Posted on May 20, 2014 at 2:35 AM
by Keisha Ray, Ph.D.
Like many others, I followed the very unfortunate case of Jahi McMath. McMath is a 13 year-old black child who went into cardiac arrest and suffered irreparable brain damage after undergoing a tonsillectomy to relieve sleep apnea. Her story was frequently in the news as a battle between Children’s Hospital Oakland, where her surgery was held and whose recommendation to discontinue all life-saving practices conflicted with her parents’ desires to keep her on life support. This battle of conflicting desires has different components, with the major components being legal and medical. Medical practitioners, children’s rights advocates, right to life groups, legal experts, and bioethicists have all weighed in on the relevant issues that a case like Jahi McMath raises in each milieu. However, one issue that is being left out of the discussion is the issue of race and medicine. Bioethicists are calling for the public to inform themselves about the concepts that are common among bioethicists, such as the medical and legal definitions of death rather than relying on strictly emotional responses. But bioethicists must also advocate using the lessons about race and culture and their relationship to decision-making in medicine that bioethicists themselves are well aware of.
The case of Jahi McMath presents an interesting cross section of medicine and the role race and culture play in making medical decisions, particularly end-of-life decisions. Without assuming that all members of a particular race share the same apprehensions about medicine, we have to consider the historical relationship between racial minorities and medicine, while also employing the basic standards of healthy patient-medical practitioner relationships. Medical practitioners have to understand the relationship between race and culture and medical decisions to understand why patients and/or those responsible for making decisions for patients, make particular choices about health care. This is especially true when trying to understand why decision-making parties make certain choices about end-of-life care and when those choices are contrary to medical advice. This idea seems to be lost in the case of McMath and her family and in the way the case is reported by news outlets.
The contentious nature of Jahi McMath’s case begins after McMath was declared brain dead by physicians based on the loss of brain function, including her brain stem. A federal court order then prohibited Children’s Hospital Oakland, where McMath had the procedure, from removing life-sustaining systems. After an agreement was reached between McMath’s family and the hospital, McMath
was released to the coroner, who then released her to the custody of her mother. She was then placed in a long term facility, where she remains.
The McMath case also raises a conceptual and metaphysical issue concerning the medical meaning of death. But beyond the medical and legal aspects of the McMath case, there is the commonly overlooked factor of culture and decision-making. Understanding patients’ and their families’ decision-making approach is important to the patient-medical practitioner relationship because it can foster dialogue between practitioners and the family. To foster dialogue, it is important that a patient’s family not feel alienated or ignored. One way to prevent this is to take into consideration the patient and the patient’s family’s culture. For instance, the McMath family has identified themselves as Christian. It is very common for blacks to be Christian and to allow their Christianity to influence their decisions (as with Christians from other cultures). Acknowledging this can shed light on why a Christian family, such as McMath’s family, would want to continue life-supporting procedures and leave life and death decisions to their God. Taking into consideration the influences on patients’ medical decisions, such as their Christian religion, may make a patient feel less ignored and perhaps more likely to accept and come to terms with physicians’ unfavorable care recommendations. However, it is possible that a medical practitioner’s recommendation to end life-supporting procedures because the patient will not recover, may not be accepted based on the family’s Christian beliefs. But it is also possible that a medical practitioner’s recommendation to end life-supporting procedures is not accepted because of the family’s culture and the past and present experiences of individuals from that culture.
Another aspect of the McMath case that is frequently discussed among bioethicists that is left out of discussions about the McMath case is the legacy of distrust and suspicion between the black community and medicine. Historical cases like the Tuskegee syphilis study, eugenics, and race-based medicine that relied on the idea that black individuals were mentally and physically inferior to white individuals have created a lasting sense of distrust and alienation from medicine by many blacks. When interacting with black patients, medical practitioners cannot ignore that the remnants of poor health care and poor treatment of blacks in the past that still affects the modern relationship between blacks and their caregivers. Some studies have documented the lingering weariness that blacks (and other racial minorities) have of medical practitioners, including how this weariness is often more pronounced when dealing with end-of-life issues.
The common strategies that medical practitioners use to create and maintain a healthy patient-physician relationship such as, educate, inform, listen, consider, and respect have to be used with black patients, just as they are used with other patients. However, when black patients are concerned, medical practitioners have to use these strategies while also considering the historically poor relationship blacks have with medicine. Bioethicists want the public to use the concepts that bioethicists know very well, discuss with their colleagues, and teach to their students, but bioethicists must also be advocates for using the lessons about medicine and culture that are also common to bioethicists’ education.
Another concern that influences medical decision-making by black individuals that medical practitioners have to be aware of is perceived racism (rightfully or unrightfully so). For instance, because of past transgressions by medical practitioners and even some instances of current unjust treatment, when things happen that patients and their families do not agree with, such as early discharge or when requested diagnostic tests are not administered, it can lead to patients and their family wondering if these things were done or not done because of prejudices and racism. To be fair, however, these concerns by minorities occur outside of medicine. To remedy this, to assure patients that medical practitioners’ recommendations are not made based on a patient and her family’s race, medical practitioners must communicate their care plans and practice diligence when educating patients and their families about their condition and possible treatment plans. Medical practitioners can also remedy any concerns about prejudice by showing respect for patients and their family’s decisions. And one way to show respect is to understand why patients and their family make particular medical choices.
When interacting with black patients and black families, there are things that are not unique to interactions with these groups. Individuals in all racial groups want great care by competent practitioners. They want to be heard, respected, and to have their religious and cultural beliefs acknowledged. In addition, interacting with a racial group with a history of racism and poor treatment by medicine on a much broader level, special care has to be taken when discussing end-of-life issues. This is what is missing from our discussions of the McMath case. We may feel bad that this family is going through this tragedy, however, we also know that McMath is medically and legally dead. Regardless of the many questions concerning whether McMath’s medical and legal death could have been prevented, if it was due to medical malpractice, or if it was due to an unexpected and uncontrollable events, we may also want the public to understand that McMath is medically and legally dead. We may even want McMath’s family to understand this. But we also have to ask ourselves, medical practitioners, and the public to understand the historical and cultural context in which the McMath family must make life and death decisions for their daughter.