End-of-life care in neurodegenerative conditions: outcomes of a specialist palliative neurology service.

BACKGROUND: People with advanced neurological conditions (ANCs) face complex problems and needs that are often unrecognised and undertreated.Their last year of life may be characterised by unplanned hospital admissions and an unexpected death. A National End-of-Life Care Programme (NEoLCP) 2010 framework made recommendations to aid timely and appropriate end-of-life care for people with ANCs.

OBJECTIVES: Assessment of key outcomes of a UK nurse-led palliative neurology service against the NEoLCP standards.

METHOD: A retrospective study of clinical records of patients who died from an ANC under the care of the service from December 2006 to April 2012.

RESULTS: All 62 patients had multidisciplinary care coordinated by a key worker-a clinical nurse specialist (CNS) in palliative neurology. Mental capacity was assessed in 95% of cases, of which 95% had a documented advance care plan or best interest decision.The CNS had specific input regarding carer distress in 77% of cases. Mean hospital admissions were 0.9 per patient in the last year of life, compared with 3.5 nationally across all diagnoses. The service demonstrated better outcomes in other key areas, including place of death, with more patients dying at home or in the hospice compared with national figures.

CONCLUSION: This service model fulfils key NEoLCP recommendations, as well as resulting in low hospital admissions and deaths.