Skip to main content Accessibility help

A Palliative Approach to Neurological Care: A Literature Review

  • Teneille E. Gofton (a1), Mandar S. Jog (a1) and Valerie Schulz (a1) (a2)


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.

    • Send article to Kindle

      To send this article to your Kindle, first ensure is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

      Note you can select to send to either the or variations. ‘’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

      Find out more about the Kindle Personal Document Service.

      A Palliative Approach to Neurological Care: A Literature Review
      Available formats

      Send article to Dropbox

      To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

      A Palliative Approach to Neurological Care: A Literature Review
      Available formats

      Send article to Google Drive

      To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

      A Palliative Approach to Neurological Care: A Literature Review
      Available formats


Corresponding author

University of Western Ontario, London Health Sciences Centre, 339 Windemere Road, London, Ontario, N6A 5A5, Canada


Hide All
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.
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.
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.
4. WHO Organization WH. Available from:
5. Borasio, GD, Voltz, R. [Patient consultation and palliative care in neurology, e.g. in amyotrophic lateral sclerosis]. Internist (Berl). 2000;41(7):62732.
6. Kristjanson, LJ. Expanding the boundaries of palliative care: an Australian perspective. J Palliat Care. 2005;21(3):1902.
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.
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.
9. Aminoff, BZ, Adunsky, A. Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Care. 2005;22(5):3448.
10. Aminoff, BZ, Adunsky, A. Their last 6 months: suffering and survival of end-stage dementia patients. Age Ageing. 2006;35(6):597601.
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.
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.
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.
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.
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.
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.
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.
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.
19. Hudson, PL, Toye, C, Kristjanson, LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med. 2006;20(2):8794.
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.
21. Neatherlin, JS, Fox, S. End-of-Life care concepts in Journal of Neuroscience Nursing. J Neurosci Nurs. 2006;38(5):3428, 353.
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.
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.
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.
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.
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.
27. Borasio, GD, Voltz, R. Palliative care in amyotrophic lateral sclerosis. J Neurol. 1997;244 Suppl 4:S117.
28. Luchins, DJ, Hanrahan, P, Murphy, K. Criteria for enrolling dementia patients in hospice. J Am Geriatr Soc. 1997;45(9):10549.
29. Voltz, R, Borasio, GD. Palliative therapy in the terminal stage of neurological disease. J Neurol. 1997;244 Suppl 4:S210.
30. Liao, S, Arnold, RM. Attitudinal differences in neurodegenerative disorders. J Palliat Med. 2007;10(2):4302.
31. Harris, D. Forget me not: palliative care for people with dementia. Postgrad Med J. 2007;83(980):3626.
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.
33. Foley, KM, Carver, AC. Palliative care in neurology. Neurol Clin. 2001;19(4):78999.
34. Kim, KY, Yeaman, PA, Keene, RL. End-of-life care for persons with Alzheimer’s disease. Psychiatr Serv. 2005;56(2):13941.
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.
36. Travers, E, Jones, K, Nichol, J. Palliative care provision in Huntington’s disease. Int J Palliat Nurs. 2007;13(3):12530.
37. Bunting-Perry, LK. Palliative care in Parkinson’s disease: implications for neuroscience nursing. J Neurosci Nurs. 2006;38(2):10613.
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.
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.
40. Weidner, NJ. Developing an interdisciplinary palliative care plan for the patient with muscular dystrophy. Pediatr Ann. 2005;34(7):54652.
41. Owens, D, Flom, J. Integrating palliative and neurological critical care. AACN Clin Issues. 2005;16(4):54250.
42. Hurley, AC, Volicer, L, Blasi, ZV. End-of-life care for patients with advanced dementia. JAMA. 2000;284(19):244950.
43. Borasio, GD, Voltz, R. Palliative care in neurology. J Palliat Care. 2005;21(3):1889.
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.
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.
46. Defanti, CA. Study Group of Bioethics and Palliative Care in Neurology: program document. Neurol Sci. 2000;21(5):26171.
47. Taillibert, S, Laigle-Donadey, F, Sanson, M. Palliative care in patients with primary brain tumors. Curr Opin Oncol. 2004;16(6):58792.
48. von Gunten, CF, Twaddle, ML. Terminal care for noncancer patients. Clin Geriatr Med. 1996 May;12(2):34958.
49. Ben-Zacharia, AB, Lublin, FD. Palliative care in patients with multiple sclerosis. Neurol Clin. 2001 Nov;19(4):80127.
50. Volpe, BT. Palliative treatment for stroke. Neurol Clin. 2001 Nov;19(4):90320.
51. Moskowitz, CB, Marder, K. Palliative care for people with late-stage Huntington’s disease. Neurol Clin. 2001 Nov;19(4):84965.
52. Burgess, L. Addressing the palliative care needs of people with dementia. Nurs Times. 2004 May 11-17;100(19):369.
53. Thomas, S, MacMahon, D. Parkinson’s disease, palliative care and older people: Part 1. Nurs Older People. 2004 Mar;16(1):226.
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.
55. Roger, KS. A literature review of palliative care, end of life, and dementia. Palliat Support Care. 2006 Sep;4(3):295303.
56. Peterson, K. Finding the balance. Neuro Oncol. 2001 Jan;3(1):556.
57. Arbour, R, March, K. Neurologic Critical Care: One Focus, Many Contributions. AACN Clinical Issues. 2005;16(4):41920.
58. Hertogh, CM. Advance care planning and the relevance of a palliative care approach in dementia. Age Ageing. 2006 Nov;35(6):5535.

Related content

Powered by UNSILO

A Palliative Approach to Neurological Care: A Literature Review

  • Teneille E. Gofton (a1), Mandar S. Jog (a1) and Valerie Schulz (a1) (a2)


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.