Sec. 2. Findings
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Congress makes the following findings: The population of the United States is estimated to age rapidly, with the number of people over the age of 65 set to double to more than 72,000,000, or 1 in 5 Americans, over the next two decades. Americans today are living longer and healthier lives than ever before in the history of the United States yet are also facing increased incidence of multiple serious conditions as aging progresses. Americans with advanced illness face a complicated and fragmented system of care delivery that puts them at risk for repeat hospitalizations, adverse drug reactions, and conflicting medical advice that may be overwhelming to individuals and families.
The progression of advanced illness leads to the need for increasingly intensive decision support, health care services, and support from family caregivers. The complexity of care needed by individuals with advanced illness may result in uncoordinated care, adverse health outcomes, frustration, wasted time, and undue emotional burdens on individuals and their family caregivers. Numerous private sector leaders, including hospitals, health systems, home health agencies, hospice programs, long-term care providers, employers, and other entities, have put in place innovative solutions to provide more comprehensive and coordinated care for Americans living with advanced illness.
Hospice programs, as one of the longest standing Medicare care coordination benefits that offer a comprehensive set of services via an interdisciplinary team working to provide person- and family-centered care to the frailest and most vulnerable individuals in our communities, can serve as a model for advanced illness care delivery. Palliative care programs that serve patients beginning at diagnosis with advanced illness and provide care designed to reduce the symptom burden of illness can serve as a model for interdisciplinary team care planning based on the individual’s goals of care.
The Government of the United States, as the Nation’s largest purchaser of health care services, must learn from these innovators and encourage health care providers to furnish more supportive and comprehensive advanced illness care to improve the efficacy and quality of health care delivered for generations of Americans to come. Health care providers who serve individuals with advanced illness face complicated care systems and legal concerns that may result in over- or under-treatment of individuals with advanced illness.
Individuals have the well-established right to accept or reject medical treatment that is offered, as well as the well-established right to document their preferences for how treatment decisions should be made if, at some point in the future, they lose the ability to make health care decisions. Too often, individuals with advanced illness do not understand the conditions they are facing or their treatment options, and they do not receive the information or support they need to evaluate treatment options in light of their personal goals and values and to document treatment plans in a manner that allows providers and facilities to follow their plans.
Providing quality services and planning support to individuals with advanced illness will protect and preserve their dignity.