‘I think this medicine actually killed my wife’: patient and family perspectives on shared decision-making to optimize medications and safety

Abstract

Background: This study explored the perspectives and experiences from patients and families around how patient/family preferences and priorities are considered in medication-related discussions and decisions within the healthcare system. Methods: We conducted a qualitative study using focus groups with residents of Southern Ontario and British Columbia ( N = 16). Three focus groups were conducted using a semi-structured focus group guide. The audiotaped focus group discussions were transcribed verbatim. A thematic analysis, using inductive coding, was completed. Results: A total of three main themes [and several sub-themes (and sub-sub-themes)] emerged from the data: patient and family expertise [ lived experience, information expert , and perceived expert roles (patient/family, healthcare provider)], perceived patient-centredness ( relationship qualities of healthcare provider and assumptions about patients ), and system ( time, coordination and communication , and culture ). Stories told by participants helped to clarify the relationships between the themes and sub-themes, leading to, what we understand as shared decision-making around medications and subsequent health outcomes. Conclusions: Our findings showed that shared decision-making resulted from both recognition and integration of the personal expertise of the patient and family in medications, and perceived patient-centredness. This is broadly consistent with the current conceptualization of evidence-based medicine. The stories told highlight the complex, dynamic, and nonlinear nature of shared decision-making for medications, and that patient priorities are not as integrated into shared decision-making about medications as we would hope. This suggests the need for developing a systematic process to elicit, record, and integrate patient preferences and priorities about medications to create space for a more patient-centred conversation.

Discussing proton pump inhibitor deprescribing: the views of Danish GPs and older patients

“…The GPs in our study displayed a range of practices with respect to discussing patient preferences, suggesting that patient preferences may not always be incorporated into PPI deprescribing decisions. This finding is consistent with a Canadian study [17], which similarly found that patient preferences were not always factored into deprescribing decisions, as well as an Australian study which reported that preferences were often not incorporated into older patients' treatment decisions [18]. We also found a range of attitudes from patients towards discussing their preferences and being part of deprescribing discussions.…”

Foreword to the first special collection: Addressing the invisible iatrogenic epidemic: the role of deprescribing in polypharmacy and inappropriate medication use

“…Similarly, it is essential to include the patient in the conversation as an expert: in their own priorities, in the effects medications have on them, and in the adverse and unintended effects of these medicines. 13 Mangin et al . show that these conversations are rare, but that until they become routine, shared decision making will not be realized.…”

Exploring how GPs discuss statin deprescribing with older people: a qualitative study

“…A focus group study in Canada also suggested that desired involvement in decisionmaking may be a continuum. 25 Thus, it is possible that a more in-depth discussion may be reasonable to some, where minimal discussion would be satisfactory to other patients. However, it has also been suggested that shared decision-making can still be implemented even when patients desire limited involvement in the decision itself.…”

“…The need for tools to elicit values and preferences in the context of deprescribing has been suggested following a recent Canadian focus group study. 25 A framework towards statin deprescribing decisions has also recently been proposed. 4 While not focused specifically on how to discuss statin deprescribing, it may serve as a useful starting point surrounding possible topics.…”