Jessica Zitter has gotten to be one of my favorite end-of-life writers. Watch her great video called “Extreme Measures”! She also writes some New York Times essays that I use in our Palliative Care program. She wrestles with issues of justice and the use of technology at the end of life – since she faces such ethical dilemmas daily in her dual roles as a Critical Care doc and palliative care specialist. In June she wrote an essay called “The Never-Ending Mistreatment of Black Patients.” She asks the uncomfortable question: At the end of life, do African-Americans get too much medical care?
Her patient is familiar to all of us who work in an ICU. He’s elderly, terminally ill, unable to be weaned from the vent….and African American. Trach? Terminal extubation? Choices that surprise her unprepared patient and son, neither of whom realize he is this sick. “No trach” says the patient, but then comes that question the son asks in the hall outside the room. Sometimes it gets asked and sometimes I, like Zitter, get a feeling it is a silent part of the conversation: “Are you sure you’re not doing this to save money?”
Healthcare disparities are real fact in our healthcare system. Usually we hear about the studies showing less pain medicine, less aggressive control of high blood pressure for minority patients. Some of my richest discussions with MSPC students are triggered by stories of the inequities that they have seen for their patients. But those of us in palliative care sometimes see a paradox at the end-of-life – i.e. patients and families who don’t trust clinicians and want to keep going, afraid that they aren’t getting the level of care that others would get. Particularly if we have white coats and white skin. Are we gatekeepers or caregivers? Has the ICU called a PC consult because they think their loved one…who has a different color of skin, who is undocumented, who was born elsewhere…just shouldn’t use up more of the healthcare resources? Zitter talks about her reflex to defend her own fairness by saying “Let’s keep going.” But is that capitulation something that just assuages the conscience of the clinician?
And can you blame our patients, in this world where public fear of “the other” is so often in the news? Zitter talks about how she sometimes can craft bridges – with her AA chaplain, by joining in prayer with patients, by seeking out threads of shared experiences, to connect with those who are different. By not running away from the tension. It takes commitment to help our African American patients see us as allies if we are white, particularly when we want to discuss choices like “comfort care.” Zitter asks us to “face our discomfort” and help our patients know we want to travel their journey with them.