“That’s what hospice is supposed to do”: How U.S. hospice care staff bridge philosophy and institutions

Hospice founder Cicely Saunders wrote that “the dignity and worth of each individual patient [are] central to Hospice philosophy—an idea closely tied to anthropological personhood (Saunders and Clark 2002). As dying in hospice becomes an increasing reality of life in the United States, we must grapple with how the ideals, costs, and challenges of hospice care play out in the healthcare system. The institutional structures meant to ensure a ‘good death’ (while protecting the interests of the state) can fracture care of the dying. As hospice staff work within and around these structures, they build meaning in care strategies that restore personhood and engage a social understanding of death. My fieldwork took place at Amicus Hospice, a mid-sized private hospice with locations spread across the midwestern United States. The first section of this thesis covers the construction of a “hospice philosophy” rooted in the history of the movement. In particular, I examine the ways hospice’s contrast to an image of “unfeeling” biomedical institutions plays out in the care decisions of Amicus staff. Section two dives into the way staff negotiate contested authorities of place while out in the field. Delivering hospice within patient residences can be a way of restoring personhood at the end of life but can also open up possibilities for ‘bad’—or even burdensome—death. The third section reflects on my own experiences volunteering with grief care, especially as they relate to the question of whom hospice care is ‘for.’ The understandings of placemaking, grief care, and identity-formation developed through this work can be used to build a future for hospice care