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

BackgroundInjectable 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. AimTo understand patient journeys in navigating anticipatory medication care, and to identify interactions with the greatest potential for improvement. DesignQualitative secondary analysis of longitudinal interview data using framework analysis and patient journey mapping techniques. Setting/participantsEleven patient-centred cases receiving end-of-life care in the community. Six patients, nine informal caregivers and five healthcare professionals took part (28 interviews). ResultsPatient 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. ConclusionsPatient 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. Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LIAnticipatory prescribing is considered best practice in aiding the timely control of distressing end-of-life symptoms in the community. C_LIO_LIThe intended pathway for prescribing and using injectable anticipatory medications in the community is complex, consisting of many decision-making points and practical activities. C_LIO_LILittle is known about patients and families experiences of this care C_LI What this paper addsO_LIThe use of journey mapping techniques illustrates how patients and informal caregivers experiences of navigating anticipatory medications differ from the intended pathway. C_LIO_LIPatient personas highlight how individual patient characteristics and advocacy skills greatly influence journeys with anticipatory medications. C_LIO_LIPatients and informal carers find the systems for using anticipatory medications inherently complex and clear professional signposting is needed. C_LI Implications for practice, theory or policyO_LIpen and ongoing conversations about the purpose and use of anticipatory medications need to be tailored to individual patient and informal carer contexts. C_LIO_LIexperiential journey mapping techniques and personas is an innovative method for giving patients and their families a voice to help improve cross-organisational systems for delivering end-of-life care. C_LI