Brown expert offers guide to end-of-life care

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Credit: Joan Teno, with permission of the family

Years ago, dying patients in most communities often had a single option if they needed hospice care. Now they have many more; competition reigns. This is one crucial reason why a Brown University researcher and end-of-life expert has helped develop user-friendly guides for both doctors and patients about the best hospice care options in the marketplace.

"While all hospice programs are very good, there are some programs that are really excellent," said Joan Teno, M.D., a professor of community health and medicine at the Warren Alpert Medical School of Brown University. "You want to choose the hospice program that is striving and achieving excellence in quality of care."

Teno's guide for doctors will be published in the Feb. 11 edition of the Journal of the American Medical Association. Her article, "Referring a Patient and Family to High-Quality Palliative Care at the Close of Life," is co-written with Stephen Connor, vice president for research and international development at the National Hospice and Palliative Care Organization.

Teno and Connor are at work on a user-friendly guide for patients and families that incorporates a portion of the JAMA article but with more streamlined language accessible to the general public.

Teno said she and Connor worked to synthesize existing literature on end-of-life, or palliative care with a simple goal. They wanted to create something easy to understand for both physicians and families who must choose between hospice or hospital-based end-of-life care.

Having such information at hand when a patient or family member is soon to die is increasingly important, Teno said, in large part because of heightened competition in the marketplace.

"And so we tried to define what you should expect," she said, "and define what high-quality care means at the close of life."

Overall, Teno said, she and Connor hoped to compile guidelines that addressed the three C's — whether care is "competitive, compassionate and coordinated."

For families, Teno and Connor are developing even simpler, easy-to read guidelines they've dubbed "The Five C's." They urge families to make sure a hospice or hospital palliative care program will provide:

• competent care by an interdisciplinary team;
• care centered on the patient and family needs;
• coordinated care that provides access to needed services;
• compassionate care; and
• care committed to quality.

Teno and Connor suggest families should make sure a hospice program is certified by a recognized national program, determine if a full-time medical director is on staff, and whether or not staff is available 24 hours a day, seven days a week.

Source: Brown University