Support for Decision-Making of Patients with Neuromuscular Diseases : A Literature Review

Abstract

  Many neuromuscular diseases are incurable, progressive and fatal. Physicians and caregivers face the daily challenge of how to respect patients’ wishes and promote their best interests. We conducted a literature search using the keywords “neuromuscular diseases” and “decision-making” in the literature published in the ICHUSHI Web (NPO Japan Medical Abstracts Society) between 1999 and 2023. From these 47 references, we extracted the parts describing “what is needed for decision support” and categorized them according to similarities in content. The categories were : “accurate information at the right time,” “communication that respects patient autonomy,” “support for expression of intent,” “support for medical staff,” “uninterrupted support,” “support for caregivers” and “development of a support system for medical care”. It was suggested that accurate information should be provided early and that the entire multidisciplinary team should provide ongoing support.