I had purchased “Dreams of My Father” when it first came out, but it disappeared in my embarrassingly large stash of “to read” books in my office. During a deep clean, I discovered the book and read it in a few days.
Barack Obama reflects that his experiences in Chicago were not much different from his time in the Indonesia and his visits to Kenya; wherever he traveled he recognized the impact of Anglo colonialism. Struck by the seemingly inescapable disparities that people of color have experienced globally, my reading turned to discovering ways I can be mindful of how to decolonize my palliative care practice.
The philosophy of palliative care is to minimize suffering, raise the voice of the person living with serious illness, and honor a person’s goals-based values. But is this always concordant with the identity, cultural and spiritual values of the person living with serious illness? The origin of palliative care is through the lens of Western healthcare providers, and hospice founder Dame Cicely Saunders was a white woman from Great Britain, one of the world’s lead colonizers. Indoctrination into the palliative care philosophy means that we as providers are assimilated into the culture. As with colonialism, we as palliative care community specialists can feel so passionate about our work that we “know best”, and try as we might, we still bring ourselves and our biases to our interactions with patients. Although we are often advocates for patients who are marginalized, and our intent is to help, the impact of our actions can further oppress when we take the role of the hero/rescuer.
Several families come to mind when considering dominant culture in relation to the provision of palliative care. A young man transported to our hospital from an indigenous community out of state for a one in a million possibility of liver transplant; a woman whose values are to be kept alive on a ventilator/other life support and die in the hospital with family, even if she is perceived to suffering by hospital staff; a young father with preschool aged children and speaks primarily Spanish is rushed for discharge with charity hospice because he does not have insurance to provide outpatient care for possible curative treatments. In all these cases and more, the disconnect between the hospital values, palliative care values and the patient/support system values can be distressing.
The 2022 ecancer article below, written by Christian Ntizimira, Mbonyinkebe S Deo, Mary Dunne and Eric Krakauer, is an effort to shift the paradigm of colonialism using the idea of Ubuntu, or how we are seen through the group or others’ eyes and hearts. In an effort to “standardize” palliative care on the international stage, palliative care has actually alienated those who have different perspectives than the Western cultural context. Although we use symptom management as a primary tool for palliative care intervention, it is equally or more helpful to incorporate the nuances of each person’s culture, language, spirituality, and individuality as related to their support system. Details and perceptions matter much more than medical facts in the chart.
How do we increase awareness and maximize the ways in which palliative care can provide the best care for patients? I don’t have all the answers; the questions are so complicated. But one way I will move forward in my practice is to spend more time in quiet, listening to what is being said and left unsaid, and giving space for curiosity, asking vs telling, and continue to learn from reading, relationships and reflecting on my mistakes. I will continue to investigate and receive feedback about my blind spots in my interpersonal vision that might lead to more equitable palliative care.
May 14, 2024