Changing Structures and Processes to Support Family Caregivers of Seriously Ill Patients

Although family caregivers provide a significant portion of health and support services to adults with serious illness, they are often marginalized by existing healthcare systems and procedures. We examine the role of caregivers in existing systems of care, identify needed changes in structures and processes, and describe how these changes might be monitored and assessed and who should be accountable for implementing them. Based on a broad assessment of the caregiving literature, the recent National Academy of Sciences Report on family caregiving, and descriptive data from two national surveys, we describe structural and process barriers that limit caregivers' ability to provide effective care. To describe the unique challenges and impacts of caring for seriously ill patients, we report data from a nationally representative sample of older adults and their caregivers (National Health and Aging Trends Study [NHATS]; National Study of Caregiving [NSOC]) to identify the prevalence and impact on family caregivers of seriously ill patients who have high needs for support and are high cost to the healthcare system. Standardized measures of patient status and caregiver roles and impacts are used. Multiple structural and process barriers limit the ability of caregivers to provide effective care. These issues are exacerbated for the more than 13 million caregivers who provide care and support to 9 million seriously ill older adults. Fundamental changes are needed in the way we identify, assess, and support caregivers. Educational and workforce development reforms are needed to enhance the competencies of healthcare and long-term service providers to effectively engage caregivers.