Oberstadt Moritz Caspar Franz, Esser Peter, Classen Joseph, Mehnert Anja
Department of Neurology, University Medical Center Leipzig, Leipzig, Germany.
Department of Medical Psychology and Medical Sociology, University Medical Center Leipzig, Leipzig, Germany.
Front Neurol. 2018 Apr 16;9:231. doi: 10.3389/fneur.2018.00231. eCollection 2018.
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that is inevitably fatal. To be diagnosed with a terminal illness such as ALS deeply affects one's personal existence and goes along with significant changes regarding the physical, emotional, and social domains of the patients' life. ALS patients have to face a rapidly debilitating physical decline which restrains mobility and impairs all activities of daily living. This progressive loss of autonomy may lead to a sense of hopelessness and loss of quality of life, which in turn may even result in thoughts about physician-assisted suicide. Here, we would like to propose a psychotherapeutic manualized, individual, semi-structured intervention to relieve distress and promote psychological well-being in ALS patients. This short-term intervention was originally developed for advanced cancer patients. "Managing Cancer and Living Meaningfully (CALM)" focuses on the four dimensions: (i) symptom management and communication with healthcare providers, (ii) changes in self and relations with close others, (iii) spirituality, sense of meaning and purpose and (iv) thinking of the future, hope, and mortality. We suggest to supplement the concept by two additional dimensions which take into account specific issues of ALS patients: (v) communication skills, and (vi) emotional expression and control. This therapeutic concept named "anagng urden in LS and iving eaningfully (mi-BALM)" may be a further treatment option to help improving quality of life of ALS patients.
肌萎缩侧索硬化症(ALS)是一种进行性神经退行性疾病,最终必然会导致死亡。被诊断患有ALS这样的绝症会深刻影响一个人的个人生存,并伴随着患者生活在身体、情感和社会领域的重大变化。ALS患者不得不面对身体迅速衰弱的状况,这限制了他们的行动能力,并损害了所有的日常生活活动。这种自主性的逐渐丧失可能会导致绝望感和生活质量的下降,进而甚至可能引发关于医生协助自杀的想法。在此,我们想提出一种心理治疗的手册化、个体化、半结构化干预措施,以减轻ALS患者的痛苦并促进其心理健康。这种短期干预最初是为晚期癌症患者开发的。“有意义地管理癌症与生活(CALM)”关注四个维度:(i)症状管理以及与医疗服务提供者的沟通,(ii)自我的变化以及与亲密他人的关系,(iii)精神性、意义感和目的感,(iv)对未来的思考、希望和死亡。我们建议通过另外两个维度来补充这个概念,这两个维度考虑到了ALS患者的特殊问题:(v)沟通技巧,以及(vi)情绪表达与控制。这个名为“有意义地管理ALS负担与生活(mi - BALM)”的治疗概念可能是帮助改善ALS患者生活质量的又一种治疗选择。