Huntington's Disease Centre, UCL Queen Square Institute of Neurology, University College London, London, UK.
The National Hospital for Neurology and Neurosurgery (NHNN), London, UK.
J Huntingtons Dis. 2023;12(1):77-82. doi: 10.3233/JHD-220559.
Advance care planning (ACP) is a useful tool that benefits adult patients, care providers, and surrogate decision makers, through providing opportunities for patients to consider, express, and formalize their beliefs, preferences, and wishes pertaining to decisions regarding future medical care at a time when they retain decision-making capacity. Early and timely consideration of ACP discussions is paramount in Huntington's disease (HD) given the potential challenges in ascertaining decision-making capacity in the advanced stages of the disease. ACP helps to empower and extend patient autonomy, providing clinicians and surrogate decision makers with reassurance that management is consistent with a patient's expressed wishes. Regular follow up is vital to establish consistency of decisions and wishes. We outline the framework of the dedicated ACP clinic integrated within our HD service to highlight the importance of a patient-centred and tailored care plan that fulfils the patient's expressed goals, preferences, and values.
预先医疗指示计划（ACP）是一种非常有用的工具，它使成年患者、医护人员和代理人决策者受益，为患者提供了在保持决策能力的情况下考虑、表达和正式确定他们对未来医疗决策的信念、偏好和愿望的机会。考虑到在亨廷顿病（HD）的晚期确定决策能力的潜在挑战，早期和及时考虑 ACP 讨论至关重要。ACP 有助于增强和扩大患者的自主权，让临床医生和代理人决策者放心，管理符合患者表达的意愿。定期随访对于确保决策和意愿的一致性至关重要。我们概述了我们的 HD 服务中整合的专门 ACP 诊所的框架，以强调以患者为中心和量身定制的护理计划的重要性，该计划满足患者表达的目标、偏好和价值观。
