Bellamy A, Clark S, Anstey S, The dying patient: taboo, controversy and missing terms of reference for designers—an architectural perspective, Medical Humanities Published Online First: 16 November 2020. doi: 10.1136/medhum-2020-011969

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ABSTRACT

Contemporary society has grown seemingly detached from the realities of growing old and subsequently, dying. A consequence, perhaps, of death becoming increasingly overmedicalised, nearly one in two UK nationals die institutional deaths. In this article we, two architectural scholars engaged in teaching, research and practice and a nurse and healthcare scholar with a focus on end-of-life care and peoples’ experiences, wish to draw attention to a controversy resulting from a paucity in current literature on the terms of reference of the dying ‘patient’ as we navigate the future implications of the COVID-19 pandemic. This contributes to a relative lack of touchstones for architects to refer to when designing person-centred palliative care environments. Unlike common building types, architects are extremely unlikely to have lived experience of palliative care environments as patients; and therefore, require the help of healthcare professionals to imagine and empathise with the requirements of a person dying away from home. This paper includes a review of ageing and dying literature to understand, and distil from an architectural perspective, who, design professionals, are designing for and to remember the nuanced characteristics of those we hold a duty of care toward. We ask readers to heed the importance of accurate terms of reference, especially when commissioning and/or designing environments of palliative care. Furthermore, we put forward an appeal for interdisciplinary collaboration to develop a framework for codesigning positive experiences of person-centred care and environments at the end of life.

Link: https://mh.bmj.com/content/early/2020/11/18/medhum-2020-011969

Presented and published by: AHRA Young Researchers Symposium 2020, Newcastle University, UK, Apr 20

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Architect Niall McLaughlin states successful design stems from an ability to “…imagine what it is to be someone else experiencing a place. This intuition is the cornerstone of an architect’s role.”[1] Through architectural education and practice, first-hand phenomenological reflection is encouraged to foster this intuition. By using the body as a device to record atmospheric and sensory phenomena’s of our built environment, recollection of personal experience can help inform the creation of space.

Traditional academia, however rejects this approach and instead encourages defined space between the ‘researcher’ and the ‘field’, asserting that the removal of the subjectivity of the researchers own positionality is evidence of rigour that protects against bias. In this paper, however, the author argues of the benefit that emotional practice and the reflexive ‘self’ can bring to architectural research through the use of auto-ethnography.

This paper will present analytic auto-ethnography as used to explore the lived experience of the in-patient hospice, a building typology for palliative care, where the author acts as both ‘insider’ and ‘outsider’. It will draw on the experience of the hospice as a daughter, recalling memories of the hospice the author stayed in during the last week of their Mother’s life, and as a researcher, reflecting on the undertaking of ethnographic research at a hospice case study and the implications of these experiences on future architectural practice.

Described as being both “a doorway and a mirror”[2], auto-ethnography highlights the ‘self’ as an intrinsic part of the research field. This offers architectural research a method in which to critically synthesise spatial practice with social authenticity and human emotion in a way that is inaccessible to typical desktop research methods. The research uses annotated architectural drawings and models “…to take us somewhere we couldn’t otherwise go to…”[3] enriching the understanding for other

[1] Niall McLaughlin Architects, Alzheimer’s Respite Centre, 2016, http://bartlettdesignresearchfolios.com/alzheimers-respite-centre/, 15

[2] Schwalbe, M. (1996). The mirrors in men's faces. Journal of Contemporary Ethnography, 25, pp.58-82.

[3] Behar, R. (2012). The Vulnerable Observer: Anthropology that breaks your heart. Boston: Beacon Press.

2019

Workshop Leader, Revolutionary Clinicians, Hospice UK

Tensions: home vs institution
Presented at: Royal College of Art OPEN Emotional Practices digital exhibition

2018-19

In Retrospect: on auto-ethnography and self-reflection
Lecture at Welsh School of Architecture, Cardiff University

2018-19

Patience and accessing patients: ethics and honing a sensibility toward hospice.
Lecture at Welsh School of Architecture, Cardiff University

2018

Where do you want to die?
Presented at: RIBA Research Matters Conference 2018, Sheffield, UK, 18 Oct 2018

Presented at Marie Curie Annual Conference 2018, London, UK, 17 Oct 2018

2018

Poster session presented at the Materialities of Care - Buildings in the Making A Sociological Exploration of Architectural Design

Paper presented at: STS(In)Sensibilities, 4S Society for Social Sciences Annual Conference, Boston, USA, 30 Aug – 2 Sep 2017

This paper explores the role of design and architecture within palliative care environments to influence a positive experience of dying. As more demands are placed on in-patient hospices, many providers look to rejuvenate their facilities. Can multi-sensory, tactile approaches form rich comforting environments for those at the end of their life?

Formed of three qualitative case studies that unpick the subjective nature of the topic; local, regional and national scales develop narratives exploring the successes and failures to promote personal dignity. Beginning with an auto-ethnographic account of the authors time in a local hospice where the author’s Mother passed away; to primary data gathered through interviews with users from a regional hospice before a concluding analysis of a new build hospice.

The notion of ‘home’ is subjective reality experienced differently by all - however dignity within the but environment relies on a spatial hierarchy revolving around the needs of the dying person. This study highlights architectural strategies, from urban design to bespoke furniture, that mediate the details of domestic and hospital architecture by encouraging interactions of the dying person beyond the boundaries of their bedroom. Both socially and sensorially to promote a good life right to the very end - maintaining a connection between the dying person and the external world. The study draws attention to how rationalising medical environment and infrastructure offers a greater sense of trust to the dying person at the end of their life; markedly more personable than the environments of an acute hospital.

A Place of Mortality: A comparative study investigating the role of the architecture of hospices in a dignified death

A comparative study investigating the phenomena of being able to dwell within in-patient hospice environments, and the role of the architecture of hospices in a dignified death. This dissertation became a pilot study for my PhD research; it explored three distinct case studies of hospices that varied in design through their scale, from secluded rural location, a local hospice, and a new-build of national acclaim.

The Tactility of Nostalgia: The relationship between tactility and memory as perceived in the Granary Building, Kings Cross

An investigation in sensory perception and the relationship between tactility and the construction of nostalgia and atmosphere within contemporary spaces and buildings – in particular the extension of the Granary Building for Central Saint Martins. This dissertation introduced me to qualitative research methods, in particular participant observation and interviews. This marked a revelation in my approach to architectural research; that of the experience of the end user of a building or space.