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Visiting a Foreign Land: Cultivating Cultural Humility in Pediatric Palliative Care

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Culture can be defined broadly as the web of meaning in which humans live. Our experience of culture is fluid and informed by a wide set of variables including (but not limited to) age, gender, class, race, ethnicity, religion, education, and sexual orientation. Any one health care encounter can be understood as a meeting of multiple cultures. We can then ask the following question: What happens in these cultural meetings among health care professionals, children, and their families?

The children and family members we care for bring their cultures with them when they enter the medical system. When a child with a life-threatening illness is admitted to the hospital for the first time, that child and his/her family are bringing their own cultures into a new and foreign land, where they are confronted with medical language, customs and traditions that are unknown to them. They will of necessity spend a great deal of time and energy absorbing this new culture, learning to speak the language, to follow the customs, and to respect the traditions. They will work very hard to adapt to this culture, and to abide by its rules, values, and expectations, if only because so much is at stake. Yet it is a land they did not wish to visit, and they dearly hope to return to their own familiar worlds as soon as possible.

It may be helpful to remember that children and families enter this culture of medicine "against their will"; that is, they really do not have a choice about taking this trip, and they do not, for the most part, wish to stay any longer than necessary. Also, it may be useful to appreciate the power and authority that the medical culture exerts in the lives of very sick children and their families. The family's culture is routinely made largely invisible when they enter this medical world.

Health care professionals, in defining our own cultural identities, draw from the same multiple variables as the children and families we care for. But we have also spent months, years, or decades being educated and socialized into the "culture" of the health care professions. Whether we are trained as physicians, nurses, social workers, psychologists, chaplains or child-life specialists, we have learned particular ways of thinking about, understanding, and responding to the needs of children and families. These ways of knowing combine with the constellation of variables already mentioned to comprise the cultural gestalt we bring to our interactions with children and families.

When viewing families through the lens of culture, health care professionals confront two major challenges. First, we face the challenge of helping children and families adapt to this strange new land they have entered by translating medical language and customs in ways that will make sense to them. Second, we face the challenge of making visible the child and family's own cultural reality by learning about it, supporting it, and validating its integrity and centrality in coping with illness, loss, and death.

If we return to the idea that all health care encounters involve the coming together of multiple cultures, then it is important for health care professionals to be curious, aware, and reflective about this coming together. The term "cultural competence" can convey a misleading message, if competence is seen as the mastery of a fixed set of "facts" about various cultural groups. To approach our work with a cultural lens requires a different view of competence, one which embraces lifelong learning along with an unrelenting attitude of openness and curiosity in relation to the ways in which all children and families (even those that appear familiar) are unique and different from ourselves.

The term "cultural humility"(1) captures the values and attitudes that we as health care practitioners need to cultivate in our work with children and families. Cultural humility involves the curiosity and motivation to understand the web of meaning in which children and families live, and the reflective capacity to examine our own cultural values and assumptions. It requires a commitment to appreciating similarities and differences between our own culturally shaped goals and priorities and those of the children and families we care for. It requires as well an obligation to "reign in" the power and authority of the medical world when collaborating with children and families in treatment planning and decision making, so that the voices of children and family members can be fully valued and heard.

David Browning, MSW, BCD, CT

(1) Tervalon, M and Murray-Garcia, J. (1998) Cultural humility versus cultural competence: a critical distinction in defining physician training outcomes in multicultural education. Journal of Health Care for the Poor and Underserved, 9 (2), 117-124.

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