‘We are encouraged to shape our own passing.’

Your book is titled ‘Shaping Dying’. Can we really ‘shape’ that experience? Or are you more concerned with the conditions surrounding it?

Eva Soom Ammann: Not only can we shape our death, we must do so. Our society’s way of thinking about death and dying is changing. As religion becomes less prevalent, there are fewer clear socio-cultural ideas guiding our approach to death. Secularisation and individualisation are two key trends fuelling this shift.

We live longer nowadays, and we die longer, too. This means that people can prepare for their own passing—indeed, they must. Both as a society and as individuals, we need to reflect more on what death and dying mean to us and how we wish to handle them.

Who exactly shapes the end of life for whom, and how?

Corina Caduff: Essentially, there are three groups. Those who are passing, their friends and family, and their healthcare professionals. Dying takes place in social, cultural and physical contexts. These settings consist of material aspects—rooms, care products, personal items—and immaterial aspects, such as wishes, language, interactions and social practices.

Our study explored the interaction between these three groups: how do they talk to each other? What social practices are there? What is the purpose and role of the care items used?

What inspired you to study end-of-life settings?

Eva Soom Ammann: We use this term, ‘end-of-life settings’ (German: Sterbesettings), to focus on the institutional environment in which people experience the final stage of their life. It has its own social, cultural and spatial dimensions.

This focus on settings allows us to work at an interdisciplinary level. Many disciplines—from healthcare to philosophy, sociology and the arts—have already produced a sizeable body of research on dying. Our project set out to combine their perspectives and gain new insights into the care settings in which dying takes place, especially hospitals.

Why does your project explore language and design as well as care and spirituality? Warum?

Corina Caduff: We wanted to broaden the scope of our research and consider a wide range of perspectives to gain a holistic understanding of end-of-life settings. The design of care products was understudied. Often, they are functional, which is useful for caregivers but not very comforting for patients. We have worked with designer Bitten Stetter, who developed innovative products for our project. For example, she designed a box that is easily stored in a hospital bed so that patients can keep their personal items, such as their mobile phone, within reach.

What are the outcomes of your project?

Corina Caduff: Besides the new care products mentioned earlier, Tina Brown, who is writing her dissertation on this project, has designed website and brochure templates for palliative care providers. They are markedly different to the stereotypical imagery normally associated with palliative care.

We have also produced the publication ‘Ein Letztes Buch’ (‘A Last Book’) in 2023, which contains excerpts from contemporary works on dying. Literature on the end of life has emerged as a new autobiographic genre since the 2010s: authors write about their own experience of dying, granting us access to a previously unheard repertoire of knowledge.
 

Eva Soom Ammann: We also investigated how the aforementioned care products affect end-of-life settings for carers, how palliative care uses them, and in which contexts palliative care services are provided. The integration of palliative care into a hospital environment is quite interesting: hospital processes and products are often heavily streamlined for efficiency, while palliative care seeks to take a more individualised and sensitive approach to patients’ needs.  This contrast gives rise to very creative ad-hoc solutions.

What practices related to dying have gained significance in recent years, and which have fallen out of use?

Corina Caduff: Growing medical advances allow us to delay death nowadays, which extends the process of dying. The longer the end-of-life phase lasts, the more we are encouraged to shape it for ourselves and our loved ones and find the best way to say goodbye.

Many people no longer have religion in their life. What role does it play in dying?

Corina Caduff: Religion and spirituality regain their significance towards the end of life. Certain questions become more pressing: “Where am I going? Is this truly the end or will there be something beyond?” The modern, secular world does not offer any universal religious ideas to turn to when the end is near. Rather, people take an individual approach to spirituality by picking and choosing what feels right at the time, sometimes only for a while. Individuals have to face themselves.

Can we define a ‘good’ death?

Corina Caduff: An ethically difficult question—after all, who even has the authority to answer it? From our research perspective, a ‘good’ end of life is actively shaped, with the dying person, their family and their carers working positively and creatively together. Dying is always also living.

Why did you decide to publish a book on this topic?

Eva Soom Ammann: We wanted to share our research with a broader audience and engage with the public. Rather than just publishing academic articles, we have made our books accessible to a general readership. In our 2022 book ‘Kontext Sterben’, we invited guest authors to explore our views and their own. Now, in ‘Sterben Gestalten’, we discussed our research findings in an interdisciplinary and easily accessible way. We want our book to make a contribution to the public conversation about end-of-life care.

What hopes do you have for your new book?

Corina Caduff: We hope to communicate that dying does not have to be a passive, wretched experience. There are ways to shape the end of one’s life actively and make it meaningful and dignified.

‘Sterben Gestalten’, book vernissage, 24 October, 7.30–9pm, Église Française, Bern

A free PDF of ‘Sterben Gestalten’ is available here.