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.

Analysis of nociception, sex and peripheral nerve innervation in the TMEV animal model of multiple sclerosis

“…Pain is an important and frequent symptom accompanying multiple sclerosis (Svendsen et al, 2005;Kumpfel et al, 2007). MS pain develops in 50-80% of MS patients, with 30% of those patients describing pain as their worst symptom (Beard et al, 2003).…”

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

“…[11][12][13][14] Psychological support, occupational therapy, speech therapy, and palliative care for this group were all perceived as seriously deficient. 15 It remains difficult to conduct adequate needs assessment, as there is still no single, unambiguous, clear definition for the term 'severe MS.' 16 The most commonly used instrument to evaluate the severity of affectedness, the EDSS (Expanded Disease Status Scale), 17 assesses patients' functional status, referring primarily to restriction of movement, not other symptoms relevant for the severity of MS (e.g., fatigue, depression, pain, visual dysfunction). 18,19 Patients' own subjective definitions of being severely affected fit with the palliative approach, where intervention is guided by the subjective assessment of suffering.…”

Palliative Care for Severely Affected Patients with Multiple Sclerosis: When and Why? Results of a Delphi Survey of Health Care Professionals

“…More than half of cases of depression among patients with MS go undiagnosed. 6 Our research showed that patients with MS are interested in communicating about issues concerning death and dying, 7,8 especially since the burden of the disease can sometimes produce suicidal ideation 9 as reflected in alarming rates of euthanasia and assisted suicide for patients with MS. 10,11 MS may be complicated by cognitive impairment, swallowing, or speech problems. Managing MS requires assistance from a wide range of health care specialists throughout the patient's life.…”