open access

Vol 11, No 2 (2017)
Review paper
Published online: 2017-10-12
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Palliative care for people with neurological disease

David Oliver
Medycyna Paliatywna w Praktyce 2017;11(2):41-47.

open access

Vol 11, No 2 (2017)
Review articles
Published online: 2017-10-12

Abstract

Palliative care is developing for people with neurological disease. This may be integrated early in the dise­ase progression, and may have a variable input over time. The careful assessment and management of all issues — physical, psychological, social and spiritual — provides the patient and family the opportunity to maximise quality of life. This requires a multidisciplinary approach and close collaboration with other services.

Abstract

Palliative care is developing for people with neurological disease. This may be integrated early in the dise­ase progression, and may have a variable input over time. The careful assessment and management of all issues — physical, psychological, social and spiritual — provides the patient and family the opportunity to maximise quality of life. This requires a multidisciplinary approach and close collaboration with other services.

Get Citation

Keywords

neurology, palliative care, multidisciplinary care, ethical issues

About this article
Title

Palliative care for people with neurological disease

Journal

Palliative Medicine in Practice

Issue

Vol 11, No 2 (2017)

Article type

Review paper

Pages

41-47

Published online

2017-10-12

Bibliographic record

Medycyna Paliatywna w Praktyce 2017;11(2):41-47.

Keywords

neurology
palliative care
multidisciplinary care
ethical issues

Authors

David Oliver

References (37)
  1. World Health Organisation. Global burden of neurological disorders: estimates and projections in Neurological disorders – public health challenges. Switzerland, 2006.
  2. Shaw C, Quinn A, Daniel E. Amyotrophic lateral sclerosis / motor neurone disease. In: Oliver, D, Borasio, G & Johnston W. [eds]. Palliative Care in Amyotrophic Lateral Sclerosis – From Diagnosis to Bereavement. Oxford University Press, Oxford 2014.
  3. Oliver DJ, Borasio GD, Caraceni A, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol. 2016; 23(1): 30–38.
  4. World Health Organization. Palliative care 2002. www.who.int/cancer/palliative/definition/en/ (2002).
  5. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010; 363(8): 733–742.
  6. Youens D, Moorin R. The Impact of Community-Based Palliative Care on Utilization and Cost of Acute Care Hospital Services in the Last Year of Life. J Palliat Med. 2017; 20(7): 736–744.
  7. Edmonds P, Hart S, Vivat B, et al. Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service. Mult Scler. 2010; 16(5): 627–636.
  8. Higginson IJ, McCrone P, Hart SR, et al. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manage. 2009; 38(6): 816–826.
  9. Veronese S, Gallo G, Valle A, et al. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study. BMJ Support Palliat Care. 2017; 7(2): 164–172.
  10. Solari A, Giordano A, Patti F, et al. PeNSAMI Project. Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis. Mult Scler. 2017 [Epub ahead of print]: 1352458517704078.
  11. Oliver D, Watson S. Multidisciplinary Care. In . (Editor): End of Life Care in Neurological Disease. London. Springer 2012, pp. : 113–127.
  12. Aridegbe T, Kandler R, Walters SJ, et al. The natural history of motor neuron disease: assessing the impact of specialist care. Amyotroph Lateral Scler Frontotemporal Degener. 2013; 14(1): 13–19.
  13. Turner-Stokes L, Sykes N, Silber E, et al. From diagnosis to death: exploring the interface between neurology, rehabilitation and palliative care in managing people with long-term neurological conditions. Clin Med (Lond). 2007; 7(2): 129–136.
  14. Aoun SM, Breen LJ, Howting D, et al. Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better? Amyotroph Lateral Scler Frontotemporal Degener. 2016; 17(3-4): 168–178.
  15. Aoun SM, Breen LJ, Edis R, et al. Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives. J Neurol Sci. 2016; 367: 368–374.
  16. Buecken R, Galushko M, Golla H, et al. Patients feeling severely affected by multiple sclerosis: how do patients want to communicate about end-of-life issues? Patient Educ Couns. 2012; 88(2): 318–324.
  17. Jox RJ, Krebs M, Bickhardt J, et al. How strictly should advance decisions be followed? The patients' opinion. Palliat Med. 2008; 22(5): 675–676.
  18. Bourke SC, Tomlinson M, Williams TL, et al. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial. Lancet Neurol. 2006; 5(2): 140–147.
  19. Oliver D, Faull C. Non-invasive ventilation in amyotrophic lateral sclerosis/motor neuron disease. Minerva Pneumologica. 2013; 52: 27–38.
  20. Faull C, Rowe Haynes C, Oliver D. Issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study. BMJ Support Palliat Care. 2014; 4(1): 43–49.
  21. Faull C, Oliver D. Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals. BMJ Support Palliat Care. 2016; 6(2): 144–146.
  22. Lee M, Walker R, Hildreth T, et al. A Survey of Pain in Idiopathic Parkinson's Disease. J Pain Symptom Manage. 2006; 32(5): 462–469.
  23. Oliver D. The quality of care and symptom control--the effects on the terminal phase of ALS/MND. J Neurol Sci. 1996; 139 Suppl: 134–136.
  24. Higginson IJ, Hart S, Silber E, et al. Symptom prevalence and severity in people severely affected by multiple sclerosis. J Palliat Care. 2006; 22(3): 158–165.
  25. Oliver D. Opioid medication in the palliative care of motor neurone disease. Palliat Med. 1998; 12(2): 113–115.
  26. Scott A, McPhee M. Multidisciplinary care: speech and language therapy. In: Oliver D, Borasio GD, Johnston W. Palliative care in amyotrophic lateral sclerosis- from diagnosis to brereavement. 3rd edition. Oxford University Press 2014: 215–232.
  27. Smith S, Wasner M. Psychosocial care. In: Oliver D, Borasio GD, Johnston W. Palliative care in amyotrophic lateral sclerosis – from diagnosis to brereavement. 3rd edition. Oxford University Press 2014: 145–170.
  28. Lambert R. Spiritual care In: Oliver D, Borasio GD, Johnston W. Palliative care in amyotrophic lateral sclerosis- from diagnosis to brereavement. 3rd edition. Oxford University Press 2014: 171–186.
  29. Pereira SM, Fonseca AM, Carvalho AS. Burnout in palliative care: a systematic review. Nurs Ethics. 2011; 18(3): 317–326.
  30. End of life care in long term neurological conditions: a framework for implementation. National End of Life Care Programme 2010.
  31. Hussain J, Adams D, Allgar V, et al. Triggers in advanced neurological conditions: prediction and management of the terminal phase. BMJ Support Palliat Care. 2014; 4(1): 30–37.
  32. Campbell CW, Jones EJS, Merrills J. Palliative and end-of-life care in advanced Parkinson's disease and multiple sclerosis. Clin Med (Lond). 2010; 10(3): 290–292.
  33. National Institute for Health and Care Excellence. Care of dying patients in the last days of life NG31. National Institute for Health and Care Excellence 2016. www.nice.org.uk/guidance/ng31 (2016).
  34. O'Brien T, Kelly M, Saunders C. Motor neurone disease: a hospice perspective. BMJ. 1992; 304(6825): 471–473.
  35. Neudert C, Oliver D, Wasner M, et al. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248(7): 612–616.
  36. Agar M, Currow DC, Shelby-James TM, et al. Preference for place of care and place of death in palliative care: are these different questions? Palliat Med. 2008; 22(7): 787–795.
  37. O’Brannagain D. An integrated framework of early intervention palliative care in motor neurone disease as a model to progressive neurodegenerative disease. 2009, Turin.

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