Approximately 40 percent of Americans over the age of 65 do not have advance directives or written end-of-life (EOL) wishes related to medical treatment. Even when these documents exist, they are often ineffective due to ambiguity or incompleteness. As of January 2016, Medicare covers advance care planning services provided by qualified healthcare providers. This policy change is meant to assure the delivery of patient-centered care in the event a patient is unable to speak for themselves. While there is broad public support for this policy change, no quality metrics and standards for clinician-patient communication related to end-of-life care have been established.
Our aim is to build relationships between older adults (patients and caregivers), providers, and researchers around what meaningful EOL clinician-patient communication looks like. First, we will engage older adults, and using a “StoryCorps” format, invite them to share their preferences and experiences about planning for EOL medical care. Second, these recorded stories will be shared with healthcare providers currently engaged in a communitywide advance care planning initiative. Third, these older adults, providers, and local researchers will be invited to participate in a learning community to build a shared understanding of how clinician-patient communication and shared planning can be improved, and to generate ideas for system changes that can be evaluated with a future PCORI research project.