Understanding patients' and doctors' attitudes about shared decision making for advance care planning

Background: Although shared decision making (SDM) is the preferred model of making complex treatment decisions with patients, patients' and doctors' attitudes towards SDM for advance care planning are unknown. Objective: We sought to: (i) gain general insights into the current practice of SDM and attitudes about patient involvement, and (ii) gain specific insights into experience with, and attitudes about, SDM for advance care planning. Design: Qualitative analysis of face-to-face semi-structured interviews. Setting and participants: Patients with chronic lung disease and their doctors at a New York City public hospital. Results: Although patients described participation in decision making, many deferred the final decision to their doctors. Doctors indicated a preference for SDM but expressed barriers including perceived lack of patient understanding and lack of patient empowerment. With regard to end-of-life discussions, patients were generally open to having these discussions with their doctors, although their openness sometimes depended on the circumstance (i.e. end-of-life discussions may be more acceptable to patients for whom the chance of dying is high). Doctors reported engaging in end-of-life treatment decisions with their patients, although expressed the need for conversations to take place earlier, in advance of acute illness, and identified a lack of prognostic estimates as one barrier to engaging in this discussion. Conclusions: Doctors should explore their patients' attitudes regarding end-of-life discussions and preferences for decision-making styles. There is a need for tools such as decision aids which can empower patients to participate in decision making and can support doctors with prognostic estimates pertinent to individual patients.