Dying While Black

Each year, as our nation reflects on the life and legacy of Dr. Martin Luther King Jr., I look for contemporary signs of change, examples of how we as a society have evolved in our understanding of race and how and where African-Americans have folded deeper into the American story and been embraced by the country they’ve called home for centuries.

This year, I didn’t have to look any further than my own backyard. Last week, the Sun Reporter, a Bay Area weekly that runs local and national news involving African-Americans, featured a story on Jahi McMath. Jahi was a 13-year-old African-American girl whose untimely death, following a tonsillectomy, lead to weeks of contentious debate between her family, her medical providers, and the national media regarding her diagnosis of brain death. Being a local pediatrician* I was well-aware of the story. But what struck me when reading this particular piece, was the way the periodical characterized the family’s mistrust of the medical system.

Historically, there has been “bad blood” between some African-Americans and the US health care system. In many cases, that tension can be directly linked to documented cases of exploitation and deceit. Like, for example, when the US Public Health Service purposely withheld treatment from African-American men infected with syphilis, allowing them to suffer and sometimes die, to study the effects of untreated disease from 1932-1972.

Or take the case of the Henrietta Lacks, the African-American woman from whom the world’s oldest and most commonly used line of human cells (HeLa cells) were obtained in 1951. Despite being the substrate for some of the greatest advances in medical research, biological science, and pharmaceutical development, neither she nor her family received any financial compensation or recognition. Her cells were obtained without her consent, manipulated and sold without her family’s knowledge, and her genome and her family’s medical records were made public without their approval. In August of 2013, less than a year ago, the National Institutes of Health finally publicly acknowledged Henrietta Lacks’ contribution to science, agreed to protect her family’s private medical information, and allowed her family to be privy to future research utilizing her cells.

Given these egregious missteps in US history, you might not be surprised to know that some African-Americans actually believe the US government introduced crack into their neighborhoods or created AIDS to kill them. The woefully unsuccessful, and I would argue, recklessly enforced, War on Drugs aside, some black folks just don’t trust the core institutions that are created to serve the public good, and chief among them may be our health care system.

In the case of Jahi McMath, I have to wonder if feelings of distrust ran deep and strained the relationship between Jahi’s family and her medical providers, as they sought to find a common ground to discuss an incredibly difficult and distressing reality – a young girl is dead. Add to that discussion the general public’s confusion regarding the medical definition of death and the media-bolstered accusations that everyone, from the family and their lawyer to the hospital and its personnel, mismanaged the situation, and it is easy to see how the private bond between the medical system and the community it serves can fray and break.

Underlying this all has been the hurtful allegation that the hospital wanted to discontinue Jahi’s life support to save money or that the family’s limited resources affected their ability to advocate for her care. The obvious comparison here is the Terri Schiavo case, in which a 26-year-old woman was kept on life support at the insistence (and in part through the financial support) of her parents for 15 years. Although, I must say, that case was very different because the ultimate diagnosis was a coma-like condition called persistent vegetative state where the brain continues to function, albeit at a significant deficit, and in Jahi’s case her brain was determined to no longer be functioning at all.

Ultimately, it seems, despite being cared for at a hospital that local doctors like myself revere as a leader in practicing in and for, communities of color, a disconnect remained. To me, it suggests that perhaps it was the family’s distrust of the system to adequately care for Jahi and the complicated medical language surrounding the diagnosis of death that created an impasse. That impasse gave way to an unnecessarily long period of suffering for Jahi and her family and it must be prevented in the future.

But how? And why is this so important? There are two lessons here.

First, it is just as important now as it has ever been, to elevate the national dialogue about race as we continue to seek to understand each other as human beings.

Second, and most importantly, part of that understanding is rooted in communication and in every area where we miss an opportunity to effectively communicate with each other, we risk alienating people from the very institutions on which our communities rely, including medicine, education, and justice.

It is on this note that the media completely missed the point. Part of our national evolution to understand race involves recognizing and acknowledging the nuanced ways it remains relevant in our lives. One of those ways is in the way we communicate across cultures.

Effective cross-cultural communication (and one can argue that any communication outside one’s area of expertise is cross-cultural), requires identifying the contextual clues – the values, knowledge, and historical roots that contribute to how individuals interpret information and make important decisions. This is key to understanding any human behavior from basic lifestyle choices to the painstaking and charged decisions involved in end of life care.

In America, there is a history there that makes dying while black a particularly contentious issue, one fraught with fear of mistreatment and maligned intention, and one that must be addressed openly, honestly, and with compassion. Whenever we are able, those of us in positions of institutional power, must acknowledge and uphold the dignity of all human life as we practice across centuries of experience and knowledge. If we can do this for the most marginalized, then we have some hope of healing the scars of our past and addressing the ongoing struggles of our present.

I write this post in loving memory of Jahi McMath and Dr. Martin Luther King Jr, beloved members of the African-American community who died challenging all of us to learn to understand each other better.

*Disclaimer: Although I am a pediatrician in the Bay Area I was never involved in Jahi McMath’s medical care and this piece is not intended to discuss any details of her clinical course or treatment. In addition, this post is not meant to speculate on the feelings of the McMath family or the intentions of the medical providers who rendered her care but rather to stimulate a larger discussion about the ways race may remain relevant in each of our lives and how we can confront that reality in a meaningful way.

Update: Thank you to everyone who read, commented on, and shared this post. Given the significant interest it garnered, it was published in the San Francisco Chronicle on Sunday, February 2nd! Check it out here!

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31 thoughts on “Dying While Black

    • Thanks for reading the piece! As I said in the disclaimer at the bottom of the piece, I was not involved in any aspect of Jahi McMath’s care and this post was not meant to reflect any part of her clinical course or treatment. I will edit the piece to say “tonsillectomy” as opposed to “routine tonsillectomy” to re-iterate this point. Thanks again for taking the time to read this piece.

  1. This was extremely well written, thoughtful, and thought-provoking. I applaud your efforts to see the forest, not the trees. This situation has captivated me, and many others, from the beginning. There are too many rumours, too much misinformation swirling around this. Maybe this will teach people to see it from a different perspective, like it did with me.

    • Thank you! This case was very sad and troubling and I think it forces us to look for lessons so we find some common ground to deal with the complicated issues in medicine and life in general really. Thanks again for the read!

  2. Nicely written, thank you. Have shared on LA Times.

    There are people of every race who think the Government is watching them at all times (as if their lives are so interesting), or who think the Government is trying to kill them (as if they are that important to President Obama).

    What makes people tick is a fascinating thing. Thank you for this perspective.

    • Thank you! And thanks for sharing it! It is true, there are those among us who are parnoid. I think the difference I am trying to make here is that for those communities who have a history of being hurt by the government or systems that are created to protect them, their concern for future pain, is real and in some cases, warranted. Thanks again for taking the time!

  3. As a nurse and a mother, thank you for a very well written piece. A parent should never have to bury their own child, it is a level of hell that few understand. Thank you again for your well thought out point of view

  4. I enjoyed reading your article and seeing the story from an African American’s perspective. This is very much in line with another video I watched–that from a medical ethics specialist that stressed the importance of not only how we communicate but even what words we choose to use when discussing the death of a loved one. There is much to be learned from this story.

  5. “the Terri Schiavo case, in which a 26-year-old woman was kept on life support at the insistence (and largely through the financial support) of her parents for 15 years.”

    IIRC, all her work-related benefits (including health insurance) ended within a year of her collapse.

    At the beginning, before litigation began, her husband and parents co-operated to raise funds to send her out of state for the implantation of experimental intra thalamic stimulators (in later CT scans you can see them floating freely in the CSF that has replaced the dead cortical tissue).

    Per the final guardian ad litem’s report, efforts at therapy continued for over 4 years after her collapse at various facilities.

    But once at the Hospice residential facility her care was paid for by a state program, similar to Medicaid, whose name I can’t remember right now.

    • Thanks for your response! After looking into it some more I came across this article in the Washington Post in 2005 http://www.washingtonpost.com/wp-dyn/articles/A58069-2005Mar22.html on the issue of Terri Schiavo’s medical expenses. It appears it was not entirely clear how much her family depended on the State/Federally funded program, but Medicaid certainly paid for some of her medical expenses. At this point, any speculation as to how much Medicaid covered would simply be speculation. So it may be more accurate to say, “and in part through the financial support of her parents” and I will amend the post accordingly. Thanks!

  6. Very well written. Hopefully you will educate more people on the nuances of good communication which leads to peace and compassion.

  7. Thank you so much for a powerful redirect in perspective, and context. I appreciate a sense of the overarching framework of the situation. The extraordinary lengths this story has taken, fall more easily into place now, when you take into consideration a more naturally suspicious philosophical preset. Thank you for the insight.

    • Thanks for your comment! I have to be honest, I don’t know the framework that truly was at play in the situation. But I think it is important to take these complicated moments and breakdown what may underlie how we interpret them, and ultimately how we understand each other.

      • Yes, exactly, I may not have stated that too too clearly. That was to say, your article gave us a larger perspective. Thank you!

  8. Rhea, thank you for this thought provoking and wonderful piece! I was wondering if you knew where to start – what are some pearls of effective cross cultural communication, or some resources for learning to expand our toolkits? How do you phrase questions to best openly understand where a family is at? Thanks!

    • Thanks for your comment! I am really excited about advancing the ways we practice culturally competent care in the field of medicine and I’ve actually been developing a short 2 session course for Stanford pediatric residents on this very topic! I’ve listed some of my favorite resources below and I’d love to continue the conversation if you have ideas/resources you’d like to share with me or others through this site as well! Cheers!

      This paper really gets into why all clinical communication is inherently cross-cultural and breaks down helpful frameworks for building your own language to ask/discuss these topics in a clinical setting. It particularly addresses the LEARN (Listen, Explain, Acknowledge, Recommend, Negotiate) and Kleinman models for cultural assessment. They even offer sample questions to use! (If you have trouble accessing it, I can forward you the paper by email).

      This is the AAP’s guide to health literacy in community pediatrics. The slides are excellent and also offer a framework to initiate cross-cultural dialogue in the clinical setting.

      I would also recommend checking out the Institute of Medicine’s report “Unequal Treatment” and the documentary “Unnatural Causes” for more background information on why these discussions are so important. Finally this is an excellent piece on racism’s impact on health outcomes by Dr. Camara Phyllis Jones from the CDC.

  9. Good job Rhea! I enjoyed reading this and the comments as well. As always, you expound a unique perspective that only a few can see and make it easy for others to understand. Thanks!

  10. Thank you for a post written with every effort to not be contentious. while I have my own opinions about where fault lies, it is refreshing to read a post that is entirely about where we should go from here; rather than about whose fault it is. (or worse, how the medical profession has it all wrong because the writer wants her to be alive)

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