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Holistic Care: Psychosocial and Spiritual Aspects

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End of Life Care in Neurological Disease

Abstract

Recognizing the individual behind their disease, and “hearing their story,” is the key to helping people with advanced neurological disease. Good neurological care will always require more than physical examination and inquiring about physical symptoms.

Getting to know the individual and what is important to them is essential. It also requires sensitivity and an ability to work in an equal two-way relationship. It can be a normal part of the everyday professional relationship for those in the clinical professions, but elevated professionalism with an uneven power dynamic has no part in this. Recognizing the individual’s spirituality in the widest sense, and going some way to meet those needs, may be a challenge which many in the caring professions are already doing on a daily basis. A neurological illness which may affect the ability to communicate and to think rationally can easily have a deleterious effect on relationships and on sexuality. There are, however, some simple principles which can be used to help couples living with a neurological disease, particularly in the realms of sexuality.

Advanced neurological disease will impact on and often hurt those around the person with the illness, and support for partners and family should be an integral part of overall care. Expert help with financial, housing, and practical support will be required increasingly as the illness progresses. There may be many obstacles to providing care in these diseases, particularly in the more advanced phases, but there are still important and powerful ways to help these people and those who are important to them, requiring time, patience, and drawing on personal skills and attitudes.

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References

  1. Kritjanson 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:S41–3.

    Google Scholar 

  2. Anderson PM, Borasio GD, Dengler R, et al. EFNS task force on management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. Eur J Neurol. 2005;12:921–8.

    Article  Google Scholar 

  3. Sackett B, Sakel M. A patient’s journey. Motor neurone disease. BMJ. 2011;342:1025–7.

    Article  Google Scholar 

  4. National End of Life Care Programme. End of life care in long term neurological conditions – a framework for implementation. 2010. http://www.endoflifecareforadults.nhs.uk/assets/downloads/neurology_report___final___20101108_1.pdf. Accessed 17.4.12.

  5. Amato MP, Zipoli V, Portaccio E. Multiple sclerosis-related cognitive changes: a review of cross-sectional and longitudinal studies. J Neurol Sci. 2006;245:41–6.

    Article  PubMed  Google Scholar 

  6. Kujala P, Portin R, Ruutiainen J. The progress of cognitive decline in multiple sclerosis. A controlled 3-year follow-up. Brain. 1997;120:289–97.

    Article  PubMed  Google Scholar 

  7. Patti F, Amato MP, Trojano M, et al. Cognitive impairment and its relationship with disease measures in mildly disabled patients with relapsing-remitting multiple sclerosis: baseline results from the Cognitive Impairment in Multiple Sclerosis (COGIMUS) study. Mult Scler. 2009;15:779–88.

    Article  PubMed  CAS  Google Scholar 

  8. Rao SM, Leo GJ, Bernardin L, Unverzagt F. Cognitive dysfunction in multiple sclerosis. I. Frequency, patterns and prediction. Neurology. 1991;41:685–91.

    Article  PubMed  CAS  Google Scholar 

  9. Amato MP, Ponziani G, Siracusa G, Sorbi S. Cognitive dysfunction in early-onset multiple sclerosis: a reappraisal after 10 years. Arch Neurol. 2001;58:1602–6.

    Article  PubMed  CAS  Google Scholar 

  10. Emre M, Aarsland D, Brown R, et al. Clinical diagnostic criteria for dementia associated with Parkinson’s disease. Mov Disord. 2007;22:1689–707.

    Article  PubMed  Google Scholar 

  11. Dubois B, Burn D, Goetz C, et al. Diagnostic procedures for Parkinson’s disease dementia: recommendations from the movement disorder society task force. Mov Disord. 2007;22:2314–24.

    Article  PubMed  Google Scholar 

  12. Emre M, Aarsland D, Albanese A, et al. Rivastigmine for dementia associated with Parkinson’s disease. N Engl J Med. 2004;351:2509–18.

    Article  PubMed  CAS  Google Scholar 

  13. Ringholz GM, Appel SH, Bradshaw M, et al. Prevalence and patterns of cognitive impairment in sporadic ALS. Neurology. 2005;65:586–90.

    Article  PubMed  CAS  Google Scholar 

  14. Lomen-Hoerth C, Murphy J. The neuropsychology of amyotrophic lateral sclerosis. In: Brown RH, Swash M, Pasinelli P, editors. Amyotrophic lateral sclerosis. 2nd ed. Abingdon: Informa UK; 2006.

    Google Scholar 

  15. Gibbons ZC, Richardson A, Neary D, et al. Behaviour in amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2008;9:67–74.

    Article  PubMed  Google Scholar 

  16. Lomen-Hoerth C. Characterisation of amyotrophic lateral sclerosis and fronto- temporal dementia. Dement Geriatr Cogn Disord. 2004;17:337–41.

    Article  PubMed  Google Scholar 

  17. Lillo P, Hodges JR. Frontotemporal dementia and motor neurone disease: overlapping clinic-pathological disorders. J Clin Neurosci. 2009;16(9):1131–5.

    Article  PubMed  Google Scholar 

  18. Litvan I. Cognitive disturbances in progressive supranuclear palsy. J Neural Transm. 1994;42:69–78.

    Article  CAS  Google Scholar 

  19. All Party Parliamentary Group on Motor Neurone Disease. Inquiry into access to specialist palliative care for people with motor neurone disease. 2011.

    Google Scholar 

  20. Live Every Day [DVD] Northampton. MND Association. 2006. http://mndassociation.org/publicationslist. Accessed 15 Aug 2011.

  21. National End of Life Care Programme. Supporting people to live and die well: a framework for social care at the end of life. 2010.

    Google Scholar 

  22. Department of Health. NHS End of Life Care Strategy. London: Department of Health; 2008.

    Google Scholar 

  23. Royal College of Nursing. Route to success: the key contribution of nursing to end of life. 2011.

    Google Scholar 

  24. Mustafa N, Walsh E, Bryant V. The effect of non invasive ventilation on ALS patients and their caregivers. Neurology. 2006;66:1211–7.

    Article  Google Scholar 

  25. Gallagher D, Monroe B. Psychosocial care in palliative care. In: Oliver D, Borasio GD, Walsh D, editors. Amyotrophic lateral sclerosis. Oxford: Oxford University Press; 2006.

    Google Scholar 

  26. Department of Health. Carers at the heart of the twenty first century; families and communities, a caring system on your side, a life of your own. London: Department of Health; 2008.

    Google Scholar 

  27. When someone close has MND – a workbook for children aged four to ten. Northampton: MND Association; 2009.

    Google Scholar 

  28. Stokes JA. Then, now and always. Cheltenham: Winston’s Wish; 2004.

    Google Scholar 

  29. Jaramillo DM. Julie’s bath. Nursing. 2004;34:61.

    PubMed  Google Scholar 

  30. Lemieux L. Sexuality in palliative care: patient perspectives. Palliat Med. 2004;18:630–7.

    Article  PubMed  Google Scholar 

  31. Spence S. Psychosexual therapy: a cognitive behavioural approach. London: Chapman & Hall; 1991. p. 43.

    Google Scholar 

  32. Annon JS. The behavioural treatment of sexual problems: brief therapy. New York: Harper & Row; 1976.

    Google Scholar 

  33. Chandler BJ. Sex and relationships in neurological disability. In: RJ G, editor. Handbook of neurological rehabilitation. Hove: Psychology Press; 2003. p. 307–8.

    Google Scholar 

  34. Wells P. No sex please, I’m dying. A common myth explored. Eur J Polit Res. 2002;9(3):119–22.

    Google Scholar 

  35. Lezac M. Living with the characterologically altered brain injured patient. J Clin Psychiatry. 1978;39:592–9.

    Google Scholar 

  36. Wood RL, Liossi C, Wood L. The impact of head injury neurobehavioural sequelae on personal relationships: preliminary findings. Brain Inj. 2005;19:845–51.

    Article  PubMed  CAS  Google Scholar 

  37. Wood R, Williams C. Inability to empathize following traumatic brain injury. J Int Neuropsychol Soc. 2008;14:289–96.

    Article  PubMed  Google Scholar 

  38. Ward-Abel N. Sexuality and MS: a guide for women. Hertfordshire: MS Trust; 2007.

    Google Scholar 

  39. Ponsford J, et al. Long term adjustment of families following TBI where comprehensive rehabilitation has been provided. Brain Inj. 2003;17:453–68.

    Article  PubMed  Google Scholar 

  40. Cort E. Couples in palliative care. Sex Relation Ther. 2004;19:337–54.

    Article  Google Scholar 

  41. Collicutt J. Psychology, religion and spirituality. Psychologist. 2011;24(4):250–1.

    Google Scholar 

  42. Edwards A. The understanding of spirituality and the potential role of spiritual care in end of life and palliative care: a meta-study of qualitative research. Palliat Med. 2010;24(8):753–70.

    Article  PubMed  CAS  Google Scholar 

  43. Paul C. The relentless therapeutic imperative. BMJ. 2004;329:1457–9.

    Article  PubMed  Google Scholar 

  44. Watson MS, et al. Chapter 9: Spiritual care. In: Oxford handbook of palliative care. Oxford: Oxford University Press; 2009. p. 750–751.

    Google Scholar 

  45. Mearns D, Thorne B. Person centred counselling in action. London: Sage; 1999.

    Google Scholar 

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Correspondence to Colin W. Campbell MBChB, FRCGP, FRCP .

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Campbell, C.W., Chandler, B.J., Smith, S. (2013). Holistic Care: Psychosocial and Spiritual Aspects. In: Oliver, D. (eds) End of Life Care in Neurological Disease. Springer, London. https://doi.org/10.1007/978-0-85729-682-5_5

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  • DOI: https://doi.org/10.1007/978-0-85729-682-5_5

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