7 Views of care at end of life: An action research study exploring the best ways of eliciting patient and family views of end of life care and giving real time feedback in acute hospitals

Context People dying in hospitals without specialist palliative care (SPC) input may suffer with significant unmet needs, unrecognised until case-note audit after death. Objectives To evaluate the care of dying hospital inpatients unknown to SPC services across the United Kingdom to better understand their needs and identify factors impacting care of this cohort. Methods Prospective one day UK-wide service evaluation including all dying adult inpatients, excluding those in Emergency Departments/Intensive Care Units. Holistic needs and use of recognised end-of-life care plans (EOLCP) were assessed for those unknown to SPC. Results 88 hospitals, 284 patients. Nearly all patients had unmet holistic needs (93%) which included physical symptoms (75%) and psychological, social and spiritual needs (86%). A dying patient was more likely to have unmet needs and require SPC intervention at a District General Hospital (DGH) compared to a Teaching Hospital/Cancer Centre (Unmet need 98.1% v 91.2% p0.02; Intervention 70.9% v 50.8% p0.001) and when an EOLCP was not utilised (Unmet need 98.3% v 90.3% p0.006; Intervention 67.2% v 53.3% p0.02). Multivariable analyses demonstrated that teaching/cancer hospitals (aOR 0.44 CI 0.26–0.73) and increased SPC medical staffing (aOR 1.69 CI 1.04–2.79) independently influenced need for intervention. However, integration of the use of an EOLCP within the model reduced the impact of SPC medical staffing. Conclusion People dying in hospitals unknown to SPC have significant unmet needs. Further evaluation is required to understand the relationships between patient, staff and service factors in best meeting dying peoples’ needs. The effective content and implementation of EOLCP warrants further investigation.