Hostname: page-component-8448b6f56d-cfpbc Total loading time: 0 Render date: 2024-04-18T21:58:00.266Z Has data issue: false hasContentIssue false

A Palliative Approach to Neurological Care: A Literature Review

Published online by Cambridge University Press:  02 December 2014

Teneille E. Gofton*
Affiliation:
Department of Clinical Neurosciences, University of Western Ontario, London Health Sciences Centre, London, Ontario, Canada
Mandar S. Jog
Affiliation:
Department of Clinical Neurosciences, University of Western Ontario, London Health Sciences Centre, London, Ontario, Canada
Valerie Schulz
Affiliation:
Department of Clinical Neurosciences, University of Western Ontario, London Health Sciences Centre, London, Ontario, Canada Department of Anesthesia, University of Western Ontario, London Health Sciences Centre, London, Ontario, Canada
*
University of Western Ontario, London Health Sciences Centre, 339 Windemere Road, London, Ontario, N6A 5A5, Canada
Rights & Permissions [Opens in a new window]

Abstract

Core share and HTML view are not available for this content. However, as you have access to this content, a full PDF is available via the ‘Save PDF’ action button.

This review assesses the current opinion towards early palliative care in neurology and discusses the existing evidence base. A comprehensive literature search resulted in 714 publications with 53 being directly relevant to the scope of this review. The current literature reflects primarily expert opinion and describes a growing interest in the early introduction of palliative principles into neurological care. Early initiation of palliative interventions has the potential to improve quality of life, enhance symptom management and assist in advance care planning. Further data is required to determine whether this shift in philosophy has a positive impact on patient care.

Type
Review Article
Copyright
Copyright © The Canadian Journal of Neurological 2009

References

1. Kristjanson, LJ, Toye, C, Dawson, S. New dimensions in palliative care: a palliative approach to neurodegenerative diseases and final illness in older people. Med J Aust. 2003;179 Suppl 6: S413.Google Scholar
2. Gruenewald, DA, Higginson, IJ, Vivat, B, Edmonds, P, Burman, RE. Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review. Mult Scler. 2004;10(6):690704.Google Scholar
3. Jenkinson, C, Fitzpatrick, R. Reduced item set for the amyotrophic lateral sclerosis assessment questionnaire: development and validation of the ALSAQ-5. J Neurol Neurosurg Psychiatry. 2001;70(1):703.Google Scholar
5. Borasio, GD, Voltz, R. [Patient consultation and palliative care in neurology, e.g. in amyotrophic lateral sclerosis]. Internist (Berl). 2000;41(7):62732.Google Scholar
6. Kristjanson, LJ. Expanding the boundaries of palliative care: an Australian perspective. J Palliat Care. 2005;21(3):1902.Google Scholar
7. Ahronheim, JC, Morrison, RS, Morris, J, Baskin, S, Meier, DE. Palliative care in advanced dementia: a randomized controlled trial and descriptive analysis. J Palliat Med. 2000;3(3):26573.Google Scholar
8. Evers, MM, Purohit, D, Perl, D, Khan, K, Marin, DB. Palliative and aggressive end-of-life care for patients with dementia. Psychiatr Serv. 2002;53(5):60913.Google Scholar
9. Aminoff, BZ, Adunsky, A. Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Care. 2005;22(5):3448.Google Scholar
10. Aminoff, BZ, Adunsky, A. Their last 6 months: suffering and survival of end-stage dementia patients. Age Ageing. 2006;35(6):597601.Google Scholar
11. Rozzini, R, Sabatini, T, Ranhoff, A, Trabucchi, M. Do we really need palliative care for severe dementia patients? Age Ageing. 2007;36(5):5847.Google Scholar
12. Kristjanson, LJ, Aoun, SM, Oldham, L. Palliative care and support for people with neurodegenerative conditions and their carers. Int J Palliat Nurs. 2006;12(8):36877.Google Scholar
13. Kumpfel, T, Hoffmann, LA, Pollmann, W, Rieckmann, P, Zettl, UK, Kuhnbach, R, et al. Palliative care in patients with severe multiple sclerosis: two case reports and a survey among German MS neurologists. Palliat Med. 2007;21(2):10914.Google Scholar
14. Turner-Stokes, L, Sykes, N, Silber, E, Khatri, A, Sutton, L, Young, E. From diagnosis to death: exploring the interface between neurology, rehabilitation and palliative care in managing people with long-term neurological conditions. Clin Med. 2007;7(2):12936.Google Scholar
15. Parker, D, Maddocks, I, Stern, LM. The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy. J Paediatr Child Health. 1999;35(3):24550.Google Scholar
16. Addington-Hall, J, Lay, M, Altmann, D, McCarthy, M. Symptom control, communication with health professionals, and hospital care of stroke patients in the last year of life as reported by surviving family, friends, and officials. Stroke. 1995;26(12):22428.Google Scholar
17. Wollin, JA, Yates, PM, Kristjanson, LJ. Supportive and palliative care needs identified by multiple sclerosis patients and their families. Int J Palliat Nurs. 2006;12(1):206.CrossRefGoogle ScholarPubMed
18. Dawson, S, Kristjanson, LJ. Mapping the journey: family carers’ perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease. J Palliat Care. 2003;19(1):3642.Google Scholar
19. Hudson, PL, Toye, C, Kristjanson, LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med. 2006;20(2):8794.Google Scholar
20. Mitchell, SL, Kiely, DK, Miller, SC, Connor, SR, Spence, C, Teno, JM. Hospice care for patients with dementia. J Pain Symptom Manage. 2007;34(1):716.Google Scholar
21. Neatherlin, JS, Fox, S. End-of-Life care concepts in Journal of Neuroscience Nursing. J Neurosci Nurs. 2006;38(5):3428, 353.Google Scholar
22. Jack, C, Jones, L, Jack, BA, Gambles, M, Murphy, D, Ellershaw, JE. Towards a good death: the impact of the care of the dying pathway in an acute stroke unit. Age Ageing. 2004;33(6):6256.Google Scholar
23. Sampson, EL, Ritchie, CW, Lai, R, Raven, PW, Blanchard, MR. A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr. 2005;17(1):3140.Google Scholar
24. Chang, E, Hancock, K, Harrison, K, Daly, J, Johnson, A, Easterbrook, S, et al. Palliative care for end-stage dementia: a discussion of the implications for education of health care professionals. Nurse Educ Today. 2005;25(4):32632.Google Scholar
25. Stevens, T, Payne, SA, Burton, C, Addington-Hall, J, Jones, A. Palliative care in stroke: a critical review of the literature. Palliat Med. 2007;21(4):32331.Google Scholar
26. Saleem, T, Leigh, PN, Higginson, IJ. Symptom prevalence among people affected by advanced and progressive neurological conditions-a systematic review. J Palliat Care. 2007;23(4):2919.Google Scholar
27. Borasio, GD, Voltz, R. Palliative care in amyotrophic lateral sclerosis. J Neurol. 1997;244 Suppl 4:S117.Google Scholar
28. Luchins, DJ, Hanrahan, P, Murphy, K. Criteria for enrolling dementia patients in hospice. J Am Geriatr Soc. 1997;45(9):10549.Google Scholar
29. Voltz, R, Borasio, GD. Palliative therapy in the terminal stage of neurological disease. J Neurol. 1997;244 Suppl 4:S210.Google Scholar
30. Liao, S, Arnold, RM. Attitudinal differences in neurodegenerative disorders. J Palliat Med. 2007;10(2):4302.Google Scholar
31. Harris, D. Forget me not: palliative care for people with dementia. Postgrad Med J. 2007;83(980):3626.Google Scholar
32. Sachs, GA, Shega, JW, Cox-Hayley, D. Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med. 2004;19(10):105763.Google Scholar
33. Foley, KM, Carver, AC. Palliative care in neurology. Neurol Clin. 2001;19(4):78999.Google Scholar
34. Kim, KY, Yeaman, PA, Keene, RL. End-of-life care for persons with Alzheimer’s disease. Psychiatr Serv. 2005;56(2):13941.Google Scholar
35. Small, N. Living well until you die: quality of care and quality of life in palliative and dementia care. Ann N Y Acad Sci. 2007;1114:194203.Google Scholar
36. Travers, E, Jones, K, Nichol, J. Palliative care provision in Huntington’s disease. Int J Palliat Nurs. 2007;13(3):12530.Google Scholar
37. Bunting-Perry, LK. Palliative care in Parkinson’s disease: implications for neuroscience nursing. J Neurosci Nurs. 2006;38(2):10613.Google Scholar
38. Wolf-Klein, G, Pekmezaris, R, Chin, L, Weiner, J. Conceptualizing Alzheimer’s disease as a terminal medical illness. Am J Hosp Palliat Care. 2007;24(1):7782.Google Scholar
39. McCarthy, M, Addington-Hall, J, Altmann, D. The experience of dying with dementia: a retrospective study. Int J Geriatr Psychiatry. 1997;12(3):4049.Google Scholar
40. Weidner, NJ. Developing an interdisciplinary palliative care plan for the patient with muscular dystrophy. Pediatr Ann. 2005;34(7):54652.Google Scholar
41. Owens, D, Flom, J. Integrating palliative and neurological critical care. AACN Clin Issues. 2005;16(4):54250.Google Scholar
42. Hurley, AC, Volicer, L, Blasi, ZV. End-of-life care for patients with advanced dementia. JAMA. 2000;284(19):244950.Google Scholar
43. Borasio, GD, Voltz, R. Palliative care in neurology. J Palliat Care. 2005;21(3):1889.Google Scholar
44. Graham, RJ, Robinson, WM. Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr. 2005;26(5):3615.Google Scholar
45. Shega, JW, Levin, A, Hougham, GW, Cox-Hayley, D, Luchins, D, Hanrahan, P, et al. Palliative Excellence in Alzheimer Care Efforts (PEACE): a program description. J Palliat Med. 2003;6(2):31520.Google Scholar
46. Defanti, CA. Study Group of Bioethics and Palliative Care in Neurology: program document. Neurol Sci. 2000;21(5):26171.Google Scholar
47. Taillibert, S, Laigle-Donadey, F, Sanson, M. Palliative care in patients with primary brain tumors. Curr Opin Oncol. 2004;16(6):58792.Google Scholar
48. von Gunten, CF, Twaddle, ML. Terminal care for noncancer patients. Clin Geriatr Med. 1996 May;12(2):34958.Google Scholar
49. Ben-Zacharia, AB, Lublin, FD. Palliative care in patients with multiple sclerosis. Neurol Clin. 2001 Nov;19(4):80127.CrossRefGoogle Scholar
50. Volpe, BT. Palliative treatment for stroke. Neurol Clin. 2001 Nov;19(4):90320.Google Scholar
51. Moskowitz, CB, Marder, K. Palliative care for people with late-stage Huntington’s disease. Neurol Clin. 2001 Nov;19(4):84965.Google Scholar
52. Burgess, L. Addressing the palliative care needs of people with dementia. Nurs Times. 2004 May 11-17;100(19):369.Google Scholar
53. Thomas, S, MacMahon, D. Parkinson’s disease, palliative care and older people: Part 1. Nurs Older People. 2004 Mar;16(1):226.Google Scholar
54. Kristjanson, LJ, Walton, J, Toye, C. End-of-life challenges in residential aged care facilities: a case for a palliative approach to care. Int J Palliat Nurs. 2005 Mar;11(3):1279.Google Scholar
55. Roger, KS. A literature review of palliative care, end of life, and dementia. Palliat Support Care. 2006 Sep;4(3):295303.Google Scholar
56. Peterson, K. Finding the balance. Neuro Oncol. 2001 Jan;3(1):556.Google Scholar
57. Arbour, R, March, K. Neurologic Critical Care: One Focus, Many Contributions. AACN Clinical Issues. 2005;16(4):41920.Google Scholar
58. Hertogh, CM. Advance care planning and the relevance of a palliative care approach in dementia. Age Ageing. 2006 Nov;35(6):5535.Google Scholar