EARLY LESSONS FROM TESTING A “ONE SIZE FITS ALL” DECISION AID FOR END-OF-LIFE CARE IN ADVANCED STAGE COPD
Methods: We recruited 27 participants and held separate research study sessions for each stakeholder group: physicians (n=7), patients (n=11), family/caregivers (n=4), and a mixed-group of stakeholders (n=5). Sessions were comprised of three activities: 1) participant use of the decision aid with usability tasks, 2) one-on-one semi-structured interviews, and 3) participation in a focus group. Interview and focus group questions elicited stakeholder perceptions of our decision aid, understanding of the information presented, factors impacting decision making, and recommendations for improvement. Audio recordings were transcribed for thematic analysis. Themes were compared, revised, and interpreted within the context of decision aid revisions. Triangulation of data collected from each session and from the three activities was performed to increase comprehensiveness and robustness of data analysis.
Results: All participants felt the decision aid could facilitate this difficult conversation, and found the web-based platform acceptable. There was consensus for: wanting more information on establishing an advance directive; believing that quality of life issues were the most important factors in decision making; desiring information detailing quality of life after mechanical ventilation; and for technical improvements such as navigation and adding a glossary and links to forms. On the other hand: some participants found the information too shocking (“a slap in the face”), while others wanted more explicit and realistic information; and some participants recommended that potentially upsetting information about the likelihood of dying be placed upfront, while others felt it should appear later on in the tool. There were also varying opinions about when the decision aid should be introduced. As expected, those with lower numeracy had difficulty understanding data from pictographs. Additionally, analysis revealed that lived experiences with end-of-life treatments may have influenced participants’ ability to understand the data, and their willingness to incorporate the data into their decision making.
Conclusions: A decision aid designed to inform end-of-life decision making for advanced stage COPD needs to allow for heterogeneity in the level of detail wanted and preferences for the ways in which that information is presented; and consider the impact of lived experience on understanding prognostic information and the informed decision making process.