Caring for People With Intellectual Disabilities and Life-Limiting Illness: Merging Person-Centered Planning and Patient-Centered, Family-Focused Care

Abstract

The number of older people with intellectual disabilities (IDs) is increasing in parallel to the lengthening life expectancy of the overall population. Little is known about the needs of older people with IDs who are at life's end. Service providers who offer direct care to people with IDs have begun to develop partnerships with hospice and palliative care specialists to provide focused care that is more specialized for their clients or residents who are approaching the end of life. However, community-based programs utilize different philosophies of care that focus on the daily management of people with IDs compared to programs that focus on care at the end of life. Merging these two approaches to care in community-based residences or community-based programs for people with IDs brings challenges for both types of programs. This article compares person-centered planning and patient-focused, family-centered care and proposes means for merging the two seemingly disparate approaches to care.

KEYWORDS:

• family-centered care
• hospice and palliative care specialists
• intellectual disability
• life-limiting illness
• patient-focused
• person-centered planning
• philosophy of care