Understanding the Role: Promoting Agency and Informed Decision-Making in Family Caregiving

Family caregivers play a crucial role in supporting individuals with chronic and life-limiting illnesses, disabilities, age-related conditions, and mental health challenges. Yet taking on this role is often made without deliberation or consent. With over 63 million family caregivers in the United States, there is little discussion of how to engage current and future caregivers in a structured, informed decision-making process about the role and related responsibilities. While informed consent is a foundational principle in medicine designed to foster individual patient autonomy, it is seldom applied to caregiving decisions, leaving many unprepared for the role. Healthcare professionals are in a unique position to address this issue. This paper advocates for a shift toward informed decision-making in family caregiving, ensuring individuals can make choices that are informed and voluntary. This approach will lead to better-informed family caregivers and a more ethically focused healthcare system.