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A new national program office on improving end-of-life care is now open at the University of Montana in Missoula a vital funding resource for the work your ethics program would like to initiate or continue. The office will be directed by Ira Byock, MD, president of the American Academy of Hospice and Palliative Medicine and a faculty associate in the practical ethics center at the university’s school of medicine.
Byock has worked in hospice and palliative medicine for nearly 20 years and maintains that health care professionals must help define a conceptual model of quality end-of-life care and outcomes measures. "I have seen some of the best examples of care and some of the worst," he says. "The key is for providers to understand the critical services that we must bring to bear to help preserve the family and the patient’s quality of life."
The office will administer grants for projects and programs that "demonstrate the provision of comprehensive end-of-life care and have national significance," he says.
Funded by the Robert Wood Johnson Foundation in Princeton, NJ, the office is seeking to award $12 million in grants over the next four years. Initiatives that qualify will cross a broad spectrum of health care systems and settings and offer care to patients of different ages, ethnic backgrounds, and medical diagnoses.
A direct call for proposals will be issued in mid-May, says Rosemary Gibson, the foundation’s senior program officer. "We are not talking research, but programs that represent prototypical efforts," she emphasizes.
A national advisory committee will decide which projects will be funded. One of the foundation’s main goals is to bring hospice services to a wider range of patients, including those who traditionally have had limited access to palliative care because of language barriers and socio economic status.
"Programs selected must meet the definition of palliative care," says Byock. "A demonstration project must follow the basic precepts of a team-based approach to end-of-life care, involve the patient and family (however that is defined), and extend to bereavement support as well." Projects also must include collaborative efforts among health care providers and community groups.
Examples of fundable projects include the following:
• a collaborative effort between an inner-city hospital and a faith community to draw upon combined resources to meet the spiritual and psychosocial needs of terminally ill patients and families;
• a vertically integrated health care network extending elements of hospice care to both children and adults;
• a health maintenance organization pilot project offering hospice care to patients with degenerative diseases such as Alzheimer’s or dementia or patients with chronic obstructive pulmonary disease, renal failure, or congestive heart failure. Hospice professionals maintain that patients with these conditions could benefit from palliative care but often are denied access because they don’t have a terminal diagnosis.
Byock tells Medical Ethics Advisor that he hopes to see clinical pathways for end-of-life care developed in the near future. The health care system and the medical profession have been complacent about the lower standard of care for dying patients for too long, he says. "We have been satisfied simply to tweak the system and call it fixed."
Patient- and family-centered team efforts are the best examples of quality care for the dying. "Patients often face death with the choice between aggressive life-prolonging treatment and an abyss," he laments. "We need to shine a light on this darkness and help people make a connection to something that will endure long after they are gone."