State Decision-Making Approaches in Seriously Ill People With Intellectual/Developmental Disability

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management Pub Date : 2025-08-13 DOI:10.1016/j.jpainsymman.2025.08.007

Matthew Castillo MD, MS , Arlen G. Gaines PhD, MSW , Caitlyn M. Moore DNP, MS, ACHPN , Cynthia X. Pan MD

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Abstract

Hospice and palliative care (HAPC) clinicians supporting individuals with intellectual and developmental disabilities (IDD) navigate complex decision-making pathways while promoting autonomy and dignity. Approximately 1%–3% of the global population lives with IDD, and many healthcare professionals feel ill-prepared to meet their unique needs, particularly in serious illness planning. Advance care planning (ACP) for this population is complicated by historical discrimination, ongoing inequities, and inconsistent legal frameworks. Supported decision-making offers a rights-based alternative to surrogate decision-making, preserving individuals' autonomy. This manuscript presents the case of Mr. A, an adult with Down syndrome, to illustrate practical ACP and supported decision-making considerations across Maryland, New York, and Pennsylvania. Each state’s legal requirements for appointing a healthcare agent (HCA), determining capacity, and avoiding guardianship are discussed. Through thoughtful ACP and supported decision-making, Hospice and palliative care (HAPC) clinicians can promote appropriate autonomy for individuals with IDD, fostering inclusive serious illness discussions and ethical practices across diverse legal landscapes.

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智力/发育障碍重症患者的国家决策方法。

临终关怀和姑息治疗（HAPC）临床医生支持智力和发育障碍（IDD）患者在促进自主和尊严的同时，引导复杂的决策路径。全球约有1-3%的人口患有缺碘症，许多医疗保健专业人员感到准备不足，无法满足他们的独特需求，特别是在重大疾病规划方面。由于历史上的歧视、持续的不平等和不一致的法律框架，对这一人群的预先护理计划（ACP）变得复杂。支持性决策为替代决策提供了一种基于权利的选择，保留了个人的自主权。本文介绍了患有唐氏综合症的成人A先生的案例，以说明马里兰州、纽约州和宾夕法尼亚州的实际ACP和支持决策考虑。每个州对指定医疗保健代理（HCA）、确定能力和避免监护的法律要求进行了讨论。通过深思熟虑的ACP和支持的决策，HAPC临床医生可以促进IDD患者的适当自主权，促进包容性的严重疾病讨论和跨越不同法律环境的道德实践。

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

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.