News Release

Bridging the Disconnect Between Patient Wishes and Care at the End of Life

Policy Analysis Examines Quality Issues in End-of-Life Care and Barriers to Advance Care Planning, Palliative Care and Hospice Care

Along with people’s reluctance to discuss death and dying, barriers to high-quality end-of-life care include a fragmented delivery system that hinders communication of patients’ wishes across care settings and payment policies that discourage end-of-life care discussions and encourage aggressive treatment, according to a new Policy Analysis from the nonprofit, nonpartisan National Institute for Health Care Reform (NIHCR).

Written by researchers at the former Center for Studying Health System Change, the policy analysis provides an overview of quality issues in end-of-life care and discusses barriers to use of advance care planning, palliative care and hospice care. The analysis also outlines policy options to improve end-of-life care.

“Most Americans want to die at home, but most die in hospitals or other facilities. Most people care more about quality of life than prolonging life as long as possible, but many receive invasive, life-sustaining treatments that diminish quality of life,” the analysis states. “Along with increased public engagement about the issue and broader reforms to foster patient-centered care, policy options to improve end-of-life care include greater use of shared decision making among patients and clinicians, improved care coordination, greater integration of health care and long-term social services, more use of palliative care to relieve pain and other symptoms outside of hospice, better access to hospice services, and training clinicians to discuss end-of-life care preferences with patients and families.”

The Policy Analysis—Bridging the Disconnect Between Patient Wishes and Care at the End of Life—is and was written by James D. Reschovsky, Ph.D. , a senior fellow at Mathematica Policy Research; Amanda E. Lechner, M.P.P., a health research analyst at Mathematica Policy Research; and Alwyn Cassil, principal at Policy Translation, LLC.

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The National Institute for Health Care Reform (NIHCR)is a nonpartisan, nonprofit 501 (c)(3)organization created by the International Union, UAW; Chrysler Group LLC; Ford Motor Company; and General Motors. Between 2009 and 2013, NIHCR contracted with the Center for Studying Health System Change (HSC) to conduct high-quality, objective research and policy analyses of the organization, financing and delivery of health care in the United States. HSC ceased operations on Dec. 31, 2013, after merging with Mathematica Policy Research, which assumed the HSC contract to complete NIHCR projects.