Ensuring Supportive Care for Patients With Advanced Illness: Public Policy and the Impact on Family Caregivers

This project assesses public policy initiatives focused on addressing challenges faced by caregivers of patients with advanced illness and recommends how one program could be enhanced to offer more comprehensive services and increase effectiveness. The project combines a retrospective analysis of online information and published, peer-reviewed data with qualitative interviews involving experts focused on addressing the needs of patients with advanced illness and health and social service professionals with the perspective of caregivers. The literature review revealed three key areas where policy-related programming could be helpful for caregivers, including the need for fundamental education when a patient is moved between health care settings or to home, long-term financial planning covering costs associated with advanced illness, and addressing caregiver psychosocial needs. The interviews garnered information regarding challenges experienced by caregivers which were aligned with the three policy areas identified through the literature review. The resulting recommendation was to progressively expand The Program of Comprehensive Assistance for Family Caregivers provided through the Veteran’s Administration, currently limited to veterans with an injury that was incurred in the line of duty on or after September 11, 2001. As such an expansion would undoubtedly be met with opposition, a multi-pronged approach was suggested, including engaging caregivers and caregiver-related organizations in a national advocacy campaign, calling upon the newly created Assisting Caregivers Today (ACT) bipartisan Congressional Caucus to champion expansion and leveraging federal funding from inefficient, uncoordinated, underfunded, marginally beneficial programs. In the meantime, the project concludes that collaboration among key players in the health care system and providers of caregiver-related services is required to limit challenges faced by caregivers. Presentation: 24 minute