Mapping patient journeys: a novel method to explore patient and carer experiences of injectable anticipatory medication care in the community and identify opportunities for improvement

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 the prescription and use of anticipatory medications. Aim: To understand patient journeys in navigating anticipatory medication care, and to identify interactions with the greatest potential for improvement. Design: Qualitative secondary analysis of longitudinal interview data using framework analysis and patient journey mapping techniques. Setting/participants: Eleven patient-centred cases receiving end-of-life care in the community. Six patients, nine informal caregivers and five healthcare professionals took part (28 interviews). Results: Patient journeys with anticipatory medications differed from intended pathways. Participants appreciated having access to injectable medications for future symptom control. However, there was 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 pathways was more successful where patients could self-advocate or had live-in informal caregiver advocates, compared to those who 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. Different patient contexts and fluctuating abilities point to a need for simplified and better signposted ways for accessing healthcare professional advice, and medication input. Journey mapping techniques offer a novel way to illustrate patient and informal caregivers lived experience and can be adapted for researching other pathways.