Informing choice or teaching submission to medical authority: A case study of adolescent transitioning for sickle cell patients

Objectives. To understand how some of the top pediatric sickle cell centers are transitioning their adolescent patients from pediatric care given the diminished availability and quality of services in adult care. Design. The ethnographic research for this project was carried out over more than seven years. Patients, medical professionals, and disease advocates were interviewed and observed in clinics, homes, offices, at national meetings, and at sickle cell-related events. This paper focuses narrowly on adolescent transitioning programs that are designed to educate teenage patients about sickle cell disease (SCD) and treatments; how to communicate with medical professionals; and when it is appropriate to use healthcare services. This paper uses the experiences of a social worker in a pediatric hospital clinic as a lens for understanding the role patient education can play in improved outcomes. Results.Adolescent sickle cell patients are already skeptical about medical care. In transitioning meetings, legitimating that skepticism worked better than simply teaching them to submit to medical authority. One important strategy was to teach patients about what medical anthropologists and sociologists call the culture of medicine. By learning about how healthcare institutions operate, the social worker felt that they were better able to ask relevant questions, understand the limits of both the treatments and care, and to resist institutional demands without alienating themselves from the staff. Conclusion. For the past 15 years, cultural competency training has been considered one of the best approaches for improving patient care. The rationale for cultural competency is that if a physician understands a patient's 'culture' he or she can better communicate with, and therefore treat, a patient. This research demonstrates that perhaps a better approach is for patients to be taught how medical professionals think and how healthcare institutions rationalize treatment options. In adult care, patient services are nominal and medical professionals have less time to develop relationships with patients. Given these constraints, enhancing self-advocacy through knowledge about the culture of medicine should be the focus.