Parents’ views on medical decisions related to life and death for their ageing child with profound intellectual and multiple disabilities: A qualitative study

Abstract

BACKGROUND: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However, little is known about how parents make such decisions for their ageing child. AIM: Explore parents’ views on medical decisions related to life and death for their ageing child with PIMD. METHODS: We interviewed 27 parents of persons with PIMD (≥ 15 years) and analyzed the data thematically. RESULTS: Parents who were convinced that their ageing child’s quality of life (QoL) was good, stated that their child “deserved the same treatment as any other person”. Others rejected life-prolonging treatments for their child because they believed such treatment would diminish their child’s QoL. Some of the parents who thought their child’s QoL was poor, mentioned that withholding treatment is only an option in a crisis situation and contemplated other options to shorten their child’s life. CONCLUSIONS: Parents feel equipped to take on a central role in medical decisions related to life and death for their ageing child with PIMD, and desire understanding from medical professionals for their views on their child’s interests, which sometimes includes physician-assisted death.