3 Mapping patient and carer experiences with injectable anticipatory medications in community settings: identifying opportunities for improvement

<h3>Background</h3> Injectable anticipatory medications are routinely prescribed ahead of need to relieve distressing end-of-life symptoms. However, insufficient is known about patients’ and carers’ lived experiences of navigating their prescribing and use. We aimed to understand patient journeys in navigating anticipatory medication care and to identify interactions with the greatest potential for improvement. <h3>Methods</h3> Qualitative secondary analysis of longitudinal interview data from 11 patient-centred cases, comprising 28 interviews with patients, carers and clinicians. Using framework analysis and patient journey methods from engineering design, we coded contexts and patient and carer experiences related to prescribing, dispensing and use of injectable anticipatory medications. We developed three patient personas and visually mapped their journeys. <h3>Results</h3> We identified three factors affecting patient journeys – Perceptions of anticipatory medications – while patients and carers appreciated the intent behind anticipatory medications, some people found them unhelpful once used. Others expressed concerns about oversedation or hastening death. Quality of information exchange – differences in understanding between patients, carers, and clinicians regarding when anticipatory medications would be used was a source of frustration and distress. Ability to navigate healthcare systems – patients who could self-advocate or lived with their family carers, navigated unfamiliar end-of-life care systems more successfully than those who lived alone or had communication difficulties. <h3>Conclusions</h3> Mapping journeys with injectable anticipatory medications using engineering design concepts provided a novel way to illustrate varied patient contexts, and highlighted how people’s experiences differed from intended pathways. There are significant opportunities to improve open and ongoing conversations with patients and carers regarding the purpose, safety, and threshold for using anticipatory medications. Patients’ different living circumstances and their abilities to access help also need to be considered. Finally, simplified channels for patients and carers to contact clinicians for advice and anticipatory medication input will help with timely symptom management in the community.