Enactments of Belonging at the End of Life

Palliative care clinicians and others providing care and community at the end-of-life, including chaplains and interpreters, support the clinical and comfort needs of individuals and their families. These professionals also work to make meaning for people near death, particularly those who have faced marginalization throughout their lives. Based on fieldwork with doctors, nurses, psychologists, chaplains, an aesthetician, and a dietician in hospital departments and mobile palliative care teams in Paris and Chicago, I examine how these professionals go beyond the scope of their professional duties to enact belonging for patients who are non-anglophone and non-francophone, who are religious minorities, who face extreme financial precarity, and who grapple with uncertain immigration statuses, even as death becomes more certain. These enactments included negotiating religion and secularism, when a patient wanted readings of Sunnahs from the Qur’an when a chaplain could not be present; providing language interpretation for a terminal and progressive diagnosis, and language translation of immigration paperwork; and facilitating the ultimate return journey to die and be buried in one’s country of origin. These enactments of belonging when death is coming are fraught with uncertainty and struggle, as well as hope and promise. These enactments also signal new and long-documented ethical approaches to facilitating the final interval.

By Assistant Professor David Ansari
University of Illinois, USA