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Serious Illness

Americans with serious illness, their families, and caregivers, face significant challenges in the U.S. health care system. They have health 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. Many have trouble performing everyday tasks such as bathing, dressing, and preparing meals, and may be at risk for falls. Individuals with serious illness may live for many years with a health condition. 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.

Today, patients with serious illness have considerable difficulty navigating Medicare’s payment and delivery system. Providers, patients, and their caregivers must cobble together a combination of services covered by Medicare and Medicaid, supplemental services provided by public and private social-services agencies, as well as personal care from paid and unpaid caregivers. Too often services are based on what is reimbursed under Medicare, rather than what patients want and need to remain in their homes. This often leads to care in institutional settings such as hospitals and skilled nursing facilities at a much higher cost.


Improving Care for Patients with Serious Illness

A two-part report series that calls for new federal policy proposals that could improve care for individuals and families who are coping with serious illness. Part one focuses on changes to Medicare payment and delivery models as well as recommendations to improve access to patient care through telehealth. Part two offers an analysis and recommendations to improve support for family caregivers and create a more sustainable and viable direct workforce.

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Read Part I

Read Part II