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Winter 2014 Vol. 14 Number 2

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Dying in America

Report calls for overhaul of end-of-life care

Dying is a topic few want to think about, let alone talk about. Yet, when asked, many Americans express strong views about the care they want to receive when they are seriously ill and approaching death. Despite strong feelings on the matter, the vast majority of Americans have not engaged in end-of-life discussions with their health care provider or family, partly because patients, families, and clinicians each wait for the others to initiate the conversation.

A recent report from the Institute of Medicine helped get the conversation started when it stated that the U.S. health care system is not properly designed to meet the needs of patients nearing the end of life and those of their families. The 21-member committee that wrote the report called for major changes to the health care system to improve care at the end of life. Such changes include more "advance care planning" by individuals; improved training and credentialing for clinicians; and for federal and state governments and private sectors to provide incentives for end-of-life discussions and to revise health care and social services payment practices to honor a patient's preferences.

"Patients can, and should, take control of the quality of their life through their entire life, choosing how they live and how they die, and doctors should help initiate discussions with their patients," said Philip Pizzo, co-chair of the committee. "It is important that the health care options available to individuals facing the end of life help relieve pain and discomfort, maximize their ability to function, alleviate depression and anxiety, and ease the burdens of loved ones in a manner consistent with individual preferences."

The committee proposed a model for advance care planning, which encompasses the whole process of discussing end-of-life care, clarifying related values and goals, and seeing that written documents and medical orders embody patients' wishes. The committee's model suggests these discussions should occur throughout one's life and that a conversation about values and life goals should be held around certain mature milestones -- turning 18, leaving home, getting married, encountering an illness, or becoming eligible for Medicare.

In addition, clinicians should initiate conversations about advance care planning and integrate them into ongoing care plans. Too few clinicians are proficient in basic palliative care, however, and often they are reluctant to have honest and direct conversations about end-of-life issues. The committee called for improved training and certification -- specifically regarding communication skills, interprofessional collaboration, and symptom management -- for all clinicians who care for individuals with advanced serious illnesses.

"Individuals should have time with their doctors to discuss end-of-life issues, and clinicians should receive the training and financial incentives for such discussions," said Dave Walker, co-chair of the committee. "The U.S. health system is geared toward providing care aimed at curing disease, rather than providing compassion and the comfort care most people prefer at the end of life. Without adequate advance care planning, the default decision is for doctors to treat a disease or condition, no matter the prognosis."

An additional benefit of advance care planning may be stabilizing total health care and social service costs, and possibly reduce them over time as compared to the status quo, the committee said. Opportunities for savings can occur by helping reduce preventable crises that lead to expensive and unwanted acute care services -- such as 911 calls, emergency room visits, stays in intensive care units, and hospitalizations. Pain and other unmanaged symptoms prompt many of these visits. The committee said savings from reducing such acute care incidents could free up funding for relevant supporting services -- such as caregiver training, nutrition services, and home safety modifications -- that would ensure a better quality of life and support patients' families.

-- Jennifer Walsh

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Committee on Approaching Death: Addressing Key End-of-Life Issues; Institute of Medicine (2014, approx. 630 pp.; ISBN 978-0-309-30310-1; available from the National Academies Press, tel. 1-800-624-6242; $83.95 plus $5.00 shipping for single copies).

The study was co-chaired by Philip Pizzo, David and Susan Heckerman Professor of Pediatrics and Microbiology and Immunology and former dean of medicine at Stanford University, and Dave Walker, former U.S. comptroller general.

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