[End of life perspectives: a systematic survey of patients with amyotrophic lateral sclerosis].

IF 0.9 4区医学 Q4 CLINICAL NEUROLOGY Nervenarzt Pub Date : 2024-11-15 DOI:10.1007/s00115-024-01769-4

Clemens Eickhoff, Bettina Schöne-Seifert, Dagmar Kettemann, Eike Bormann, Torsten Grehl, Matthias Boentert, Jan C Koch, Carolina Schmitt, Bertold Schrank, Carsten Schröter, Thomas Meyer

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Abstract

Background: Amyotrophic lateral sclerosis (ALS) is a disease that still has to be primarily treated symptomatically or palliatively. It is therefore all the more important, in addition to initiating treatment, such as percutaneous endoscopic gastrostomy (PEG), noninvasive ventilation therapy (NIVT) and invasive ventilation therapy via tracheotomy (IVT), to discuss the possible termination of these measures early on.

Question: What is the importance of advance directives for those affected and where are possible deficits in therapy planning for the end of life?

Material and method: Between March 2017 and January 2019 patients with a clinically confirmed diagnosis of ALS at six treatment centers were asked to fill out a questionnaire. A total of 328 people returned the completed forms.

Results: Of the participants 72% had already made an advance directive (AD), 25% planned to fill one out and only 3% refused to do so. In composing the AD most patients (90%) had support, although 56% lacked medical counselling and only 18% had drawn up the will together with the doctor and relatives, with the majority of the rest also wanting support from a doctor. A total of 37% of all patients wanted a contact person to talk about their illness but only 40% of them had such a contact person. Of the patients 22% stated that they had considered suicide and of these only 55% stated that they had no contact person for the psychological stress caused by the illness but 31% wished to have such a person.

Discussion and conclusion: A coordinated care of ALS patients, which also takes the psychosocial aspects into account is urgently needed.

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[生命终结的观点：对肌萎缩性脊髓侧索硬化症患者的系统调查]。

背景：肌萎缩性脊髓侧索硬化症（ALS）是一种仍需以对症或姑息治疗为主的疾病。因此，除了启动治疗（如经皮内镜胃造瘘术（PEG）、无创通气疗法（NIVT）和气管切开有创通气疗法（IVT））外，尽早讨论可能终止这些措施也显得尤为重要：预先指示对受影响者的重要性是什么，生命末期治疗规划中可能存在的缺陷在哪里？2017年3月至2019年1月期间，6家治疗中心临床确诊为ALS的患者被要求填写一份调查问卷。共有 328 人交回了填好的表格：结果：72%的参与者已经做出预先指示（AD），25%的参与者计划填写预先指示，只有3%的参与者拒绝填写预先指示。大多数病人（90%）在填写预嘱时都得到了医生的支持，但有 56% 的病人缺乏医疗咨询，只有 18% 的病人是与医生和亲属一起起草的遗嘱，其余大多数病人也希望得到医生的支持。共有 37% 的病人希望有一个联系人来倾诉自己的病情，但只有 40% 的病人有这样的联系人。22%的患者表示他们曾考虑过自杀，其中只有55%的患者表示他们没有联系人来应对疾病造成的心理压力，但31%的患者希望有这样一个人：讨论和结论：迫切需要对 ALS 患者进行协调护理，同时考虑到社会心理因素。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Nervenarzt 医学-精神病学

CiteScore

2.50

自引率

18.20%

发文量

169

审稿时长

4-8 weeks

期刊介绍： Der Nervenarzt is an internationally recognized journal addressing neurologists and psychiatrists working in clinical or practical environments. Essential findings and current information from neurology, psychiatry as well as neuropathology, neurosurgery up to psychotherapy are presented. Review articles provide an overview on selected topics and offer the reader a summary of current findings from all fields of neurology and psychiatry. Freely submitted original papers allow the presentation of important clinical studies and serve the scientific exchange. Review articles under the rubric ''Continuing Medical Education'' present verified results of scientific research and their integration into daily practice.