"It's not just about the patient, it's the families too.": End of life care in the home environment

Introduction: Most people when asked say they would prefer to die at home. However, ‘Death in Usual Place of Residence’ (DiUPR) does not give any real insight into the quality and experiences of care received. Additionally, DiUPR involves other family members resident in the home environment and their needs, preferences and experiences also need consideration.

Aim(s) and Method(s): The aim of this work was to explore the experiences of patients and informal caregivers receiving at-home care from a specialist palliative care service. We undertook individual interviews with 11 patients and 10 significant others. We used the Pictor technique, a novel interview tool used to sensitively explore networks of support and experiences of palliative care. Interviews were analysed thematically.

Results: Caring for a loved one at home was acknowledged as draining, but participants were effusive about the excellent at-home professional support they received from the specialist service. The care provided evidently recognised the needs of both patients and their families. Effective co-ordination of care, including liaison with other services was especially appreciated.

Conclusion(s): With increasing trends towards DiUPR, it is vital that there are sufficient well-resourced palliative care services available in the community to support both patients and their families at the end of life. Pictor is a useful means to obtain detailed insight into individual experiences of end of life care. Care co-ordination emerged as key concern for patients receiving End of Life Care and their families.