Everlasting dependency A study of aging persons with profound intellectual and multiple disabilities and their families

The life expectancy of persons with profound intellectual and multiple disabilities (PIMD) is increasing, which raises practical, social, and ethical questions, as their aging may affect their care, support, and quality of life (QoL).
We conducted a literature review and several interview studies to explore how the aging of persons with PIMD affects their care, their QoL and that of their families, and the way medical decisions related to life and death are being made on their behalf.
We found that parents have concerns about being outlived by their child with PIMD. They feared that the roles they had always performed in their child’s life would not be taken over by others, when they would pass away prior to their child, and expected that this would diminish their child’s QoL drastically. While siblings felt able and responsible to take on a role in the care for their sister or brother with PIMD, parents were hesitant to place the burden of responsibility on their children without disabilities. In relation to medical decisions related to life and death, we describe how some parents reported that physician-assisted death may be in the interest their aging child with PIMD, as it may shorten or reduce suffering during (the last phase of) life or the process of dying.
We have designed a structured group conversation to facilitate more explicit communication between family members and care professionals, and offer practical suggestions to improve the care and support for aging persons with PIMD and their families.