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The Bioscope: Codesign Enabled Conversations About Death With Palliative Care Practitioners

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posted on 2024-05-14, 03:04 authored by Chetan Shastri
From the moment we are born, we are on a trajectory towards death. Our existence is conditioned by our disposition towards death. Over the past 100 years death has migrated from a socio-cultural setting to the hospital. By claiming death, the hospital has claimed knowledge of it. Death and dying are profoundly personal experiences and require a holistic approach to care including psychological, personal, cultural, social and spiritual care. While doctors can prolong our life and help manage pain, they do not prepare us for dying. In the hospital, death is seen as the failure of the doctor to repair the body, as opposed to a natural phenomenon. The way we construct death in the 21st century may be described as banal and lacking in originality. Its medicalisation has made death undesirable; there is stigma attached to death and talking about it is taboo. As we no longer see death or talk about it, we have lost the socio-cultural know-how of dealing with it. The transition from good health to end-of-life can be confronting and difficult to accept. The invisibility of death impacts our ability to accept and confront our own mortality. Meaningful discussions about death and its implications are important to plan for end-of-life. The aim and intent of my creative project was to support better experiences at end-of-life and to enable an evolved awareness of death. Death awareness can inspire us to be compassionate towards the dying, help us to accept our own mortality, and enable us to live more authentically. My practice-based research is situated at the intersection of design and healthcare. Design is now being recognised as a powerful tool for improving healthcare experiences and outcomes. My practice investigates what design can do, on the topic of death, inside the hospital. My methodological approach included literature reviews, ethics, codesign and a creative/making practice. Death does not exist, therefore it needed to be constructed. My research constructed death theoretically through studies of culture, philosophy and the social practice of death. Simultaneously, I also used the literature reviews to develop a visual cartography of death, which I now call the Bioscope. Additionally, the Bioscope was designed as a tool to facilitate conversations about death and can be used both in the World Café setting or outside of it. Engaging with the Bioscope can make you familiar with death and transform your understanding of it. Most people in Australia die in the hospital. Therefore, the palliative care setting of the hospital allows access to critical expertise and end-of-life care practices. I took the Bioscope to the hospital to evaluate it and develop it via codesign with palliative care staff practitioners at Alfred Hospital, including clinicians, nurses and allied health professionals. The codesign projects could also have been developed with patients or caregivers. Patients at end-of-life (and their family) are vulnerable and compromised as research participants. I worked with palliative care staff because they are accessible, have expertise on end-of-life concerns and are the least vulnerable stakeholder group. Through the two codesign workshops at the hospital, I investigated what a cartographic mapping of death should look like. Insights from the participants in the codesign workshops informed the content and making of the Bioscope. The Bioscope has been prototyped as a tapestry embroidered on fabric. The four-part backdrop of the Bioscope allows it to be assembled, displayed, and used in various formats. It has 40 text-based sites and 27 ornamental icons that provoke conversation. The assemblage is held together by magnets. It collapses into a neat bundle for storage and transit. The Bioscope enables placemaking, engagement and interaction. It restyles the banal into something that is aesthetic and approachable. My practice remakes death so that physicians, caregivers and patients, inside the hospital, can talk about death in a more sophisticated manner. The Bioscope can also be used outside the hospital, including at community centres, cafes, schools, churches, cemeteries, residential aged care facilities and at home. The Bioscope can empower authentic living, enable acceptance of mortality, and inspire compassion towards the dying.

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Doctorate by Research

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© Chetan Shastri 2023

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Design

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