This is the second report in a two-part series on federal policy options designed to improve care for individuals and families who are coping with serious illness. The first report, Improving Care for Patients with Serious Illness: Part One, focused on changes to Medicare payment and delivery models as well as policy recommendations designed to improve access to care through telehealth. This second report offers analysis and recommendations to improve support for family caregivers and create a more sustainable and viable direct care workforce.
Americans with serious illness, their families, and caregivers face daunting challenges in the U.S. health care system. Patients with serious illness have conditions that (1) carry a high risk of mortality, (2) limit their ability to live independently, and (3) cause them to rely heavily on caregivers to help them remain at home. These high-needs individuals may have comorbid conditions such as diabetes, chronic obstructive pulmonary disease, and heart disease and may need assistance with common, everyday activities such as bathing, dressing, and preparing meals. In addition to traditional medical services provided in a physician’s office or hospital, individuals with serious illness often require other non-medical health-related services that help them with these everyday activities. Examples of these services include transportation, care management, minor home modifications such as grab bars, and medically tailored home-delivered meals. And while those with serious illness span every age, the rapid increase in the number of Americans over age 65 with serious health conditions and functional limitations has spurred researchers and practitioners to focus on and advocate for more effective and person-centered models of payment and delivery of services under Medicare, the primary source of insurance for older Americans.
A study by Discern Health identified key characteristics of payment and care delivery models that result in the highest-quality care for those with serious illness. Key characteristics include: access to in-home services, including the use of telehealth services; care coordination services; individual care plans based on patient and caregiver needs; and interdisciplinary care teams that communicate regularly and monitor changes in a patient’s health or functional status. For patients with complex care needs, research has also shown that the provision of certain social services and supports not typically covered by health insurance can reduce hospital readmissions and emergency department visits.
Since 2014, the Bipartisan Policy Center, under the leadership of former Senate Majority Leaders Tom Daschle and Bill Frist, has issued policy recommendations to improve quality and reduce costs for the most vulnerable and most costly individuals in the U.S. health care system. As mentioned above, this report is the second in a series on serious illness that expands on this previous work. The series focuses on changes to existing reimbursement structures and traditional models of care by addressing the following issues: (1) improve quality and access for those with serious illness in Medicare, (2) improve access to telehealth services, (3) increase the availability of a well-trained direct care workforce, and (4) provide additional support to family caregivers.