New elements for informed decision making: A qualitative study of older adults’ views

Abstract

Objective

To explore older adults’ views of existing informed decision making (IDM) elements and investigate the need for additional elements.

Methods

We recruited persons 65 and older to participate in six focus groups. Participants completed questionnaires about IDM preferences, and discussed videotapes of idealized patient–physician interactions in light of seven IDM elements: (1) discussion of the patient's role in decision making; (2) discussion of the clinical issue; (3) discussion of alternatives; (4) discussion of benefits/risks; (5) discussion of uncertainties; (6) assessment of patient understanding; and (7) exploration of patient preference. We used a modified grounded theory approach to assess agreement with existing IDM elements and identify new elements.

Results

In questionnaires, 97–100% of 59 participants rated each IDM element as “somewhat” or “very” important. Qualitative analysis supported existing elements and suggested two more: opportunity for input from trusted others, and discussion of decisions’ impacts on patients’ daily lives. Elements overlapped with global communication themes.

Conclusion

Focus groups affirmed existing IDM elements and suggested two more with particular relevance for older patients.

Practice implications

Incorporation of additional IDM elements into clinical practice can enhance informed participation of older adults in decision making.

Introduction

Shared decision making (SDM), the fostering of patient involvement in medical decisions, has become an accepted approach [1], [2], [3], and momentum around SDM is increasing. In 2001 the Institute of Medicine endorsed SDM as a component of high-quality care [4]; the principles of the Patient-Centered Medical Home include the idea that “patients actively participate in decision making” [5]; and some U.S. states are considering legislation to mandate SDM approaches [6]. Several SDM models exist [3], [7], [8], [9], [10], [11], [12], [13], [14], [15], grounded in ethical theory or other conceptual models of effective communication or the psychology of decision making. SDM has been associated with positive outcomes in patient satisfaction, health behaviors, and disease management [16], [17], [18], [19], [20], [21]. Yet much remains unknown about how to optimize patient involvement in decisions in clinical practice.

While numerous studies have shown that most patients prefer to hear information about choices and have the opportunity to share in decision making [3], [9], [22], [23], [24], [25], [26], not all patients wish to be fully involved [3], [9], [24], [25]. Older patients are of particular interest because they face more complex decisions and may face greater risks from treatments, and studies have suggested age-based differences in patients’ perceptions and desired level of involvement in decision making [27], [28], [29], [30], [31]. However, to our knowledge no studies systematically explore older patients’ views about specific shared decision making elements.

Here we focus on our previously developed and widely used informed decision making (IDM) model, which is conceptually related to shared decision making and further emphasizes provision of sufficient information for patients to participate effectively in clinical decisions. Based on integration of the bioethics literature and professional consensus, our model has been validated and applied to analysis of decision making in clinical encounters. Our model includes seven elements, incorporating the key concepts of providing information and fostering patient involvement; these elements have been used to assess the quality of shared decision making in clinical practice [7], [8], [32].

The purposes of this focus group study were to explore older patients’ assessment of these IDM criteria and elicit additional themes informing older patients’ perceptions of shared decision making.