Family-Centered Care and Evidence-Based Medicine in Conflict: Lessons for Pediatricians

摘要

In contemporary medical education and pediatric practice, “family-centered care” and “evidence-based medicine” (EBM) are frequently promoted simultaneously, as if the 2 are natural partners in the provision of high-quality care. These 2 concepts appear side by side in clinic and hospital mission statements, medical school course aims, and pediatric residency milestones.In fact, the 2 paradigms approach medical practice from radically divergent perspectives. Family-centered care rests on a biopsychosocial model of healing, is fundamentally holistic, and prioritizes the perspectives of patients and families in medical care, whereas EBM is, at its essence, the systematic application of science to practice. For most providers, EBM connotes provision of the highest-quality care based on the available medical science and is intended to minimize unwarranted variation in care that might result in patients receiving therapies that are unsafe, ineffective, costly, or untimely, compared with the gold standards of care derived from scientific evidence and ideally randomized controlled trials, in which “bigger” often means “better.” EBM has gradually supplanted experience-based medicine of decades past, wherein the “experience” is that of the physician. In both evidence- and experience-based systems, the provider is still at the center of the medical encounter.The following case explores several interrelated conflicts during a seemingly routine admission for febrile neutropenia, chiefly between family-centered care and EBM, but which also involved Western biomedicine and alternative healing practices, and social and medical models of disability.A 3-year-old boy with Down syndrome and high-risk pre-B acute lymphoblastic leukemia presented to our oncology clinic for a transfusion, after routine blood counts. He had been diagnosed 8 months previously and had received chemotherapy with vincristine and PEG-asparaginase 2 days previously. Although he had been feeling well at home, his temperature in clinic rose to 101°F and his absolute neutrophil count (ANC) was 10 cells/ μ L. …