Skip to main content Accessibility help

Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions

  • Eleanor Wilson (a1), Jane Seymour (a1) and Aimee Aubeeluck (a1)



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).


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.


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.


Corresponding author

Address correspondence and reprint requests to: Eleanor Wilson, B63a B Floor, Sue Ryder Care Centre for Palliative and End of Life Studies, Medical School, Queen's Medical Centre, Nottingham, NG7 2UH, United Kingdom. E-mail:


Hide All
Byrne, J., McNamara, P., Seymour, J., et al. (2009). Palliative Care in Neurological Disease: A Team Approach. Oxford: Radcliff Publishing.
Dawson, S., Kristjanson, L., Toye, C., et al. (2004). Living with Huntington's disease: Needs for supportive care. Nursing and Health Sciences, 6, 123130.
Department of Health (2006). NHS End of Life Care Programme: Progress Report, pp. 124.
Edmonds, P. & Rogers, A. (2003). “f only someone had told me…” A review of the care of patients dying in hospital. Clinical Medicine, 3, 149152.
Ellershaw, J. & Wilkinson, S. (2003). Care of the Dying: A Pathway to Excellence. Oxford: Oxford University Press.
Ersek, M., Kraybill, B. & Hansberry, J. (2000). Assessing the educational needs and concerns of nursing home staff regarding end-of-life care. Journal of Gerontological Nursing, 26, 1626.
Fitzsimons, D., Mullan, D., Wilson, J.S., et al. (2007). The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliative Medicine, 21, 313322.
Forbes-Thompson, S. & Gessert, C. (2005). End of life in nursing homes: Connections between structure, process, and outcomes. Journal of Palliative Medicine, 8, 545555.
Giles, S. & Miyasaki, J. (2009). Palliative stage Parkinson's disease: Patient and family experiences of health-care services. Palliative Medicine, 23, 120125.
Heyland, D., Dodek, P., Rocker, G., et al. (2006). What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. Canadian Medical Association Journal, 174, 19.
Klager, J., Duckett, A., Sandler, S., et al. (2008). Huntington's disease: A caring approach to the end of life. Care Management Journals, 9, 7581.
Kristjanson, L., Toye, C. & Dawson, S. (2003). New dimensions in palliative care: A palliative approach to neurodegenerative disease and final illness in older people. Medical Journal of Australia, 179, S41S43.
Lynn, J. & Forlini, J. (2001). “Serious and complex illness” in quality improvement and policy reform for end-of-life care. Journal of General Internal Medicine, 16, 315319.
Menken, M., Munsat, T.L. & Toole, J.F. (2000). The Global Burden of Disease Study: Implications for neurology. Archives of Neurology, 57, 418420.
Moskowitz, C.B.& Marder, K. (2001). Palliative care for people with late-stage Huntington's disease. Neurologic Clinics, 19, 849865.
Munn, J. & Zimmerman, S. (2006). A good death for residents of long-term care: Family members speak. Journal of Social Work in End-Of-Life and Palliative Care, 2, 4559.
Munn, J.C., Dobbs, D., Meier, A., et al. (2008). The end-of-life experience in long-term care: five themes identified from focus groups with residents, family members, and staff. Gerontologist, 48, 485494.
Murray, C.J.L. & Lopez, A.D. (1997). Global mortality, disability, and the contribution of risk factors: Global Burden of Disease Study. The Lancet, 349, 14361442.
The Neurological Alliance (2003). Neuro Numbers: A Brief Review of the Numbers of People in the UK with a Neurological Condition. 112.
Pleschberger, S. (2007). Dignity and the challenge of dying in nursing homes: The residents’ view. Age and Ageing, 36, 197202.
Pratt, L. (2006). Long-term conditions 5: Meeting the needs of highly complex patients. British Journal of Community Nursing, 11, 234240.
Sachs, G.A., Shega, J.W. & Cox–Hayley, D. (2004). Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine, 19, 10571063.
Smith, R. (2000). A good death: An important aim for health services and for us all. British Medical Journal, 320, 129130.
Spinney, L. (2010). Uncovering the true prevelance of Huntington's disease. Lancet Neurology, 9, 760761.
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Medical Association, 284, 24762482.
Travers, E., Jones, K. & Nicol, J. (2007). Palliaitve care provision in Huntington's disease. International Journal of Palliative Nursing, 13, 125130.
Walsh, K. & Kowanko, I. (2002). Nurses’ and patients’ perceptions of dignity. International Journal of Nursing Practice, 8, 143151.
Weightman, C. (2006). Long-term management of patients with multiple sclerosis. British Journal of Community Nursing, 11, 303307.
Wilson, E., Seymour, J. & Aubeeluck, A. (2008). Exploring the Palliative Care Needs of Service Users with Neurological Conditions–Final Report. Nottingham: University of Nottingham.
Wilson, E., Seymour, J.E. & Perkins, P. (2010) Working with the Mental Capacity Act: Findings from specialist palliative and neurological care settings. Palliative Medicine, 24, 396402.
Young, A., Rogers, A., Dent, L., et al. (2009). Expereinces of hospital care reported by bereaved relatives of patients after a stroke: A retropsective survey using the VOICES questionnaire. Journal of Advanced Nursing, 65, 21612174.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
  • URL: /core/journals/palliative-and-supportive-care
Please enter your name
Please enter a valid email address
Who would you like to send this to? *



Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed