One Saturday morning, an ICU physician called and asked me to talk to a family with whom the team was having difficulty establishing care goals for the family’s loved one. The team knew I’d recently seen the patient for a neurosurgery consult and the family trusted me. The patient was a young Black man who had suffered a cranial gunshot wound. When I reached his room, we listened to the rap music the family had playing for him while I checked his neurologic function.
I told his wife I couldn’t imagine what she was going through and promised I’d be her excuse to keep her in-laws away for a bit, if she needed it. She laughed. I told her what I thought about her husband’s poor neurologic prognosis. I explained what I feared life might look like for her and her family if they continued with life-sustaining interventions. I explained what comfort care might look like. For the next few days, I became an interpreter, as the team called me back to conduct family conversations.
Why could I establish trust that White clinicians could not? Was it just the color of my skin? I believe that in this patient, I saw someone I knew, a story I recognized. I imagined him at barbecues and in his grandmother’s living room. I saw him in my family and my community. I saw him, and his family knew that.
As a biracial neurosurgeon, I’ve had diverse life experiences. I’ve seen the circumstances that can lead to all different life paths and understand that many of them involve love, good intentions, and community. This experience is what I brought to the table.
Few U.S. physicians share the experience of being Black while caring for Black patients. Black Americans make up 12.7% of the population but only 5% of physicians.1 Underrepresentation probably explains part of the disconnect between physicians and Black patients.
But there’s more to it. I recently coauthored a study revealing that White patients are nearly twice as likely as Black patients to have life support withdrawn after severe traumatic brain injury (TBI).2 I can imagine numerous reasons why end-of-life discussions may differ by race. Decision making in TBI often requires quick consensus between clinicians and families who have just met. It requires trust, and Black Americans trust the health care system less than White Americans do. According to researchers who studied Black caregivers for patients with dementia, for example, “African Americans are often mistrustful of the overall healthcare system because of several disparities: they are often underserved with dementia care and education.”3 Why would Black people trust a system that gives us poorer-quality care?
Lack of trust affects decisions. In the caregiver study, increased trust in clinicians was associated with decreased likelihood of pursuing feeding-tube placement.3 If a doctor cannot establish trust with a Black family struggling through a crisis, the family may think differently about treatment decisions.
End-of-life planning also varies by race. In an Oregon focus group involving Black participants, only 11% reported having living wills, as compared with about 25% of the general population.4 Although participants prioritized quality of life, it’s challenging to determine what quality means for someone who has been incapacitated by a TBI but whose wishes haven’t previously been known.
Poor communication between clinicians and even between family members also prevents Black Americans from deciding to withdraw life-supporting treatment. The resistance the ICU team encountered to discussing care goals is reflected in related research. A study of Black, White, and Hispanic surrogate decision makers revealed that Black persons felt doctors should be “more approachable, less ‘abrasive’ or ‘intimidating,’ and more ‘sensitive’”; they also reported greater will to “do everything” for loved ones and commonly referenced faith and religion.5
It’s often impossible to find a physician like me to participate in a goals-of-care conversation with a family of similar background; and even with similar backgrounds, systemic or personal factors may inhibit development of trust. It’s important to note that the goal is not to have more Black families withdraw life-supporting treatment, but rather to determine what quality of life means for the patient and to pursue it. If failures of trust, planning, and communication hinder this process, we must address these barriers. Increasing trust is challenging, but it may start with movements like the one we’re seeing on the news these days — reflecting a burgeoning effort to better understand what it’s like to be Black in American society.
Recognition by clinicians of Black Americans’ history of resilience and depth of culture, faith, and community may reduce feelings of distance and strengthen trust. This effort coupled with improved patient–clinician conversations could bring Black families closer to the goal of quality of life they seek for their loved ones. Ultimately, our goal should be to deliver excellence in care at every step of the health care journey.
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July 21, 2020 at 11:00PM
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The Goals of Care — Is There a (Black) Doctor in the House? - nejm.org
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