Self-determined death: at the limit of our possibilities
14.12.2023 Dying is rarely a topic in everyday life. Eva Birkenstock and Corina Caduff explain why this is the case and how research can provide guidance in today's world.
Our society has a complex relationship with death and dying. On the one hand, death is very present: there are countless murder thrillers and action-packed series with deaths galore, not to mention reality TV shows with dying people, death blogs or festivals celebrating death.
And yet many people have a shock when they are confronted with death in their personal lives. “Most people don’t know much about what happens during death or the suffering it causes”, says Corina Caduff. The Vice-President Research studied various authors and their take on the subject for BFH’s “Sterbesettings” (Death Settings) project.
The dying are invisible
The shock experienced by many is no coincidence. Despite the omnipresence of death in entertainment and in the news, people tend to suppress the idea of death in their own lives: those who die disappear from our social daily lives – often long before their physical death.
Advances in medicine, hygiene, social security and peace have nearly erased death from our lives. “The fact that we can suppress death-related thoughts to such an extent is a great achievement,” stresses Eva Birkenstock, who deals on a daily basis with ethical issues surrounding the end of life in her research at BFH. “We need to readjust this and recognise mortality as a vulnerability that connects all people and as a source of existential solidarity,” she adds.
Too much freedom, too much coercion
Most people wish to spend the end of their lives at home, in their familiar surroundings. This can also be a good thing for their relatives. Corina Caduff: “When death is integrated into life, it becomes less frightening.”
When you allow your loved ones to die at home, you get a chance to know them differently and have memories to hold on to. Dying people are often very honest and open. “When you talk to a dying person, you realise that genuine human closeness alleviates suffering,” says Eva Birkenstock.
Figures on death in Switzerland
In the course of her work, Corina Caduff has noticed time and again that dying people lack guidance on how to deal spiritually with their transience: “In a world of patchwork religions, you have to find your own interpretations.” Spiritually, people are faced with an abundance of options that they can easily chose from or discard. “Nowadays, stable consolation is rarely achieved through spiritual considerations”, explains Corina Caduff.
The situation can be quite different when it comes to the healthcare of the dying. Having studied the literature in this field, Caduff finds that dying patients are offered far too little active options in today’s healthcare system.
Self-determination at the end of life
Caduff and Birkenstock both agree that this must change. “Concerning end-of-life decisions, it would be good to concentrate on what can be done, in other words on people’s freedom,” explains Eva Birkenstock.
A wide range of solutions have been developed in the discipline of palliative care. The aim is always to ensure that dying people can shape themselves the end of their lives and be guaranteed a high quality of life. In addition to medical care, this includes counselling and spiritual support.
Card deck on assisted suicide
Death and the prospect of dying raise questions to which there are no easy answers. Kathy Haas, BFH alumna and research assistant at the Institute on Ageing, has worked with designer Selina Fässler to create a card deck on assisted suicide. Kathy Haas contributed valuable scientific groundwork with her master’s thesis. Selina Fässler had already developed card decks on other taboo subjects as part of her bachelor’s degree. With their assisted suicide card deck, the two women show how to break the silence on this difficult subject. Kathy Haas wrote the texts in a clear and simple language, and Selina Fässler drew the illustrations.
Eva Birkenstock is convinced that “as a society, we should ensure that dying people can exercise their personal freedom to shape the end of their lives.” So if someone requests assisted suicide, their wish should be respected, provided other interests can be ruled out. “In a secular state, our lives belong to us and we are allowed to want to quit life,” she argues. But this does not mean that such a choice or the decision to back it is ethically easy.
Science as a common basis
Eva Birkenstock is convinced that honest, fact-based and knowledge-based communication on research on the end of life can help reduce the fear of dying. It encourages people to come to terms with their own finiteness and vulnerability.
However, she also emphasises that our desire to shape our own death remains a privilege that can be taken away from us at any time due to circumstances beyond our control. ”Despite all the planning, the precautions and the preparation around death, we reach here the absolute limit of our possibilities.”