Oliver D J, Borasio G D, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R
Palliative Medicine, Wisdom Hospice, Rochester, UK.
University of Kent, Kent, UK.
Eur J Neurol. 2016 Jan;23(1):30-8. doi: 10.1111/ene.12889. Epub 2015 Oct 1.
The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families.
A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations.
Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms (Level B) and quality of life of patients and their families (Level C). The main areas in which consensus was found and recommendations could be made are in the early integration of palliative care (Level C), involvement of the wider multidisciplinary team (Level B), communication with patients and families including advance care planning (Level C), symptom management (Level B), end of life care (Level C), carer support and training (Level C), and education for all professionals involved in the care of these patients and families (Good Practice Point).
The care of patients with progressive neurological disease and their families continues to improve and develop. There is a pressing need for increased collaboration between neurology and palliative care.
欧洲姑息治疗协会特别工作组与欧洲神经科学学会（现为欧洲神经病学学会）姑息治疗科学小组合作，旨在对文献进行综述，为进行性神经疾病患者及其家属的姑息治疗和临终关怀建立基于证据的共识。
对该领域的文献检索共得到942篇文章。由两名研究人员对这些文章进行综述，以确定主要领域和子部分。在一个反复的过程中，将支持每个领域证据的论文清单初稿分发给其他作者，从而得出一致的建议。
总体而言，支持这些建议的证据有限，但越来越多的证据表明，姑息治疗和多学科护理方法确实能改善症状（B级）以及患者及其家属的生活质量（C级）。达成共识并能提出建议的主要领域包括姑息治疗的早期整合（C级）、更广泛的多学科团队的参与（B级）、与患者及其家属的沟通，包括预先护理计划（C级）、症状管理（B级）、临终关怀（C级）、护理人员支持与培训（C级），以及对所有参与这些患者及其家属护理的专业人员的教育（良好实践要点）。
进行性神经疾病患者及其家属的护理在持续改善和发展。神经病学与姑息治疗之间迫切需要加强合作。
