Background More than half of patients with a terminal diagnosis want to die at home.
NICE recommend provision of injectable anticipatory medications as a way of managing symptoms and facilitating this. However, there is little published evidence regarding the experience of caregivers in relation to anticipatory medications. The primary objective of this study was to explore these experiences and secondly ways to improve practice.
Methods We developed a questionnaire with public involvement and sent it to 100 consecutive caregivers, 3 to 9 months post bereavement. Carers were identified from hospice notes as having been issued anticipatory medicines to have in the home. Data was analysed using descriptive statistics and thematic analysis of free text comments.
Results The response rate to the survey was 38%. The majority were spouses of the deceased (61%). Most patients died at home (63%) and 82% had cancer.
87% of carers said there were benefits of having anticipatory medications available. The majority were reassured that medicine would be readily available when needed to provide symptom relief. However, some people found medicines distressing as they highlighted that death was imminent. Some expressed concern about storage of medication and potential for waste.
Several people commented that they were unable retain all the verbal information given but there were mixed views on potential usefulness of having written information.
Just over half reported that the medication was used; usually for pain or agitation with good effect.
Of those patients that did require the medications the most common problems carers experienced were: delay in a health care professional attending to administer medication (29%); knowledge of the person attending (24%) and deciding when to call for help (21%).
Conclusion Most caregivers find having these medicines is a generally positive experience but some experience challenges and there are areas for practice development.
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