Navigating End-of-Life Needs for a Person With Intellectual Disabilities and Their Caregivers

Abstract

People with intellectual disabilities (IDs) are living longer, with many experiencing significant barriers to accessing palliative care and hospice services. Families, caregivers, and direct support professionals comprise essential portions of the community of support often surrounding a person with IDs. For a variety of reasons, including clinician bias and communication difficulties, many people with IDs are excluded from critical conversations regarding their health and life. This article uses a blended case study to explore the complexities and unique considerations in ensuring ethical and practical end-of-life care for people with IDs. Decision-making must center on the person with ID and include them in ways they can understand, thus facilitating their right to autonomy. A collaborative approach to care with shared expertise between caregivers and hospice and palliative care services is key to providing effective, patient-centered care at the end of life. There are tremendous areas of opportunity to improve end-of-life care for this population by partnering with people with IDs, their families, and caregivers.