Hostname: page-component-8448b6f56d-42gr6 Total loading time: 0 Render date: 2024-04-19T23:11:09.651Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  22 November 2011

Eleanor Wilson ,
Jane Seymour  and
Aimee Aubeeluck
Eleanor Wilson*
Affiliation:
Sue Ryder Care Centre for Palliative and End of Life Studies, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, United Kingdom
Jane Seymour
Affiliation:
Sue Ryder Care Centre for Palliative and End of Life Studies, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, United Kingdom
Aimee Aubeeluck
Affiliation:
Sue Ryder Care Centre for Palliative and End of Life Studies, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, United Kingdom
*
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: eleanor.wilson@nottingham.ac.uk
Get access Rights & Permissions [Opens in a new window]

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.

Keywords

Palliative careEnd of lifePLTNCStaff perspectivesQualitative methods
Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 4 , December 2011 , pp. 377 - 385
Copyright
Copyright © Cambridge University Press 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Byrne, J., McNamara, P., Seymour, J., et al. (2009). Palliative Care in Neurological Disease: A Team Approach. Oxford: Radcliff Publishing.Google Scholar
Dawson, S., Kristjanson, L., Toye, C., et al. (2004). Living with Huntington's disease: Needs for supportive care. Nursing and Health Sciences, 6, 123–130.CrossRefGoogle ScholarPubMed
Department of Health (2006). NHS End of Life Care Programme: Progress Report, pp. 1–24.Google Scholar
Edmonds, P. & Rogers, A. (2003). “f only someone had told me…” A review of the care of patients dying in hospital. Clinical Medicine, 3, 149–152.CrossRefGoogle Scholar
Ellershaw, J. & Wilkinson, S. (2003). Care of the Dying: A Pathway to Excellence. Oxford: Oxford University Press.CrossRefGoogle Scholar
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, 16–26.CrossRefGoogle ScholarPubMed
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, 313–322.CrossRefGoogle ScholarPubMed
Forbes-Thompson, S. & Gessert, C. (2005). End of life in nursing homes: Connections between structure, process, and outcomes. Journal of Palliative Medicine, 8, 545–555.CrossRefGoogle ScholarPubMed
Giles, S. & Miyasaki, J. (2009). Palliative stage Parkinson's disease: Patient and family experiences of health-care services. Palliative Medicine, 23, 120–125.CrossRefGoogle ScholarPubMed
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, 1–9.CrossRefGoogle ScholarPubMed
Klager, J., Duckett, A., Sandler, S., et al. (2008). Huntington's disease: A caring approach to the end of life. Care Management Journals, 9, 75–81.CrossRefGoogle ScholarPubMed
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, S41–S43.CrossRefGoogle ScholarPubMed
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, 315–319.CrossRefGoogle ScholarPubMed
Menken, M., Munsat, T.L. & Toole, J.F. (2000). The Global Burden of Disease Study: Implications for neurology. Archives of Neurology, 57, 418–420.CrossRefGoogle ScholarPubMed
Moskowitz, C.B.& Marder, K. (2001). Palliative care for people with late-stage Huntington's disease. Neurologic Clinics, 19, 849–865.CrossRefGoogle ScholarPubMed
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, 45–59.CrossRefGoogle ScholarPubMed
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, 485–494.CrossRefGoogle ScholarPubMed
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, 1436–1442.CrossRefGoogle ScholarPubMed
The Neurological Alliance (2003). Neuro Numbers: A Brief Review of the Numbers of People in the UK with a Neurological Condition. 1–12.Google Scholar
Pleschberger, S. (2007). Dignity and the challenge of dying in nursing homes: The residents’ view. Age and Ageing, 36, 197–202.CrossRefGoogle ScholarPubMed
Pratt, L. (2006). Long-term conditions 5: Meeting the needs of highly complex patients. British Journal of Community Nursing, 11, 234–240.CrossRefGoogle ScholarPubMed
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, 1057–1063.CrossRefGoogle ScholarPubMed
Smith, R. (2000). A good death: An important aim for health services and for us all. British Medical Journal, 320, 129–130.CrossRefGoogle Scholar
Spinney, L. (2010). Uncovering the true prevelance of Huntington's disease. Lancet Neurology, 9, 760–761.CrossRefGoogle Scholar
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, 2476–2482.CrossRefGoogle ScholarPubMed
Travers, E., Jones, K. & Nicol, J. (2007). Palliaitve care provision in Huntington's disease. International Journal of Palliative Nursing, 13, 125–130.CrossRefGoogle Scholar
Walsh, K. & Kowanko, I. (2002). Nurses’ and patients’ perceptions of dignity. International Journal of Nursing Practice, 8, 143–151.CrossRefGoogle ScholarPubMed
Weightman, C. (2006). Long-term management of patients with multiple sclerosis. British Journal of Community Nursing, 11, 303–307.CrossRefGoogle ScholarPubMed
Wilson, E., Seymour, J. & Aubeeluck, A. (2008). Exploring the Palliative Care Needs of Service Users with Neurological Conditions–Final Report. Nottingham: University of Nottingham.Google Scholar
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, 396–402.CrossRefGoogle ScholarPubMed
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, 2161–2174.CrossRefGoogle Scholar