Brain Death, Black Folks, and Bioethics

I've spent the afternoon discussing death, dying, and the nature of consciousness with my colleague, Jo Von McCallister. The conversation was prompted by me trying to gather my thoughts about the New Yorker piece that updated the story of Jahi McMath, the young African American girl who suffered catastrophic brain injury after a tonsillectomy in 2013. Her case initially made news because Oakland's Children's Hospital, where she received care, declared McMath brain dead. Meanwhile, the family disputed the hospital's finding and fought to keep McMath on life support. I'll probably post later on death and brain death, but one aspect of this story that I've found compelling from the beginning was the disregard shown to the family.

The bioethicists who were interviewed in the mainstream press tended to focus almost exclusively on McMath's diagnosis of brain death, which included assumptions about the implicit "unreasonableness" of her family. However, they ignored the cultural context, and therefore, missed an important opportunity to address the institutional racism in the medical establishment. It seems that the family attempted to alert medical personnel immediately after McMath's procedure that she was experiencing complications and that their concerns were dismissed or ignored. African Americans often perceive (and research backs up our long-held suspicions) that our medical concerns, including the need for pain management, are not regarded with the same degree of seriousness as white patients' concerns. Yet, bioethicists missed an important opportunity to acknowledge the role that trust between providers and patients/families plays in how patients receive medical information. The combination of devastating complications following what should have been a routine procedure, the perception that medical personnel did not respond quickly or aggressively after the family initially alerted them that McMath seemed to be bleeding profusely, a long history of the medical establishment ignoring and/or abusing black patients, and the insensitivity that the hospital personnel showed to the family after the damage was done made it quite reasonable for the family to question both the hospital's diagnosis and their underlying motivations. If bioethicists are serious about helping patients, their families, and the general public understand complicated ethical issues surrounding catastrophic diagnoses like brain death, then we have to take seriously the ways in which race and racism shape perceptions of the medicine and the medical establishment. It is not sufficient to "explain" brain death and then dismiss families, particularly African American families, as irrational when they challenge the explanation. In my project in progress, I argue that given what we know about how race and racism (implicit, explicit, and institutional) often shape both the experiences of African American patients and families (like McMath's) and how medical personnel interact with African American patients and families, bioethicists would do well to include considerations of race and racism in our ethical decision-making.

Some may contend that what "really" matters is whether the patient was, in fact, brain dead, and as tragic as the surrounding circumstances were, they should have had no bearing on what was ultimately the "right" thing to do. But "real world" stuff is what we do, and to ignore the way that race and racism shape our lives (beyond pathologizing black people or tracking disparities in morbidity and mortality) is to reinforce the white racial privilege that permeates bioethics.