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

Institute of Clinical Neuroimmunology Klinikum Großhadern, Ludwig-Maximilians-Universität, Munich

L A Hoffmann

Institute of Clinical Neuroimmunology Klinikum Großhadern, Ludwig-Maximilians-Universität, Munich

W Pöllmann

Marianne Strauss Klinik, Kempfenhausen

P Rieckmann

Department of Neurology, University Hospital, Würzburg

U K Zettl

Department of Neurology, University Hospital, Rostock

R Kühnbach

Interdisciplinary Centre for Palliative Medicine, Munich University Hospital - Großhadern

G D Borasio

Interdisciplinary Centre for Palliative Medicine, Munich University Hospital - Großhadern

R Voltz

Institute of Clinical Neuroimmunology Klinikum Großhadern, Ludwig-Maximilians-Universität, Munich, Department of Palliative Medicine, University Hospital, Köln, raymond.voltz{at}uk-koeln.de

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.

Key Words: multiple sclerosis • palliative care • quality of life • unmet needs

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