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Reforming End-of-Life Care

Written by Athan Bezaitis

Wednesday, 03 December 2008

Los Angeles, California - The word palliative comes from the Latin palliare, which means to cloak. In medical terminology, it stands for treatment that hides symptoms or reduces the severity of disease rather than offering a cure. The purpose is to relieve suffering for people facing serious illnesses. Hospice, or end-of-life palliative care, has been available in the United States as a Medicare benefit for nearly 25 years yet is vastly underutilized. According to a 2003 study by the Center for Gerontology and Health Services, although the majority of patients prefer to die at home, nearly 60 percent of deaths occur in the hospital. While hospice programs are intended to provide palliative services in the last six months of life, the National Hospice and Palliative Care Organization reports the median length of stay once enrolled is 22 days, and 35 percent of participants die within the first seven days of admission. Susan Enguidanos, assistant professor at the USC Davis School of Gerontology and a nationwide leader for reform in end-of-life care policy, advocates for new “pre-hospice” palliative care that would provide a bridge between standard medical care and hospice care. “The low enrollment in hospice services and the short length of time enrolled before death attest to the need for end-of-life care programs that address these access barriers,” she said. Enguidanos led a 2007 study that found in-home palliative care not only increased patient satisfaction but reduced medical costs and services. Research compared conventional medical care, that which aggressively treats disease, to in-home palliative care of homebound patients with a prognosis of nearly one year or less to live. The palliative care model, she said, is more cost-efficient and conducive to the needs and preferences of the patients. Ongoing research with Kaiser Permanente has helped her develop and test inpatient palliative care programs for terminally ill hospitalized patients. “Hospital palliative care programs provide much-needed pain and symptom relief and emotional support for terminally ill hospitalized patients and their families,” she said. At the USC Davis School, her courses on “Psychological and Social Aspects of Death” and “Dying and Continuum of Care: Systems Perspective” offer aspiring health and medical professionals a firsthand look at end-of-life issues. “Most medical students receive minimal education or training on end-of-life care aspects. Our medical and educational system focus largely on saving lives rather than promoting quality of end-of-life experiences,” she explained. “These courses expose students to an alternate framework that promotes communication with patients and care consistent with their wishes.” The courses inform students about the importance of legal documents such as the Advance Health Care Directive, which allows patients to designate health care decisions to others in the event they are unable to communicate their needs. “An advanced health care directive permits loved ones and doctors to reduce confusion and disagreement over personal wishes at a time when the ailing individual is too sick to express them on their own,” she said. This fall, one of Enguidanos’ former students contacted her not long after graduation with the news that her father had passed. “I was the only one at home with him and the only family member in the area around to make decisions regarding organ and tissue donations and even where to bury him,” she wrote in an e-mail. The student went on to thank Enguidanos for allowing her to be prepared for the role she was forced to play at the end of her father’s life, even suggesting that her course be required for undergraduates. “The lessons about funeral expenses, end-of-life care, the grief cycle and everything else we learned helped me to handle the situation and help the rest of my family through it as well.”

 

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