Is the built environment adequate for times of intense vulnerability and grief? Rebecca McLaughlan argues that we need to do better in meeting the very specific needs of people experiencing palliative care spaces, whether patients or close friends and family members dealing with the gravity of their impending loss.
Of the four weeks immediately preceding my mother’s death, she spent three of those on the oncology ward of a busy metropolitan hospital. It was May of 2013. Two days into her admission, I was walking down the corridor when I discovered a seating alcove. It was located between the entrance to the visitor’s bathroom and the lift lobby, just out of sight of the lift doors but less than three steps around the corner. As an architect, I’ve long been a fan of intimately scaled alcoves, and while this one was not particularly intimate, in its scale or location, or even the materials with which it was furnished (and granted, furnished may seem too extravagant a word for bright orange vinyl), I nonetheless found this gesture unusually generous. At least to begin with. An empty alcove in which to take some time out, a rare snippet of space not dedicated to the functional goings on of the hospital.
This opinion changed the day I encountered a woman sitting in that alcove – although she wasn’t sitting so much as falling apart. Some of the details are hazy. She may or may not have been holding a phone to her ear, but the noises she made were more animal than human. I’ve never seen another human so distraught and in what struck me anew as an unbearably inhumane space. Artificially lit, with pale yellowy-cream walls, barely comfortable built-in seating in that ghastly bright orange; the only outlook, a view of two toilet doors. That was the first time it occurred to me that the built environment needs to do more. That this is unacceptable.1
Rebecca McLaughlan
That the built environment impacts us most during times of intense vulnerability is a hunch I’ve long carried. It motivated my PhD on psychiatric mental hospitals and, more recently, a three-year ARC-funded research project that gathered the views of 146 people – including patients, family members, medical staff, administrators, architects and government representatives – about how we might design better for palliative care (not to mention the three different university design studios where I engaged the help of students to work through these issues).2
Palliative care has a distinct ethos that should permeate both the model of care followed by staff and the architecture responsible for holding within it so much emotion. My mother’s oncology ward held nothing of this sensitivity. And so, for years following this experience, I obsessively gathered written accounts of experiences at the end of life. Those available were predominantly by writers themselves, discussing their own experiences as patients, or of losing loved ones: Susan Sontag, Joan Didion, Georgia Blain, Katie Roiphe, Joshua Codey, Paul Kalanithi, Cory Taylor. 3 I did this in the hopes of obtaining a single passage that captured the emotional baggage that I instinctively felt adhered to that ubiquitous combination of white walls, grey vinyl flooring, fluorescent lighting and stainless-steel grab rails. Surprisingly little of the physical environment is observed within these texts, suggesting that perhaps patients do not feel the weight of the built environment in the same ways that family members do.
I was more than two years into my research project and nearing the end of my conversations with patients and family members, when I stumbled upon a piece of writing by Karen Bermann, an American architect and educator who wrote an account of sitting with her mother as she died. In it she described a hospital environment that was unyielding in the face of her distress:
First I sat on the windowsill and laid my forehead against the cold glass… Then I sat on the floor. Then I lay down on the floor… I sat crunched up on the little metal ledge under the phone. There was no place to rest… when we were waiting… when we weren’t talking, when we weren’t pacing the hall alone … when we weren’t crying together, or crying alone … [when] we weren’t lying curled up on the too-short uncomfortable bench-like couches with our jackets over our heads to keep out the fluorescent lights … my sister and I watched the clock.4
Karen Bermann
The broader research project confirmed 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.5 Yet the passage cited above comes from a more recent and deeply personal article, one that recounts the stories of five individuals (including my own) whose family members were at the end of life. These five stories speak to the subtle ways that hospital environments communicate when emotions are raw, and people are at their most exhausted. It speaks to the ways that aesthetics are felt, to the difficulty of navigating grief, and the hopeful expectation that the built environment might somehow soften the edges of this experience.
It also sheds light on what might be considered the worst-case scenario for designers; one where the hospital becomes a sort-of makeshift home, while people’s actual homes come to resemble a base to which they return for a change of clothes, between the hospital and the office – or the hospital and the hospital – sometimes to sleep, sometimes not. Yet it was only in my experience of presenting these project findings to various audiences, that I came to understand how the practice of putting one’s own life on hold as a family member nears the end of life is not widely talked about and, correspondingly, is seldom adequately designed for. These five stories articulate the earnest expectation I heard time and time again from families, that palliative care spaces should “feel different” in order that they might respect the gravity of one’s impending loss. These stories lend weight to the hypothesis that, during times of intense vulnerability, the built environment indeed takes on a significance beyond what we might ordinarily expect.
Images: Left, the corridor of a traditional/ typical palliative care ward (image by author). Right, a corridor in the Prince and Princess of Wales Hospice, Glasgow, designed by Ryder Architects (image by Keith Hunter, 2019).
This article draws on a longer essay published in BMJ Medical Humanities, “Expectation, Emotion, and the Built Environment: Experiences of Occupying Hospital Spaces as a Loved One Nears the End of Life”. It is well worth reading the full piece too!
Dr Rebecca McLaughlan is a Senior Lecturer at the School of Architecture, Design and Planning, The University of Sydney; and a NSW Registered Architect. Her research explores the ways that architecture embodies care by examining lived experiences and perceptions of healthcare environments, and the processes through which architects create (and advocate for) built environments that extend care. Her research on palliative care was funded by an Australian Research Council DECRA Fellowship (2019–2023).
Footnotes:
- Rebecca McLaughlan, “Expectation, Emotion, and the Built Environment: Experiences of Occupying Hospital Spaces as a Loved One Nears the End of Life,” BMJ Medical Humanities, 2024.[↩]
- Rebecca McLaughlan, “One Dose of Architecture, Taken Daily: Building for Mental Health in New Zealand,” PhD Dissertation, Victoria University of Wellington, 2014.[↩]
- Georgia Blain, The Museum of Words: A Memoir of Language, Writing and Morality, Melbourne: Scribe, 2017; Joshua Codey, Sic: A Memoir. London: Bloomsbury, 2011; Joan Didion, The Year of Magical Thinking, London: Fourth Estate, 2005; Paul Kalanithi, When Breath Becomes Air, London, England: Vintage, 2017; Katie Roiphe, The Violet Hour: Great Writers at the End, London: Little, Brown Book Group, 2016; Susan Sontag, Illness as Metaphor, New York: Farrar, Straus & Giroux, 1978; Cory Taylor, Dying: A Memoir, Melbourne: The Text Publishing Company, 2016.[↩]
- Karen Bermann, “Elements of the Month of Our Dying” n.paradoxa 7, 2001: 49–52, pp. 49.[↩]
- Rebecca McLaughlan and Kieran Richards, “Realizing Homeliness in Palliative Care: Inpatient and Family Perspectives on Designing the Built Environment” Design for Health 7 (2), 2023: 138–157[↩]
