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Palliative Care

Mar 23, 2009 8:00 AM

Internist Stephen J. Bekanich, M.D., selects words with the same deliberation a surgeon might handle instruments. When he speaks of patients’ wishes” and “desires,” he cuts to the core, conceptually as well as emotionally, of palliative care. “Physicians are not trained to think, ‘What does our patient want?’ Our model is ‘What disease do they have?’ and ‘How do we treat it?’ But it’s changing,” said the medical director of University of Utah Hospital’s Palliative Care Service.

“There’s so much more to helping patients than having a curative mind-set,” said Holli Martinez, M.S.N., F.N.P.-B.C., clinical nursing instructor and member of the service. “We try to preserve our bodies at all costs. Death is either seen as not an option or as a medical failure. We value life—which is good. But patients have choices.”

Palliative care is about options. Patients with serious chronic or life-threatening diseases don’t have to choose between curative care—chemotherapy, radiation therapy, or other treatments that carry the hope of cure—and comfort care that promises the relief of suffering, but the relinquishing of life-prolonging medical care. They can opt for treatments that will help sustain the quality of life they want through a plan drawn up in consultation with  the team of specially trained physicians, nurse practitioners, social worker, and chaplain.

“The global purpose of palliative care is to provide excellent care for progressive chronic disease, to relieve symptoms, and mitigate suffering,” said Kathie Supiano, L.C.S.W., referring to the 1990 definition by the World Health Organization. She has been a member of the palliative care service at University Hospital since its inception in January 2006. “You don’t see the word ‘death’ in there. You don’t see the word ‘dying’ in there. You don’t see the word ‘prognosis’ in there.”

Those belong to the definition of hospice—the “H word” often confused with palliative care. British physician Dame Cicely Saunders introduced the concept of specialized care for dying patients and, in 1967, founded the first hospice in London, according to The National Hospice and Palliative Care Organization. Utah’s late Sen. Frank E. Moss and the late Sen. Frank Church, D-Idaho, co-sponsored the nation’s first legislation in 1974 to federally fund hospice programs.Twelve years later, Medicare extended permanent coverage. Terminally ill patients with a prognosis of six months or less who forego curative treatment can qualify for pharmaceuticals, medical equipment, and nursing care, in addition to psychosocial and spiritual help, offered to their families as well.Usually hospice is provided in the home.

“Hospice is always palliative, but palliative care is not always hospice,” said Ginger Marshall, M.S.N., A.C.N.P.-B.C., A.C.H.P.N., a nurse practitioner on the service who is certified in acute care and palliative care. First offered to hospitalized patients in the United States in the late 1980s, palliative care extends the concepts of hospice to patients who may benefit from them earlier in their illness. University Hospital provides palliative care to hospitalized patients on a consult basis: physicians, patients, or family members must request the service. It’s provided in conjunction with—not in place of—active medical interventions.

Like hospice, palliative care focuses on the quality of a patient’s life, whether measured in years or hours. “It’s about how you want to live your life,” said Marshall, a clinical instructor in the U College of Nursing. To help patients arrive at their own definition, the team begins a “conversation.” The word belies its significance. It is not a casual exchange, but a structured, often emotionally intense, meeting that can last up to two hours. “That’s one of the gifts of palliative care: we give the time,” noted Supiano. She arranges the meeting with the patient, family members or advocate, in a private space away from interruptions. A clinician typically leads off: “Tell me, what do you understand about your condition?”

“It’s amazing to me how, when you ask patients who have chronic illness for maybe 15 years, they’ll have maybe three things right,” said Martinez, who joined the palliative care team last fall after completing a master’s degree at the U College of Nursing. “The biggest part of our job is education. We’re teaching about the disease process, about symptoms and stages, about what to expect. And we do a lot of listening to learn where they might need more knowledge.”

Read the complete article in Health Sciences Report.

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