Shared decision making and the use of a patient decision aid in advanced serious illness: provider and patient perspectives

Objective Patients with advanced serious illness face many complex decisions. Patient decision aids (PtDAs) can help with complex decision making but are underutilized. This study assessed barriers and facilitators to the use of a PtDA designed for serious illness. Methods Providers and patients were asked about their experiences in making decisions around serious illness and their opinions towards the PtDA. Seven focus groups were digitally recorded, transcribed and analysed using a general qualitative inductive method. Results Domain 1 -clinical context within which the PtDA would be utilized including three themes: (1a) role: PtDA might compete with the physician's role; (1b) logistics: it was unclear when and how such a PtDA should be implemented; and (1c) meaning: what it will mean to the patient if the physician recommends viewing of this PtDA. Domain 2 -broader global context: (2a) death-denying culture; and (2b) physician concerns that the PtDA was biased towards palliative care. Conclusion Physicians' concerns were rooted in deeper concerns about palliative care and a death-denying culture. Patients were more open to using the PtDA than physicians, suggesting 'it's never too early'. Practice Implications PtDAs for serious illness can maximize early opportunities for goals of care conversations and shared decision making.