Mapping patient journeys: exploring patient and informal carer experiences of injectable anticipatory medication care in the community to identify opportunities for practice improvements

Background: Injectable anticipatory medications are routinely prescribed ahead of need in many countries to help manage distressing end-of-life symptoms. However, little is known about the lived experience of patients and informal caregivers as they navigate their prescription, supply and use. Aim: To explore and map patient journeys in navigating anticipatory medication care, and to identify healthcare interactions with the greatest potential for enhancing patient and informal caregiver experiences of care. Design: Qualitative secondary analysis of longitudinal interview data using framework analysis and patient journey mapping techniques. Setting/participants: Adults (18+) prescribed anticipatory medications (n=6), informal caregivers (n=9) and health care professionals involved in their care (n=5). Results: Visually mapping journeys highlighted that patients and informal caregivers’ experiences of anticipatory medication processes varied greatly and were influenced by the context of care. All participants appreciated access to injectable medications for future symptom control, however, journeys repeatedly highlighted suboptimal information exchange between patients, informal caregivers and healthcare professionals regarding their purpose and threshold for use. Navigating unfamiliar and complex end-of-life medication support systems was more challenging when patients lived alone or experienced communication difficulties. Conclusions: Patient and informal caregiver experiences of timely symptom control could be improved by healthcare professionals having open and ongoing conversations about the role of anticipatory medications. Simplified and well-signposted routes for accessing healthcare professional advice and medication input are needed. Using journey mapping offers a novel way to visually illustrate different patient and informal caregivers lived experience and can be adapted for researching experiences of various care pathways.