goals. In contrast, when individuals think concretely (low level construal) details and practical concerns are taken into account; feasibility is considered. Construal Level Theory has been applied in the health domain (Choi et al., 2012) but there is no evidence in the literature of its application to proxy decision making.
Methods:
This project focused on individuals’ responses to a progressing scenario about a person who could no longer decide for themselves. The aim of the research was to test the applicability of Construal Level Theory.
A qualitative design was selected because the research aimed to explore influences and associations in decision making (Ritchie and Ormston, 2014). Sequences can be identified and theory can be tested (Bryman, 2016). Invitations to participate and information for participants were placed on a Virtual Learning Environment for students and emailed to staff in a department within a large University. Given the exploratory nature of the work a convenience sample of seven participants was used (Ritchie et al., 2014).
Face to face semi-structured interviews including the presentation of a scenario were used for data collection. Participants gave their informed consent before the interviews commenced and these were audio-recorded and transcribed verbatim. This approach provided structure and encouraged the participant to deliberate and talk aloud. Generating data through a specific interaction provides an opportunity to find out what participants are thinking about (Lewis and McNaughton Nicholls, 2014) and interviews allow for direct exploration and clarification of perspectives (Lewis and McNaughton Nicholls, 2014), therefore they are a useful way to gain understanding (Rowley, 2012). Scenarios provide consistency and a focus for discussion (Arthur et al., 2014). The scenario featured Alan, an individual who is living with dementia. He has expressed a preference to sleep in his wheelchair at night with a blanket over his head, he is a bilateral amputee, but he is no longer competent to make his own decisions and questions regarding putting him into bed at night are asked of participants. The scenario is in three parts, two parts involving progressions from the base scenario, and in each part different information is given relating to the question about putting Alan into bed at night. Progressions were included to explore how participants reacted to new information. Participants were led through each part of the scenario and were asked what they were thinking and feeling about it. “How” and “why” questions were not asked as this can induce abstract thinking which may influence participant responses (Burgoon et al., 2013). A Likert scale was used to measure familiarity and similarity with this type of scenario because this may also influence construal (Burgoon et al., 2013).
All three members of the research team analysed the same two transcripts for themes. Thematic analysis is a flexible way to discover patterns and meaning (Spencer et al., 2014). Analysis was inductive and deductive as themes emerged from knowledge of decision research and from the data itself. The team met to agree on themes and saturation was reached with the seven participants. After this part of the analysis was complete, responses within the themes were analysed for abstractness of language using the Linguistic Category Method. The distinction between low-level and high-level construal can be found in the use of concrete or abstract action verbs and adjectives. Concrete action verbs indicate low-level construal as they describe how an action is performed and its feasibility whereas abstract action verbs and adjectives indicate high-level construal as they describe why an action is performed and its desirability (Liberman and Trope, 2014).
Results:
Participants in this study were found to travel across psychological distance to think abstractly about individual in the scenario. Participants also thought concretely when considering pragmatic concerns. We find that Construal Level Theory can be used to analyse the conceptual thinking of proxy decision makers, providing insight into concerns and ways to address them (e.g. by identifying principles for decision making). This understanding can inform the support that nurses and other healthcare professionals give to decision makers.
Conclusion:
The next stage of the research is to develop the following projects:
- Decisions which have real links to an individual who is living with dementia, where there might be emotional and social elements, will be explored using Construal Level Theory
- A framework with which to reflect on and structure decision making will be developed and evaluated. This could be used by lay people, nurses and other healthcare professionals