(2013). The “Difficult Patient” Conundrum in Sickle Cell Disease in Kenya: Complex Sociopolitical Problems Need Wide Multidimensional Solutions. The American Journal of Bioethics: Vol. 13, No. 4, pp. 20-22. doi: 10.1080/15265161.2013.767960.

In the September-October 2001 issue of the Hastings Center Report, editor Gregory Kaebnick encouraged bioethicists to turn their attention toward “easily overlooked, relatively little-talked-about societal topics” such as race. In 2000 the president of the American Society for Bioethics had called for a more socially conscious bioethics. Race was risky territory, Kaebnick pointed out, but this challenge did not justify avoidance. Over the next fifteen years, the response to this editor's invitation to examine the racial dimensions of medicine in the (...) Report was limited both in quantity and in terms of the range of topics covered. All told, the bioethics community has not responded to the editor's call for bioethicists to engage with the racial dimension of medicine, and the Report has not really come through on the tacit commitment made in 2001. The lack of interest in race matters evidenced in the Report as well as the American Journal of Bioethics has also prevailed in medical humanities journals, whose few pieces on race have tended to remove race relations from our current realities in two ways: some articles locate medical racism in the American past or in colonial Africa, while others analyze the medical disorders of fictional characters. Bioethicists have not embraced the opportunity to create a sociologically and historically informed bioethics that might be applied to the lives of black Americans and their unending health crisis. (shrink)

(2013). Disrespectful Care in the Treatment of Sickle Cell Disease Requires More Than Ethics Consultation. The American Journal of Bioethics: Vol. 13, No. 4, pp. 12-14. doi: 10.1080/15265161.2013.768857.

(2013). De-Escalating Conflict: Mediation and the “Difficult” Patient. The American Journal of Bioethics: Vol. 13, No. 4, pp. 11-12. doi: 10.1080/15265161.2013.768855.

(2013). Intractable Difficulties in Caring for People With Sickle Cell Disease. The American Journal of Bioethics: Vol. 13, No. 4, pp. 22-24. doi: 10.1080/15265161.2013.767959.

(2013). Acknowledging Levels of Racism in the Definition of “Difficult”. The American Journal of Bioethics: Vol. 13, No. 4, pp. 16-18. doi: 10.1080/15265161.2013.767964.

An eighteen‐year‐old with sickle cell disease was admitted to the pediatric hematology service at his local children's hospital for management of an acute pain crisis, one of many such admissions. He had a good relationship with his primary hematologist and primary nurse, but with other health care providers, there was evident friction. Sometimes, he was simply rude, rolling over and pretending to sleep in response to questions about his symptoms. When frustrated or convinced that his pain was not being addressed (...) appropriately, he was prone to yelling and cursing at his nurses. After members of the health care team complained, their supervisor decided to transfer the patient to an adult general medicine service. Reasons cited for the transition included the stressful work environment created by the patient's actions, his refusal to follow directives from staff (although he was generally adherent to treatment), and the hypothetical harm to other young patients who might witness his behavior. Was this a just outcome? Is it ever permissible to deny access to pediatric care to a patient whose best interests would be served by it? Can access be withheld for “bad” behavior, and can transfer of care be wielded as a punishment? (shrink)

(2013). Not Your Typical Frequent Flyer: Overcoming Mythology in Caring for Sickle Cell Disease Patients. The American Journal of Bioethics: Vol. 13, No. 4, pp. 18-20. doi: 10.1080/15265161.2013.767963.

(2013). Pain, Chronic Pain, and Sickle Cell Chronic Pain. The American Journal of Bioethics: Vol. 13, No. 4, pp. 14-16. doi: 10.1080/15265161.2013.768859.