Background The prescription of injectable anticipatory medications (AMs) is a common community-based end-of-life care intervention. Practice is largely based on clinicians’ beliefs that the availability of AMs in the patient’s home offers reassurance to all involved and effective control of symptoms. Patients and informal caregivers’ views and experiences of AMs have been insufficiently studied.
Aim To understand patients’, informal caregivers’ and clinicians’ views and experiences of decisions to prescribe and use AMs.
Methods A multi-perspective, longitudinal, qualitative interview study based on 11 patient cases, with three month follow-up. Cases included 21 participants: six patients, nine informal caregivers and six clinicians. Data were collected between May and December 2020. Semi-structured interviews (n = 28) were audio recorded and analysed inductively using thematic analysis.
Three themes were identified 1) ‘Living in the present whilst making plans’: AMs were used as a practical tool in planning for future unknowns, whilst patients and informal caregivers tried to concentrate on living in the present; 2) ‘Future images of dying’: Participants were concerned that dying could be painful and distressing. However, discussion of the process of dying and the role of AMs in controlling symptoms was often vague, inadequate or even absent. Some patients and informal caregivers expressed ambivalence about AMs and perceived that they might hasten death; 3) ‘Accessing appropriate care’: Getting AMs administered posed a significant challenge for families, despite assurances that drugs would be given when needed. Although administered AMs generally helped symptom control, some informal caregivers reported difficulties in persuading nurses to administer them to patients.
Conclusion Anticipatory prescriptions are a nuanced and complex intervention, needing careful discussion and tailoring to the preferences and experience of patients and families. Nurses’ decisions to administer medication should consider informal caregiver insights into patient distress, especially when patients can no longer communicate.
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