Background: Recent changes in primary health care in the UK have caused professional concern about how palliative care patients’ needs are met outside normal working hours. This is the first study to address patient views.
Aims: 1. To gain the perspectives of patients with advanced cancer, their informal and professional carers concerning their needs and experiences of out-of-hours nursing and medical services. 2. To collate these views to address the quality and accessibility of out-of-hours palliative care.
Methods:
• In-depth interviews with 36 patients with advanced cancer and their carers who had recently used out-of-hours services in three contrasting areas in Scotland
• Eight focus groups to explore lay views
• Semi-structured interviews with 50 key professionals
Analysis: Interviews and focus groups were tape recorded, transcribed, and analysed according to the research questions and emerging themes, aided by NVivo and techniques of narrative analysis.
Results: Patients with advanced disease and carers doubted the legitimacy of their needs for out-of-hours care. They lacked information about services, felt isolated from their usual support mechanisms and perceived out-ofhours provision as impersonal. Symptoms such as pain or unexpected changes in the patient’s condition provoked fear and anxiety. Aspects of good practice and significant gaps in out-of-hours care were identified, concerning access to specialist advice, triage, carer support, rapid-response services, and transfer of information from in-hours services. Place of death and the quality of the experience of dying were influenced by out-of-hours provision.
Conclusions: Out of hours, people with advanced cancer need integrated, multidisciplinary services, both pre-planned and those able to respond rapidly in an emergency. Patient and carer experiences can inform service redesign.