Palliative care in patients with severe multiple sclerosis: two case reports and a survey among German MS neurologists

Abstract

Due to its chronic and fluctuating time course, multiple sclerosis (MS), thus far, has not been regarded as a focus of palliative care. However, sometimes we are confronted with severely affected MS patients, who suffer from complex medical, physical and psychosocial problems, which are not fully covered by the current health care services.

We present two cases of severely affected MS patients we saw in our outpatient MS clinic, and who, we believe, are candidates for palliative care. The first patient, with primary chronic progressive (pcP) MS for many years (Expanded Disability Status Scale (EDSS): 8.0) presented with complex painful dysaesthesias and a depressive syndrome. He refused any treatment, and finally committed suicide with the help of a euthanasia group in Switzerland. The second patient was also severely affected by a secondary chronic progressive (scP) MS (EDSS: 9.0) and was finally admitted to our palliative care unit due to a complex pain syndrome associated with panic attacks and anxiety. She spent three weeks on the palliative care unit and her symptoms improved gradually after changing and optimising her pain medication. The patient was discharged with home care and is seen regularly on the palliative care unit.

Additionally, as a first step, a questionnaire was sent to 53 German MS specialists regarding their general view on the needs for palliative care in MS. Our two cases and the results of the questionnaire demonstrated that MS patients and their caregivers are confronted with a variety of symptoms which are difficult to treat, and are a cause of great suffering for the patients, including ataxia, depression and fatigue. The data of the questionnaire also showed that neurologists usually do not deal with end-of-life care issues in MS.

More research is needed to define the role of palliative care in MS and establish appropriate interventions to improve the quality of life in advanced stage MS patients and their relatives.

Keywords

multiple sclerosis palliative care quality of life unmet needs

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References

Krupp LB , Rizvi SA. Symptomatic therapy for under recognized manifestations of multiple sclerosis. Neurology 2002; 58 (Suppl 4): S32-S39.

Confavreux C , Aimard G , Devic M. Course and prognosis of multiple sclerosis assessed by the computerized data processing of 349 patients. Brain 1980; 103: 281-300.

Bonnum-Hansen H , Koch-Henriksen N , Stenager E. Trends in survival and cause of death in Danish patients with multiple sclerosis. Brain 2004; 127: 844-850.

Kesselring J , Beer S. Symptomatic therapy and neurorehabilitation in multiple sclerosis. Lancet Neurol 2005; 4: 643-652.

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: 690-704.

Pöllmann W , Busch C , Voltz R. Quality of life in multiple sclerosis. Measures, relevance, problems, and perspectives. Nervenarzt 2005; 76: 154-169.

Kurtzke JF. Rating neurological impairment in multiple sclerosis: an Expanded Disability Status Scale (EDSS). Neurology 1983; 33: 1444-1452.

Benedict RH , Wahlig E , Bakshi R , et al. Predicting quality of life in multiple sclerosis: accounting for physical disability, fatigue, cognition, mood disorder, personality, and behaviour change. J Neurol Sci 2005; 231: 29-34.

Pittock SJ , Mayr WT , McClelland RL , et al. Quality of life is favourable for most patients with multiple sclerosis: a population-based cohort study. Arch Neurol 2004; 61: 679-686

10.

Goldman Consensus Group . The Goldman Consensus statement on depression in multiple sclerosis. Mult Scler 2005; 11: 328-337.

11.

Stenager EN , Stenager E , Koch-Henriksen N , et al. Suicide and multiple sclerosis: an epidemiological investigation. J Neurol Neurosurg Psychiatry 1992; 55: 542-545.

12.

Fredrikson S , Cheng Q , Jiang GX , Wasserman D. Elevated suicide risk among patients with multiple sclerosis in Sweden. Neuroepidemiology 2003; 22: 146-152.

13.

van der Wal G , Onwuteaka-Philipsen BD. Cases of euthanasia and assisted suicide reported to the public prosecutor in North Holland over 10 years. BMJ 1996; 312: 612-613.

14.

Carney MT , Meier DE. Palliative care and end of life issues. Anesthesiol Clin North Am 2000; 18: 1-27.

15.

World Health Organisation . National cancer control programmes: policies and managerial guidelines, second edition. WHO 2000: 83-91.

16.

Oliver D , Borasio GD , Walsh D (eds). Palliative care in amyotrophic lateral sclerosis (Motor Neurone Disease). Oxford University Press, 2000.

17.

Feinstein A. An examination of suicidal intent in patients with multiple sclerosis. Neurology 2002; 59: 674-678.

18.

Hart S , Fonareva I , Merluzzi N , Mohr DC. Treatment for depression and its relationship to improvement in quality of life and psychological well-being in multiple sclerosis patients. Qual Life Res 2005; 14: 695-703.

19.

Pöllmann W , Feneberg W , Erasmus LP. Pain in multiple sclerosis - a still underestimated problem. The 1 year prevalence of pain syndromes, significance and quality of care of multiple sclerosis inpatients. Nervenarzt 2004; 75: 135-140.

20.

Kalia LV , O’Connor PW. Severity of chronic pain and its relationship to quality of life in multiple sclerosis. Mult Scler 2005; 11: 322-327.

21.

Berkman CS , Cavallo PF , Chesnut WC , Holland NJ. Attitudes toward physician-assisted suicide among persons with multiple sclerosis. J Palliat Med 1999; 2: 51-63.

22.

Ben-Zacharia AB , Lublin FD. Palliative care in patients with multiple sclerosis. Neurol Clin 2000; 19: 801-827.

23.

Macleod AD , Formaglio F. Demyelinating disease. In Voltz et al. (eds). Palliative care in neurology. Oxford University Press, 2004.

24.

Rothwell PM , McDowell Z , Wong CK , Dorman PJ. Doctors and patients don’t agree: cross sectional study of patients and doctors perceptions and assessments of disability in multiple sclerosis. BMJ 1997; 314: 1580-1583.