Black Death: Racial Justice, Priority-Setting, and Care at the End of Life
The title of this post is also the title of my book-in-progress. I’m personally and intellectually interested in how black people die. Of course, everyone is going to die one day, but black people tend to live shorter, sicker lives. We die roughly four years earlier than our white counterparts, with even wider gaps in some subpopulations of black people. My training as a political philosopher leads me to think carefully about distributive justice, that is, how societies divide benefits and burdens among the population. Or, to put it more plainly, who gets the stuff and how. Given my own intellectual orientation as a “race woman,” I can’t disentangle the distributive justice questions from the questions of racial justice. Priority-setting (how society decides which goals, resources, benefits, burdens, etc. are most important when making decisions about divvying up stuff) interests me given the tremendous gaps in health and wealth that black people experience.
End of life care interests me because I am concerned with what the dying process looks like for African Americans. Even in the process of dying, black patients do not receive the kinds of comfort care and pain management, for examples, that other patients receive. Yet, in the US some of the most significant medical expenditures occur in the last six months of life, and there is continuing discussion about how to manage those costs—conversations about priority-setting (even if the average person in the media doesn’t call it that). I worry that conversations about priority-setting in healthcare do not properly take into account the vastly different life experiences that black folks come to the table with. The purpose of this book is to fill in the gaps in the discussions about who gets “stuff” (in this case the kinds of “stuff” that will improve black life all the way to the end of life).
I’ll likely do a few progress posts as I grapple with issues that arise in the project and as things crop up in the media that are relevant to the work I’m doing.