Abstract

A detailed health needs assessment (HNA) for end-of-life care (EoLC) services was led by public health in Leeds to inform a commissioning strategy. To answer the question: are we delivering the best possible EoLC services within the resources available? Mixed methods were used with three approaches: epidemiological, corporate and comparative. More people from deprived communities die in hospital. 18% of people who die each year are on a palliative care register, reflecting a lack of recognition and planning for EoLC given that 75% of people who die need EoLC. Over 100 staff, patients and carers were interviewed and over 200 staff returned questionnaires. Staff highlighted concerns about capacity of services; pressure on out-of-hospital care; problems at physical and electronic interfaces between services; suboptimal hospital discharge; need for earlier recognition of the EoL stage for patients. Patients and carers stressed the importance of communication, coordination and continuity of care; full involvement in care planning; honesty and support for the bereaved; an advocate for patients and families; accessible information; improved urgent care; integrated team working; pain relief, dignity and respect. Issues from comparator sites included the need for sustainable leadership for change, lack of interoperability between IT systems; building advance care planning into working culture; gaps in psychological services, bereavement and pastoral support; integration within all clinical areas; lack of district nurses; few investment opportunities; getting home care support right; concerns about 111; incentives for general practitioners to deliver EoLC; variability in service and the Liverpool Care Pathway controversy. Ethical approval was not sought as the HNA was undertaken as a service evaluation. Local policy is that ethical approval is not required for service evaluation.