Challenges Of Measuring Quality Of Community-Based Programs For Seriously Ill Individuals And Their Families

For many individuals and their families, acknowledging and confronting a serious illness such as cancer or advanced heart failure is a sentinel life event. From a health policy perspective, many individuals confronting such illnesses are high-need, high-cost patients who are increasingly cared for by community-based programs that may have competing goals: improving quality and reducing costs. Providing care to high-need, high-cost patients tests a health care system's ability to coordinate care and adapt to highly variable disease trajectories that could result in improved health for some, sudden and unexpected death for others, and a prolonged period of functional impairment for the majority. With the rapid growth in the number of community-based programs, efforts are needed to ensure transparency and accountability for this vulnerable population. In this article we outline the challenges in measuring quality of care for seriously ill patients, offer potential solutions, and call for new research to produce quality measures that ensure accountability for the care provided to seriously ill individuals and their families.