Bioscope

My project is situated at the intersection of design and healthcare. Design is now being recognized as a powerful tool for improving patient experiences and healthcare outcomes. My practice investigated 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. I constructed death theoretically and used the literature to develop a visual cartography of death, which is called the bioscope. The bioscope has many sites and can be used to facilitate conversations about death. Engaging with the bioscope can make us familiar with death and transform our understanding of it.

Most people in Australia die in the hospital. Therefore, the palliative care setting of the hospital allowed access to critical expertise and end-of-life care practices. I took the bioscope to the hospital to evaluate and develop it via codesign with palliative care staff practitioners at Alfred Health, including clinicians, nurses, and allied health professionals. Through the two codesign workshops at the hospital, the bioscope was evaluated and improved. The participant engaged codesign workshops could also have been situated 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. Insights from the participant engaged codesign workshops informed the content and making of the bioscope, which has been prototyped as a tapestry embroidered on fabric.

During the pre-workshop presentation the Alfred Health staff observed that there is no existing tool that can be used in social or hospital settings to do what the bioscope does. During the cocreation workshops the bioscope was used to situate conversations about death with palliative care physicians. One participant stated that “I personally think it's invaluable to have these discussions and I don't think we have them enough or more importantly we don’t possess all the skills to have them . . . this is a good sort of way of trying to explore all avenues to get to those fruitful discussions.” Another doctor observed “You’ve done so much reading for this . . . It’s unbelievable how much you’ve included. Really, it’s amazing!”

Using the bioscope with the clinicians, unmaking it, and remaking it has given it agency and depth. Despite my familiarity with the text on the bioscope, I continue to be surprised when new users engage with it. People who have lost loved ones or have experienced confrontations with mortality are drawn to the bioscope.

My project remakes death so that palliative care physicians, caregivers, and patients, inside the hospital, can talk about death in a more sophisticated manner. The bioscope has been designed in the hospital, but the intention has always been to situate its use outside the hospital, if not both inside and outside. 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 framing of my project was not limited to the hospital, instead the project is designed as a response to death at large. It can be used across cultural contexts and is relevant to everyone, because even if we are not interested in death, death is interested in us.

The transition from good health to end-of-life is a journey, which often requires wayfinding. To way find death, we can use a guide, signages, or a map. In palliative care settings patient navigators may serve as guides. My research project developed the bioscope as a map or a visual cartographic of death. A map gives us an overview of the terrain; it allows us to situate and orient ourselves; and it also allows us to find our way for one place to another. This means that the bioscope can help us become familiar with death, develop an openness towards it and most importantly cultivate an acceptance of it. Dr. Ira Bydock states that “Dying doesn’t cause suffering. Resistance to dying does” , therefore an acceptance of death is profoundly more desirable than a denial of it.

Additionally, the bioscope can support and be located within the broader framing of the death positivity movement. Since it was developed using the World Cafe, it embodies the codes of the conversational format. This project makes a methodological contribution through the development of a digitally enabled and modified World Café format which uses visualisations to situate conversation. More importantly, the bioscope is used to enhance conversations in Death Café and Death Over Dinner settings through the introduction of a visual system.

When the bioscope is on exhibit or display, outside of the World Café setting, it retains its ability to facilitate conversations about death and by virtue of this it is a place making artefact. As a cartography, a methodological toolkit, and a place making artefact the bioscope’s framework can be used to create engagement and autonomy across health care contexts. It can be remade to enhance patient experience and healthcare outcomes for maternity, diabetes, obesity, Alzheimer’s, dementia, and mental health, amongst others.

Nobody lives forever. The medical profession may prolong our life and relieve us of pain, but it does not prepare us for dying. Talking about end-of-life can help people understand their illness; help them understand what is going to happen later in life; reduce death anxiety; and help them in making decisions about their care, worldly affairs, and treatment plans .

The bioscope makes it possible to talk about death and dying in a sophisticated manner. The bioscope has successfully situated codesign enabled conversations about death with palliative care practitioners inside the hospital. The engagement with the clinicians has made the artefact sensitive to the concerns of patients at end-of-life. Inside the hospital the bioscope can enable holistic care and patient autonomy in decision making.

The bioscope has been designed in the hospital, but it also needs to be used outside the hospital to normalise death. I am already using the bioscope to situate conversation about death. I will take it to community centres, cafes, schools, churches, museums, and hospitals. I will cocreate new versions it. I will digitise it. I dream of starting the End Café which will be a permanent place where people can come when they need support or need to talk about death, dying and grief.

This project seeks to revive a social awareness of death. Death awareness can enable us to live more authentically, inspire us to be compassionate towards the dying and help us to accept our own mortality. My making practice seeks to make death more beautiful and accessible. I see the bioscope as a tool that makes it possible to create a better death. I hope that the bioscope will be adopted as a tool that helps greater engagement, awareness, and acceptance of mortality.