Achieving a system of end-of-life care that is sensitive to and accommodates the needs of all those involved, requires attention to a range of ethical and policy issues, including personal choice, cost, and quality of care. Over the past century, several demographic and historical changes have affected the experience of death and dying in the United States. Since then, average life expectancy has risen dramatically in the United States. End-of-life care can be broadly defined as health care, including acute care and long-term care, provided to persons who: are very ill, have a prognosis that is likely to worsen, and most likely will die from their illness. Palliative care focuses on relieving suffering and reducing the severity of disease symptoms for persons with serious illness as well as improving the quality of life for patients and their families. Hospice care is a form of palliative care that delivers comfort care to those at the end of life. Cost of Care at the End of Life

Costs of care at the end of life may be paid by public payers such as Medicare or Medicaid, private insurance, out-of-pocket, or by some other source such as the Department of Veterans Affairs or charity organizations. About one-fourth of total Medicare spending is for the last year of life. This share has remained generally constant for the past 20 years. Setting of Care

The majority of Medicare end-of-life costs, defined as Medicare spending in the last two years of life, are from inpatient hospital expenditures. Geographic Variation

Findings from the same study that addressed sources for end-of-life care spending under Medicare found that there is also wide geographic variation in end-of-life care costs. According to the Wennberg Study, this geographic variation may reflect differences in practice patterns of physicians and are not necessarily due to differences in prevalence of disease among chronically ill patients. End-of-Life Care Laws and Ethics

The development of new technologies, and the associated prospect of longer, more protracted deaths, have focused some policy discussions on the topic of patients' wishes. Federal law generally defers to state law concerning health-care decision making, including end-of-life care decision making. Given the complexities in decision making surrounding medical interventions that have life-extending potential, all 50 states and the District of Columbia have passed laws to address end-of-life care issues. Due to its timing, duration, and intensity, end-of-life care presents numerous challenges and opportunities for quality measurement, assessment, and improvement. Because end-of-life care can be palliative, and not curative, assessments of quality are often based on family and patient satisfaction. Studies have documented several factors which are associated with perceptions of higher quality care by patients and families. These include expressions of patients' wishes, discussions of families' spiritual needs, documentation of a living will, and family presence at the time of death. ,
A number of initiatives are currently underway in the private and public sectors to improve the quality of care individuals receive at the end of life, and specifically the quality of palliative and hospice care. Issues for Congress

As the nation prepares for an aging population and likely increase in demand for high quality end-of-life care services among the elderly, Congress may face a decision whether to modify or expand the role of the federal government in providing support to individuals and families to assist with end-of-life care. Some of these policy issues include, but are not limited to:
developing new research and knowledge for improved practices, including federal funding for educational centers or centers of excellence focused on symptom management and end-of-life care; modifying reimbursement policy to create incentives for physician communication about end-of-life care decision making; permitting Medicare hospice beneficiaries to receive curative care in addition to hospice benefits; providing opportunities for the integration of Medicare and Medicaid services in order to coordinate care across acute and long-term care settings; examining and addressing quality of care at the end of life in various settings (e.g., hospital, nursing home, private home); developing general requirements, committee training, and accreditation for medical ethics committees; and enforcing prescription drug abuse without limiting physicians' abilities to prescribe pain killing drugs.
End-of-life care can be broadly defined as health care provided to persons who are very ill, have a prognosis that is likely to worsen, and most likely will die in the near term from their illness. End-of-life care may be in the form of acute care provided in the days or months prior to death or palliative care, which focuses on relieving the patient's suffering and reducing the severity of disease symptoms as well as improving quality of life. Hospice care is a form of palliative care that delivers comfort care to those who forgo curative treatment and have a life expectancy that can be measured in months. Achieving a health care system where the provision of end-of-life care services are sensitive to and accommodate the needs of all those involved requires attention to a range of ethical and policy issues, including personal choice, cost, and quality of care.
Over the past century, several demographic and historical changes have affected the experience of death and dying in the United States. The development of new technologies, and the associated prospect of longer, more protracted deaths, has focused some policy discussions on the topic of patients' preferences. Federal law generally defers to state law concerning health-care decision making. Given the complexities in decision making surrounding medical interventions that have life-extending potential, states have passed laws to address end-of-life care issues, such as advance directives. However, there is considerable variation among state laws.
Costs of care at the end of life may be paid by Medicare or Medicaid, private insurance, or out-of-pocket. According to CMS, about one-fourth of total Medicare spending is for the last year of life. This share has remained generally constant for the past 20 years. The majority of Medicare end-of-life costs are from inpatient hospital expenditures. Researchers have also found that there is wide geographic variation in end-of-life Medicare costs. This geographic variation may reflect differences in practice patterns of physicians and is not necessarily due to differences in prevalence of disease among chronically ill patients.
End-of-life care presents numerous challenges and opportunities for quality measurement, assessment, and improvement. Assessments of quality end-of-life care are often based on family and patient satisfaction. Factors associated with perceptions of higher quality care include expressions of patients' wishes, discussions of families' spiritual needs, documentation of a living will, and family presence at the time of death. A number of initiatives are currently underway to improve the quality of care individuals receive at the end of life, and specifically the quality of palliative and hospice care.
As the nation prepares for an aging population and likely increase in the need for high quality end-of-life care services among the elderly, Congress may face a decision whether to expand the role of the federal government in providing support to individuals and families to assist with end-of-life care. This report provides information on various aspects of end-of-life care. The report is divided into six sections that address (1) demographic and historical changes affecting death and dying in the United States; (2) the definitions of end-of-life, palliative, and hospice care; (3) costs associated with end-of-life care; (4) end-of-life care laws and ethics; (5) quality of care at the end of life; and (6) policy issues that would modify or expand the federal government's role in addressing end-of-life care. This report will be updated as warranted.