Conceptualising Person-centered Advance Care Planning for People with Intellectual Disabilities: A Multifaceted Theoretical Approach

Abstract

ABSTRACTDue to advances in care in recent decades, adults with intellectual disabilities (ID) are living longer than ever before. This requires increased attention to issues surrounding serious illness and end-of-life care. Person-centered advance care planning has been identified as an important aspect of respecting the wishes and values of individuals. Despite this, adults with ID are largely excluded from these discussions. This paper triangulates the Bioecological Theory of Human Development, Symbolic Interactionism, and the Human Rights Perspective to explore the complexity of person-centered care for older adults with ID. Specifically highlighted will be some of the ethical concerns and environmental barriers that limit the participation of adults with ID in person-centered care. The framework outlined in this paper seeks to facilitate a more comprehensive understanding among researchers, social workers, and care systems that there is nothing inherent in people with ID that precludes them from person-centered advance care planning and end-of-life care as they age and experience serious illness. Implications for social work practice will also be discussed.