Mrs. J lay in her bed, surrounded by men and women in white coats—a team approach to making decisions about her future, care, and treatment. Each of the white coats was a specialist in his or her own area of oncological practice. “The tumor has spread from your lung to your back,” said the lung specialist. “Once the tumor is in your bones, the chemo won’t help,” noted the bone specialist. “So radiation treatment is the next option,” the radiation oncologist commented. “But you can’t stay here,” said the case manager. “Of course, we know this is hard,” commented the social worker. “We will do everything we can,” said the primary oncologist.
Care coordination—the new buzzword. I recently heard Atul Gawande in a “TED talk” state that during the 1970s, a patient had the equivalent of 2 full-time staff care for him during a hospital stay. In 2012, that number had increased to 15 per patient, largely because of technology and specialty practice. Has all of this helped? In the U.S. healthcare system, outcomes are among the worst in the world, yet costs are among the highest.
At the time I met Mrs. J, my job was to train new nurse practitioners (NPs) at the Commonwealth Care Alliance (CCA) Senior Care Options program in Boston. At CCA, the NP was the majordomo for patient concierge care for disenfranchised, vulnerable populations. The NP carried a small caseload and formed tight relationships with her patients, all fragile elders, who had an average of 7 chronic diseases and took an average of 18 medications a day prescribed by an average of 9 different providers. Lena was Mrs. J’s NP and had invited me to her first team conference, which was held in a hospital for the purpose of discharge planning.
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We stood, the 2 of us, in the corner and listened as each specialist addressed that component of Mrs. J’s illness with which he or she was directly involved. I watched her confused look as she gazed from one face to another and recognized her desire to please each of these specialists, all top-notch doctors. When they began to discuss transferring Mrs. J to a skilled nursing facility with daily ambulance rides to the radiation suite, Lena interjected, “Mrs. J, tell us what you would like.” The room became strangely silent as everyone paused to reflect on her next words. “I want to go home,” said Mrs. J.
Lena developed a discharge plan that included extensive hands-on care and pain management. The hospital care manager advocated for a nursing home, stating that home was not safe. But Lena knew differently. She arranged for Mrs. J to return home with a health aid 12 hours a day, a visiting nurse daily to administer pain medication, and with Lena visiting 3 to 4 times a week to check in on her and to support her daughter’s efforts in caring for her dying mother.
Mrs. J died peacefully at home within months. It was what we call a “good death.” Mrs. J was comfortable at home with her cat and with her daughter who was active in her care. CCA spent far less on home care than it would have spent on hospitalization, and Lena learned the true meaning of patient-centric care and doing “all we can.”
In a care coordination system, the effort focuses on systems and illness. In a patient-centric model, the effort focuses on the patient’s wishes. We are missing the big picture by buying into this overspecialized, technocratic system.
Margaret Ackerman, DNP, APRN, is an assistant professor at Salem State University in Salem, Mass.
