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Why the mismatch between quality and spending? Ira Byock, M.D., director of Promoting Excellence in End-of-Life Care, pointed to Medicare’s reimbursement rules, which drive doctors to choose futile and expensive end-of-life procedures over palliative care, which is applied early on in a patient’s illness and focuses on quality of life.

Byock offered the definition of palliative care that has been developed by the Public Policy Committee of the National Hospice and Palliative Care Organization, which represents the hospice industry: “Palliative care is interdisciplinary care for persons with life-threatening illness or injury which addresses physical, emotional, social and spiritual needs and seeks to improve quality of life for the ill person and his or her family.” Palliative care is a discipline, he said, and hospice care is the best-developed system of delivering it.

“The general public expects that comfort and quality of life are simply part of good medical care,” Byock said. People expect “that when you go to a reputable medical center or respected doctor’s office and practice, things like clear communication, ethical decision-making, care planning that respects a person’s values and preferences, coordination of care between visits and among providers, crisis prevention and early crisis management are all routine. Delivering on those reasonable expectations is the challenge that really brings us here today.”

Byock said that there are two reasons why the health care system often promotes life-prolonging care without attention to patients’ comfort and quality of life. First, he noted, physicians have been trained to save lives, and their practice patterns and the systems in which they work support this exclusive focus. Few physicians, he said, have been taught how to have an emotionally difficult and time-consuming discussion with patients about the alternatives for care. Because of the pressures of a busy practice, it is often easier for a doctor to admit a patient to the ICU than to have such a discussion.

Second, the payment incentives within Medicare and most private health plans support a focus on acute, life-saving care, while reimbursements for discussions with patients are set so low as to be actual financial disincentives. (Doctors must constantly meet productivity goals to support employee costs and office overhead.)

An even greater payment problem is that Medicare and most private health plans require a patient to give up life-saving care before they will make a hospice plan available. This policy has come to be known in clinical circles as the terrible choice.

Byock said that the terrible choice creates a Catch-22 situation in which the emotional and spiritual support intended to help a person let go of death-prolonging care is available only once the patient has decided to forgo life. It has also created a model of care that focuses on comfort and quality of life only after aggressive life-saving treatments have been discontinued, rather than during that period.

The requirement to choose was built into Medicare by Congress in the early 1980s, because legislators demanded cost-neutrality and assumed that if both types of care were available simultaneously, costs would rise. Current research suggests otherwise, Byock said. Several directors of Promoting Excellence in End-of-Life Care demonstrations tracked costs as they conducted their programs, and two of the five demonstration programs featured at the conference are illustrative.

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Promoting Excellence in End of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit PromotingExcellence.org for more resources.

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