BackgroundAlthough 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.ObjectiveWe 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.DesignQualitative analysis of face‐to‐face semi‐structured interviews.Setting and participantsPatients with chronic lung disease and their doctors at a New York City public hospital.ResultsAlthough 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.ConclusionsDoctors 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.

BackgroundAdvance care planning may help patients receive treatments that better align with their goals for care. We developed a Web-based decision aid called InformedTogether to facilitate shared advance care planning between chronic obstructive pulmonary disease (COPD) patients and their doctors.ObjectiveOur objective was to assess the usability of the InformedTogether decision aid, including whether users could interact with the decision aid to engage in tasks required for shared decision making, whether users found the decision aid acceptable, and implications for redesign.MethodsWe conducted an observational study with 15 patients and 8 doctors at two ethnically and socioeconomically diverse outpatient clinics. Data included quantitative and qualitative observations of patients and doctors using the decision aid on tablet or laptop computers and data from semistructured interviews. Patients were shown the decision aid by a researcher acting as the doctor. Pulmonary doctors were observed using the decision aid independently and asked to think aloud (ie, verbalize their thoughts). A thematic analysis was implemented to explore key issues related to decision aid usability.ResultsAlthough patients and doctors found InformedTogether acceptable and would recommend that doctors use the decision aid with COPD patients, many patients had difficulty understanding the icon arrays that were used to communicate estimated prognoses and could not articulate the definitions of the two treatment choices—Full Code and Do Not Resuscitate (DNR). Minor usability problems regarding content, links, layout, and consistency were also identified and corresponding recommendations were outlined. In particular, participants suggested including more information about potential changes in quality of life resulting from the alternative advance directives. Some doctor participants thought the decision aid was too long and some thought it may cause nervousness among patients due to the topic area.ConclusionsA decision aid for shared advance care planning for severe COPD was found acceptable to most COPD patients and their doctors. However, many patient participants did not demonstrate understanding of the treatment options or prognostic estimates. Many participants endorsed the use of the decision aid between doctors and their patients with COPD, although they desired more information about quality of life. The design must optimize comprehensibility, including revising the presentation of statistical information in the icon array, and feasibility of integration into clinical workflow, including shortening the decision aid.