Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study

Abstract

Background: Palliative care improves quality of life for people with life-threatening illnesses. There are longstanding inequalities in access to palliative care, with many people never identified as having palliative care needs, particularly the frail elderly, those with non-malignant disease and people from ethnic minority backgrounds. Little is known about the process of identification of palliative care needs from a patient perspective. Aim: To provide new understanding into patient views and experiences of the process of identification of palliative care needs, and to explore the impact of identification on healthcare, if any, from a patient perspective. Design and Setting: Qualitative interview study with patients and family carers in a UK major city. Method: Semi-structured interviews with patients (+/- family carers) identified as being on general practice palliative care registers. An inductive thematic analysis was conducted to explore the data. Findings: 11 participants were recruited: eight patients and three family carers. Three interrelated themes were identified: (1) misconceptions about palliative care and unshared prognostic uncertainty hinder the identification of palliative care needs, (2) a compassionate, careful approach is required for identification of palliative care needs, with or without an identification tool, and (3) identification of palliative care needs is beneficial where it leads to proactive holistic care. Conclusion: A compassionate approach, sharing of prognostic uncertainty and proactive primary care are key to timely, beneficial identification of palliative care needs. Future policy should ensure that identification is an adaptable, personalised process to meet the individual needs of people with advanced serious illnesses.