Eleanor Wilson1, Jane Seymour, Aimee Aubeeluck. 1. Sue Ryder Care Centre for Palliative and End of Life Studies, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, UK. eleanor.wilson@nottingham.ac.uk
Abstract
OBJECTIVE: This article examines the views and opinions of staff from a larger study exploring the palliative and end-of-life care needs of patients with progressive long-term neurological conditions (PLTNC). METHOD: Eighty staff, in a range of professions from three types of care services provided to people with PLTNC in England, took part in 14 focus groups and 3 individual interviews. Sites included six long-term residential neurological care centers, an inpatient service at an urban hospice, and a multi-disciplinary outpatient service for people with Huntington's disease. RESULTS: Findings show a concordance between the views of staff from across the three types of participating services. Staff placed particular emphasis on teamwork, support from community-based resources, and developing rapport with patients in order to provide high quality palliative and end-of-life care. All staff perceived that identifying the dying phase was a particular challenge, sometimes resulting in patients being admitted to hospital at the end of life in contravention of their expressed advance wishes for place of death. SIGNIFICANCE OF RESULTS: This article adds to a small body of literature that seeks staff views and opinions about the rewards and challenges of providing palliative and end-of-life care to people with complex needs arising from long-term conditions. Although this article focuses primarily on the challenges of caring for people with neurological conditions, many issues reported are of wider relevance for the delivery of palliative and end-of-life care in other conditions.
OBJECTIVE: This article examines the views and opinions of staff from a larger study exploring the palliative and end-of-life care needs of patients with progressive long-term neurological conditions (PLTNC). METHOD: Eighty staff, in a range of professions from three types of care services provided to people with PLTNC in England, took part in 14 focus groups and 3 individual interviews. Sites included six long-term residential neurological care centers, an inpatient service at an urban hospice, and a multi-disciplinary outpatient service for people with Huntington's disease. RESULTS: Findings show a concordance between the views of staff from across the three types of participating services. Staff placed particular emphasis on teamwork, support from community-based resources, and developing rapport with patients in order to provide high quality palliative and end-of-life care. All staff perceived that identifying the dying phase was a particular challenge, sometimes resulting in patients being admitted to hospital at the end of life in contravention of their expressed advance wishes for place of death. SIGNIFICANCE OF RESULTS: This article adds to a small body of literature that seeks staff views and opinions about the rewards and challenges of providing palliative and end-of-life care to people with complex needs arising from long-term conditions. Although this article focuses primarily on the challenges of caring for people with neurological conditions, many issues reported are of wider relevance for the delivery of palliative and end-of-life care in other conditions.
Authors: Emma Carduff; Sarah Johnston; Catherine Winstanley; Jamie Morrish; Scott A Murray; Juliet Spiller; Anne Finucane Journal: BMC Palliat Care Date: 2018-01-04 Impact factor: 3.234