Mind the gap: Patients' experiences and perceptions of goal setting in palliative care

Abstract

Background: Palliative care aims to support people to live actively until death. A rehabilitative approach which includes goal setting could be an important way of achieving this. Goal setting is well established in best practice guidelines for palliative care. However little is known about how the process of goal setting actually happens in practice, especially from patients’ points of view. We aimed to investigate patients’ expectations, experience and perceptions of goal setting in one hospice. Methods: We conducted 15 semi-structured interviews with a sample of patients who had been admitted to a Scottish hospice for symptom control. Interviews were digitally recorded, transcribed verbatim and analysed using Framework Analysis. Results: Participants understood and valued goal setting but did not always share their goals with hospice staff. These were often participants’ own personal activity-based goals that they worked on in parallel, but not always in partnership with hospice professionals. Participants were able to adapt their goals as their situation changed. Conclusions: Our findings revealed a gap between the goals that participants identified and worked towards compared with those that participants perceived the professionals focussed on. As a result, opportunities were missed for patients and professionals to work together to achieve goals.