Kümpfel T, Hoffmann L A, Pöllmann W, Rieckmann P, Zettl U K, Kühnbach R, Borasio G D, Voltz R
Institute of Clinical Neuroimmunology Klinikum Grosshadern, Ludwig-Maximilians-Universität, Munich.
Palliat Med. 2007 Mar;21(2):109-14. doi: 10.1177/0269216306075112.
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.
由于其病程呈慢性且波动，迄今为止，多发性硬化症（MS）尚未被视为姑息治疗的重点。然而，有时我们会遇到病情严重的MS患者，他们患有复杂的医学、身体和心理社会问题，而当前的医疗服务并不能完全涵盖这些问题。我们介绍两例在我们的门诊MS诊所见到的病情严重的MS患者，我们认为他们是姑息治疗的候选对象。首例患者患有原发性慢性进展型（pcP）MS多年（扩展残疾状态量表（EDSS）：8.0），出现复杂的疼痛性感觉异常和抑郁综合征。他拒绝任何治疗，最终在瑞士一个安乐死组织的帮助下自杀。第二例患者也受到继发性慢性进展型（scP）MS的严重影响（EDSS：9.0），最终因与惊恐发作和焦虑相关的复杂疼痛综合征而入住我们的姑息治疗病房。她在姑息治疗病房住了三周，在更换和优化止痛药物后，症状逐渐改善。患者出院后接受家庭护理，并定期在姑息治疗病房接受复诊。此外，作为第一步，我们向53位德国MS专家发送了一份问卷，询问他们对MS患者姑息治疗需求的总体看法。我们的两个病例以及问卷结果表明，MS患者及其护理人员面临着各种难以治疗的症状，这些症状给患者带来了巨大痛苦，包括共济失调、抑郁和疲劳。问卷数据还显示，神经科医生通常不处理MS患者的临终关怀问题。需要更多研究来确定姑息治疗在MS中的作用，并制定适当的干预措施，以提高晚期MS患者及其亲属的生活质量。
