O'Connell Colleen, Kavanaugh Melinda S, Cummings Cathy, Genge Angela
Stan Cassidy Centre for Rehabilitation, Fredericton, Canada.
Physical Medicine & Rehabilitation, Dalhousie University, Faculty of Medicine, Fredericton, Canada.
Amyotroph Lateral Scler Frontotemporal Degener. 2025 Feb;26(1-2):5-14. doi: 10.1080/21678421.2024.2397517. Epub 2024 Sep 11.
In amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), it is necessary to communicate difficult news during the initial diagnosis and throughout the disease trajectory as the condition progresses. However, delivering difficult news to people with ALS/MND is an emotionally demanding task for healthcare and allied health professionals-one for which many feel ill-prepared because of limited training in this area. Ineffective communication of difficult news damages the patient-provider relationship and negatively impacts patient quality of life (QoL). To address this issue, we developed the A-L S-PIKES protocol based on available literature and our extensive clinical experience. It provides easy-to-follow, stepwise guidelines to effectively deliver difficult news to people with ALS/MND (PALS) that includes: dvance Preparation (preparing for the discussion logistically and emotionally); ocation & etting (creating a comfortable setting that fosters rapport); atient's Perceptions (assessing PALS' understanding and perception of their condition); nvitation (seeking PALS' permission to share information); nowledge (sharing information in a clear, understandable manner); motion/mpathy (addressing emotions with empathy and providing emotional support); and trategy & ummary (summarizing the discussion and collaboratively developing a plan of action). A-L S-PIKES provides practical guidelines on how to prepare for and conduct these challenging conversations. It emphasizes effective communication tailored to the individual needs of PALS and their families, empathy, sensitivity, and support for PALS' emotional well-being and autonomy. The aim of A-L S-PIKES is to both enhance skills and confidence in delivering difficult news and to improve the QoL of PALS and their families. Future studies should systematically evaluate the feasibility and effectiveness of A-L S-PIKES to establish its utility in clinical practice.
在肌萎缩侧索硬化症/运动神经元病（ALS/MND）中，随着病情进展，在初始诊断期间及整个疾病过程中传达坏消息是必要的。然而，对于医疗保健和相关健康专业人员而言，向ALS/MND患者传达坏消息是一项情感上要求很高的任务——由于在该领域的培训有限，许多人觉得自己对此准备不足。坏消息传达不当会损害医患关系，并对患者的生活质量（QoL）产生负面影响。为解决这一问题，我们基于现有文献和丰富的临床经验制定了ALS - PIKES协议。它提供了易于遵循的逐步指导方针，以有效地向ALS/MND患者（PALS）传达坏消息，包括：提前准备（在后勤和情感上为讨论做准备）；地点与环境（营造一个有助于建立融洽关系的舒适环境）；患者认知（评估PALS对自身病情的理解和认知）；邀请（征求PALS分享信息的许可）；知识（以清晰、易懂的方式分享信息）；情感/同理心（以同理心处理情绪并提供情感支持）；策略与总结（总结讨论内容并共同制定行动计划）。ALS - PIKES提供了关于如何为这些具有挑战性的对话做准备和进行对话的实用指南。它强调根据PALS及其家人的个体需求进行有效沟通、同理心、敏感性以及对PALS情感健康和自主权的支持。ALS - PIKES的目的是提高传达坏消息的技能和信心，并改善PALS及其家人的生活质量。未来的研究应系统评估ALS - PIKES的可行性和有效性，以确定其在临床实践中的效用。
