Project Duration
July 2006 – September 2007
Funder
NHS End of Life Care Programme
Project Staff
- Jane Seymour 1
- Karen Cox 1
- Sheila Kennedy 1
- Tony Arthur 1
- Kathy Almack 1
- Nima Moghaddam 1
Staff Institutions
- The University of Nottingham
Aims
Over the last decade, it has been demonstrated that although there has been a gradual expansion of palliative care into the mainstream, access to specialist services in several countries including the UK has remained unequal. People affected by non cancer, progressive diseases; from ethnic minorities, and in older age groups are particularly poorly served. Exploring this in the UK, some observers argue that many health authorities tend to regard specialist palliative care services as an 'optional extra', ignoring the potential for specialist palliative care providers to support generic health and social care services for sufferers of non cancer disease.
In addressing these issues, the Department of Health launched the 'NHS End of Life Care Programme' (2004). This England wide service and practice development initiative has a specific focus on improving equity of access and quality of end of life care for all adults by supporting local innovation and service development.
Methods
Our evaluation of the NHS End of Life Care Programme was conducted in three phases:
- A scoping and synthesis of available existing data from ONS data and end of life tool uptake data from across strategic health authorities (n=28)
- An audit of documented care received across four services in the last four weeks of life (n=65)
- Interviews and focus groups with stakeholders (n=37) involved in developing and implementing the programme
Outcomes and Findings
Findings from the scoping exercise suggested that there were high levels of geographical variability in the proportion of people who die at home, and the proportion of care home residents who die in hospital. In the audit of documented care we found a lack of systematic recording of advance care planning discussions and variability in the recording of discussions about end of life care. In contrast, medication administration and prescription was recorded consistently and clearly across the four services.
For stakeholder interview participants, decisions delegated to area level, leadership of the National Programme Team, and clear central direction were considered as factors key to the success of the programme. The evaluation provided information to the Advisory Board charged with developing the End of Life Care Strategy. It highlights both successes from and challenges to the Programme's aims to improve the accessibility and quality of end of life care across all care settings, and provides insights into key issues in directing and implementing sustainable changes in the organisation and delivery of end of life care services.