Bioethics Forum Essay
“No one was listening to us.” Lessons from the Jahi McMath Case
“It was like he thought we were dirt.”
This is how Jahi McMath’s grandmother, Sandra, describes having been treated by one of the doctors at the Oakland’s Children Hospital ICU. The family’s experiences were described in a recent New Yorker article that went viral on the internet and has reignited the decades-old debate on brain death.
The Jahi McMath case has bewildered bioethicists and physicians for four years. Having initially fulfilled all the standard criteria for diagnosis of brain death, Jahi then began showing, and has continued to show, signs of hypothalamic function. Court records indicate that eight months after her brain injury, Jahi underwent sexual maturation in the form of menarche and thelarche, a scenario unprecedented in medical literature.
While it has been argued that clinical criteria for brain death do not correspond to metabolic status or to a strictly biological definition of death, the Jahi McMath case has stimulated renewed interest in and discussion about the usefulness of the brain death construct for broader public policy.
Fifty years ago, in 1968, Dr. Henry Beecher, of Harvard Medical School, issued the first rationale for the concept of brain death. This month, the Center for Bioethics at Harvard Medical School will present a public conference that will explore the legacy of the 1968 report. The Hastings Center is a cosponsor.
Robert Truog and Franklin Miller, for example, have encouraged a more open acknowledgement that brain death is a useful social construction for formulating public policy, but that it is not a “coherent with any biologically plausible definition of death.” James Bernat, on the other end, acknowledges that while brain death may not adhere to a biological definition of death, it is the “most accurate biophilosophical representation of human death,” which remains critical to optimum public policy with “relatively inconsequential shortcomings.”
Regardless of how this debate plays out and whether we change our understanding of brain death, the McMath case raises an additional issue that led to this quagmire in the first place. It’s now clear, as we have learned more about the family’s experience, that emotional intelligence on the part of health care professionals and the practice of effective communication are critical in difficult cases like this one.
Emotional intelligence is the ability to understand your own emotions and the emotions of people around you. There are few instances as sensitive as the time of declaration of death. As such, when health care providers engage families or surrogates in conversations that involve explaining brain death, the situation demands that the providers demonstrate emotional intelligence.
“No one was listening to us . . . if Jahi were a little white girl, I feel we would have gotten a little more help and attention,” said Nailah, Jahi’s mother in the New Yorker article.
Even a cursory reading of the New Yorker article reveals how Jahi McMath’s family felt disrespected and their wishes dismissed – on every occasion. Certainly, the attending physicians did not intend disrespect, but it is how their actions and words were perceived by Jahi’s family.
Last December, the Boston Globe’s Spotlight team published a series of riveting articles that demonstrated that African-Americans (even in the medical mecca of Boston) suffer disproportionately from health disparities and that the medical community has not earned their trust. The reverberations of injustices inflicted upon African-Americans, including the Tuskegee Study of untreated syphilis remain. To ignore this context when having end-of-life discussions with minority families is to ignore reality itself.
Emotional intelligence on the part of doctors and other health care providers ought to consider questions such as: Who is the patient? What are the values of the patient and his or her family? How can I provide maximum comfort and benefit? How can I show respect for what they are worried about or care about?
Information and guidance on how health care providers can employ emotional intelligence to improve communication with patients and surrogates about end-of-life care is wanting. However, research provides some practical advice. Providers should start with establishing a supportive and empathetic relationship with patients and surrogates, starting with recognizing that illnesses impose severe stress on patients. Patients and surrogates should be encouraged to speak more openly about their fears and expectations, which will likely increase trust.
Providers should also use clear, direct, and simple language, and remain truthful about the prognosis of the case and any anticipated interventions. Providers should also facilitate open discussions about identifying desired medical care and end-of-life goals. Throughout these conversations, providers ought to remember that while a particular end-of-life case may be a routine affair in their profession, it is a life-altering episode for patients and their surrogates.
It is reasonable to believe that many cases that end up in courts (including Jahi McMath’s case) could have been resolved much earlier had both parties engaged in open and compassionate conversations.
When asked about their next step, Jahi’s grandmother, Sandra, said, “If the hospital had been more compassionate, would we have fought so much?”
Junaid Nabi, MD, MPH, is a Fellow in Bioethics at Harvard Medical School and a New Voices Fellow at the Aspen Institute. Twitter: @JunaidNabiMD
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