Perspectives on shared decision making related to medications from patients with multiple long-term conditions transitioning from hospital to home: a qualitative study

INTRODUCTION: Shared decision making is particularly important for patients with multiple long-term conditions due to the nature of long-term treatments and frequent changes in medication regimens. However, the complexity of the medication regimens could exclude these vulnerable patients from shared decision making. There is little knowledge about how patients with multiple long-term conditions experience and perceive shared decision making. AIM: The aim was to explore the perspectives and experiences of patients with multiple long-term conditions regarding shared decision making related to medications before, during and after a hospital stay. METHOD: Semi-structured interviews with 21 patients and three next of kin were conducted. Patients ≥ 18 years, usually living at home, on at least four medications for at least two separate conditions were included. These patients were purposively sampled from two geriatric wards and one internal medicine ward at a university hospital in Norway and interviewed approximately 14 days post hospital discharge. The inclusion and interviews lasted from December 2022 to February 2024. A semi-structured interview guide was used, and the qualitative data were analyzed using directed content analysis guided by the three-talk model developed by Elwyn et al. from 2017. RESULTS: Patients reported not being invited to be part of the shared decision-making process and perceived their limited medical knowledge as a barrier to being invited to participate. They reflected on themselves being primarily focused on single details regarding one medication option they had received. Furthermore, they were not encouraged by the healthcare professionals to discuss and compare different medication options. Both patients and next of kin described an expectation that decisions being made by healthcare professionals would be accepted although the patient did not necessarily understand the treatment plan adequately. Several patients reported that healthcare professional led decisions left little to no room for further discussion and that medication decisions and patient health goals were almost solely in the hands of the healthcare professional. Although most patients trusted the healthcare professional to act in their best interests, this reliance resulted in further disengagement from their own treatment. CONCLUSION: Patients with multiple long-term conditions were in general unfamiliar with and uninvolved in shared decision making related to medications. Additionally, the patients reflected on a lack of invitation to team talk which resulted in limited patient involvement both in option and decision talk.