Americans express strong views when asked about the care that they want to receive when they are dying. In general, they prefer to die at home and to remain in charge of decisions about their care. However, evidence suggests these wishes are not likely to be fulfilled.

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, a new report from the Institute of Medicine, examines the delivery of health care, social services, and other support to individuals of all ages with a serious illness or medical condition who may be approaching death, as well as their families. In addition, the report assesses advance care planning; health care costs, financing, and reimbursements; and communication among patients, family members, and providers.

The report offers recommendations for changes in policy, financing mechanisms and payment practices, workforce developments, research, and clinical and supportive care. The recommendations presented focus specifically on those with “a serious illness or medical condition who may be approaching death.”

The committee overseeing this report, which includes Judy Peres, Senior Policy Analyst at Altarum Institute’s Center for Elder Care and Advanced Illness, offers five recommendations in the areas of care delivery; clinician-patient communication and advance care planning; professional education and development; policies and payment systems; and public education and engagement, which collectively offer a roadmap for progress in the nation’s approach to end-of-life care and management.

Specifically, the committee recommends the following:

1. All health insurers should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life.
2. Measurable, actionable, and evidence-based quality standards for clinician-patient communication and advance care planning should be developed and change as needed to reflect the evolving population and health system needs to be consistent with emerging evidence, methods, and technologies.
3. Educational institutions, credentialing bodies, accrediting boards, state regulatory agencies, and health care delivery organizations should establish the appropriate training, certification, and/or licensure requirements to strengthen the palliative care knowledge and skills of all clinicians who care for individuals with advanced serious illness who are nearing the end of life.
4. Federal, state, and private insurance and health care delivery programs should integrate the financing of medical and social services to support the provision of quality care consistent with the values, goals, and informed preferences of people with advanced serious illness nearing the end of life. To the extent that additional legislation is necessary to implement this recommendation, the administration should seek and Congress should enact such legislation. In addition, the federal government should require public reporting on quality measures, outcomes, and costs regarding near the end of life (e.g., in the last year of life) for programs that it funds or administers (e.g., Medicare, Medicaid, the Department of Veterans Affairs). The federal government should encourage all other payment and health care delivery systems to do the same.
5. Civic leaders, public health and other governmental agencies, community-based organizations, faith-based organizations, consumer groups health care delivery organizations, payers, employers, and professional societies should engage their constituents and provide fact-based information about care of people with advanced serious illness to encourage advance care planning and informed choice based on the needs and values of individuals.

“The steps outlined in this report represent a clear challenge to redesign and reallocate the system and benefits to allow people near the end of life to receive social services that help them remain at home or in the community, which is where many prefer to be,” said Peres. “Harmonizing medical and social services for people and their families near the end of life helps eliminate provider incentives to shift dollars [and] ensures people receive care in the right setting at the right time in accordance with their informed preferences and values.”

To obtain a copy of the report, contact the National Academies’ Office of News and Public Information at 202-334-2138 or news@nas.edu, or visit www.altarum.org/cecai or www.medicaring.org.

Altarum Institute (http://www.altarum.org) integrates objective research and client-centered consulting skills to deliver comprehensive, systems-based solutions that improve health and health care. Altarum employs almost 400 individuals and is headquartered in Ann Arbor, Michigan, with additional offices in the Washington, DC, area; Portland, Maine; and San Antonio, Texas.