Background Healthcare professionals believe that anticipatory prescribing of injectable medications provides reassurance, improves symptom control and prevents hospital admissions. Carers’ roles are intertwined with use of these medications in the home, but little is known about how anticipatory prescribing impacts on them.
Method Semi-structured interviews were undertaken with bereaved carers to explore their experiences, feelings and perspectives relating to when a family member was prescribed anticipatory medications at home. Interviews were conducted throughout the Covid pandemic with changing restrictions, such that the last interviews were conducted in December 2020. Eight participants were recruited in liaison with the community palliative care team; their views about how the medications were introduced and used were recorded. Three interviews were via video-consultation, the others in person. Recruitment was terminated when data saturation was achieved, and transcripts were reviewed using thematic content analysis.
Results Three main themes were identified. 1) Anticipatory medications were accepted in the home (despite inadequate explanation) because symptoms or suffering were expected. 2) Medications did not have the presumed effect (with a perception of lack of benefit and harm). 3) Emotional burden on carers (dealing with death alongside feelings of loss of control and being unheard).
Conclusion This study suggests a mismatch between the intended benefits and actual contribution of anticipatory prescribing to end of life care at home. Perceptive explanation, accounting for distressing circumstances, needs to be provided to carers when these medications are introduced, including expected benefits and limitations. Such prescribing should not be a surrogate for naming dying. The interviews reinforced the inequality between hospice care and dying at home, particularly in the out of hours setting. Hospice at home care positively influences carers’ experiences. The Covid pandemic changed the approach to dying. Visiting restrictions in hospices became a determinant to die at home, but fewer healthcare professionals made home visits.
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