Expectation, emotion and the built environment: experiences of occupying hospital spaces as a loved one nears the end of life.

Abstract

Following a 3-year long research project that gathered 146 views, including those of palliative care patients, family members, medical staff, administrators, architects and government representatives, this paper explores the hypothesis that motivated this work; a hunch that the built environment affects us most during times of intense vulnerability. Of these 146 people, only a small handful could provide insight relative to the experience of occupying hospital spaces as a loved one nears the end of life. This article honours these stories and discusses them in relation to my own observations and experiences. The article is thus part observation, part participant interview, part autoethnography. Findings already published from the broader study have spoken to the importance of fresh air, access to nature, spaces for spending time with family, as well as alone, and ensuring people feel comfortable to enact rituals of home within the hospital. Yet the accounts discussed here are different. They speak to the subtle ways that hospital environments communicate when emotions are raw, and people are at their most exhausted. They speak to the ways that aesthetics are felt; and make evident that notions of homeliness must encompass far more at the end of life. A sense of welcome is not a nicety but a need, as is comfort, and what might be termed 'imaginative respite'-the idea that the built environment might somehow alleviate the focus on an unbearable reality. These accounts speak to the difficulty of navigating grief, and a hopeful expectation that the built environment might somehow soften the edges of this experience. In focusing on these stories, this article contributes a deeper understanding of what is really at stake when we design for palliative care.