Patient-Centered Care Redistributes Responsibility
Caring for adult CF patients
CF is a genetic disease that affects approximately 30,000 Americans by damaging lung function and causing severe breathing problems and life-threatening infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Long considered a pediatric disease—as recently as the mid-1980s, few patients made it past their teen years—medical advances have resulted in people with CF living increasingly longer lives, well into their 30s and 40s and beyond. As patients get older, however, the disease tends to become more complicated, according to Jaffrey, as does the regime of high-calorie supplements, antibiotics, digestive enzymes, and breathing treatments—as well as chest therapies—that patients administer to themselves every day at home orally or via nebulizer, IV, or stent, on both a scheduled and as-needed basis.
CF patients are routinely hospitalized once or twice a year for approximately two weeks for IV antibiotic treatments and are admitted through emergency departments for a variety of breathing, digestive, or infectious flare-ups. LIJ Medical Center admits between one and five CF patients a month, and upon admission, their medication routines were traditionally taken out of patients' hands and turned over to hospital nursing staffs. The result was that patients waited for 15–29 hours for their first breathing treatment, 18 hours for their first round of IV antibiotics, and often missed snacks and meals because the digestive enzymes they needed were not delivered in advance of eating.
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