Advance care planningPromoting advance care planning as health behavior change: Development of scales to assess Decisional Balance, Medical and Religious Beliefs, and Processes of Change
Introduction
Conceptions of advance care planning (ACP) are changing. Traditionally, ACP has been considered as the process by which individuals can specify the care they wish to receive if they become incapable of participating in medical decision making [1]. The measure of engagement of ACP has been the completion of advance directives (ADs), including living wills and health care proxy designations. However, there are many reasons why these documents alone cannot accomplish the goal of providing patients with their preferred care during times of decisional incapacity. First, the forms are frequently not available when surrogate medical decision-making is required [2]. Second, physicians have difficulty determining whether the instructions for treatment contained in living wills and directives apply to the specific circumstances of individual patients [3], [4]. Third, even when health care proxies have been named, these proxies frequently do not know the patient's treatment preferences [5], [6]. If surrogate decision makers have preferences that differ from the patients or are unprepared to act on patients’ wishes, surrogates’ preferences may trump those of the patient as expressed in a living will [4], [7]. Finally, a fundamental concern has been raised about the ability of patients to “pre-specify” their wishes regarding their care [4], [8] given that people cannot generally accurately predict their future wishes [9].
Recognizing the limitations of ADs, many experts in end-of-life care nonetheless have concluded that ACP has an important role in preparing patients and families for the difficult circumstances of serious illness and declining health [1], [10], [11], [12]. Although the specific details of the different models of ACP that have been advanced are varied, there appears to be consensus among them regarding the core elements of effective planning [10], [11], [13], [14], [15], [16]. This includes the notions that, while not sufficient for ACP, living wills and health care proxies can be useful. However, these documents must be accompanied by enhanced communication, between both patients and loved ones, and patients and clinicians, regarding patients’ goals of care.
Conceptions of how individuals engage in ACP are also changing. Traditional approaches to increasing participation focused on providing patients and surrogates with education and planning materials and have had only modest effects on increasing ACP participation [17], [18]. It has been proposed that participation in ACP could be enhanced by providing tailored intervention materials based on individuals’ readiness for engagement [17].
The Transtheoretical Model (TTM) of health behavior change provides a theoretical foundation for the consideration of ACP as a process of behavior change [19]. The TTM has been used to explain and facilitate intervention promoting change across a wide variety of behaviors [20], [21], [22], [23], [24]. The central organizing construct of the TTM is stages of change, the five stages that people move through as they prepare for and ultimately modify their behavior. These stages include precontemplation (no intention to change behavior in the near future), contemplation (thinking about changing behavior in the near future), preparation (commitment to changing behavior soon), action (a recent change in behavior), and maintenance (ongoing behavior change). In prior work, we developed stages of change measures for the key components of ACP characterized as: (a) completion of a living will; (b) completion of a health care proxy; (c) communication between patient and loved ones and between patient and clinicians regarding patients’ views about the use of life-sustaining treatment; (d) communication between patient and loved ones and between patient and clinicians regarding patients’ views about quality versus quantity of life [25].
The TTM also includes the constructs of Decisional Balance and Processes of Change (POC). Decisional Balance represents an individual's weighing of the Pros and Cons of changing their behavior. Decisional Balance assesses individuals’ attitudes toward factors that serve as common barriers to and facilitators of behavior change. Therefore, while Stages of Change assesses intentions and behavior, Decisional Balance assesses attitudes. A predictable pattern has been observed of how the Pros and Cons relate to the Stages of Change. In Precontemplation, the Cons substantially outweigh the Pros. Progression through the subsequent stages is accompanied by a decrease in the Cons and increase in the Pros [26]. POC represent overt and covert activities that people use to progress through the stages of behavior change [27]. Experiential and cognitive processes are used in the earlier stages, and include consciousness raising (e.g. increasing one's awareness of ACP) and self reevaluation (e.g. reflecting on what it means to be a person who participates in ACP). Behavioral processes are used in the later stages, and include helping relationships (finding support from others to participate in ACP) and self liberation (committing oneself to participating in ACP). The purpose of the current study was to develop measures of Decisional Balance and POC for ACP and to examine whether the associations between these constructs and stage of change replicate the relationships posited by the TTM.
Section snippets
Measurement development overview
A sequential approach to measurement development was used [28]. Initial item development and refinement was followed by three phases of analysis, including: (1) exploratory analyses; (2) confirmatory analyses; (3) external validation analyses.
Initial item development and refinement
Initial item development and refinement was based on literature review supplemented with focus groups and followed by pilot testing. The literature review was focused on identifying articles that included an analysis of barriers to and/or facilitators of
Initial item development and refinement
Pilot testing revealed several challenges in administering the TTM scales to older persons. First, participants had difficulty understanding the initial response categories for the decisional balance scale. By asking participant how important each item was to their decision to plan for their future medical care, the response format required participants first to decide first whether or not they agreed with the item and then to decide its importance. We found that participants became confused by
Discussion
Scales measuring the Pros and Cons of ACP, ACP Values/Beliefs, and Processes of Change were developed based on literature review, qualitative research and psychometric analyses, demonstrating both high reliability and validity. Consistent with the hypotheses of the TTM, participants’ scores on these scales varied significantly by stage of change, with scores accounting for between about 7% and 18% of the variance for a broad range of ACP behaviors.
Although several studies have previously
Acknowledgments
This work was supported by the National Institute of Aging at the National Institutes of Health (R01 AG19769, K24 AG28443, P30AG21342).
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