Viewing patient need through professional writings: a systematic 'ethnographic' review of palliative care professionals' experiences of caring for people with cancer at the end of life

摘要

Aim: A systematic review of palliative care professionals' written accounts of caring for people with cancer who are knowingly facing death; in order to provide another source of evidence on patients' needs.Methods: Systematic review methodology was utilised to locate published 'reflective narratives' (not original research) written by palliative care professionals from a variety of disciplines and institutional settings, which focused on the experiences of caring for patients with cancer as they approached their death. The search strategy yielded 2224 texts which were reduced to a dataset of 202 after the application of the inclusion/exclusion criteria. A quantitative analysis was conducted on the full data set and a qualitative analysis was performed on a selected sub-sample.Main results: Professionals identify a wide range of needs of people with cancer at the end of life. They write particularly forcefully about: patient autonomy; choice and control; access to information; and full participation in decision-making about patient care. However, closer examination of the texts demonstrates that professionals may also have fixed expectations about: management of patients' emotion; over emphasise choice and control; lack recognition of power in the patient–professional relationship; and tend to homogenise patient needs.Conclusions: The research raises questions about professionals' interpretation of patient needs and suggests that the care received by people with advanced cancer is still firmly framed within biomedical culture and the social organisation of medicine, which struggle to acknowledge individual autonomy and meet the diversity of individual end-of-life needs.