All of us die - but the question is how? Today we have a greater say in the way our lives end than ever before. Nevertheless, most people do not die where they would like to. The book "Das Lebensende in der Schweiz" (End of life in Switzerland) reflects on what is currently known about dying in Switzerland. As a conclusion: palliative care needs to be strengthened, but there are still limits to the extent to which people can plan and control the end of their lives.
Thanks to growing life expectancy and medical progress, people are able to push death back until they reach an old age. While sudden death has not disappeared, many people today have to contend with an end-of-life phase that starts with disease and frailty, but only ends with death years later. The end of life raises pressing questions for us as individuals: How long do we still want to live and in what circumstances’ How do we want to die? What decisions need to be made? And, not least of all, where do we want to die?
At the same time, doctors, carers, lawyers and sociologists are all thinking about the end of life from a theoretical and practical perspective. Up to what point is someone still capable of making their own decisions’ What rights do individuals have? Who decides when to end life support? Is it possible to plan for decisions in good time? And what does "in good time" mean in this context?
Taking stock from various perspectives
To mark the conclusion of the National Research Programme NRP 67 "End of Life", Schwabe Verlag is publishing a book entitled "Das Lebensende in der Schweiz. Individuelle und gesellschaftliche Perspektiven" (End of life in Switzerland. Individual and social perspectives). The book provides a comprehensive survey of what science currently knows about how people in Switzerland die, as well as looking at the situation in other countries. Furthermore, it reflects on this knowledge in the context of the key question of how society can enable people to die with dignity.
The four authors draw on a wealth of experience and knowledge. From 2012 to 2018, Markus Zimmermann (theologian, University of Fribourg), Stefan Felder (economist, University of Basel), Ursula Streckeisen (sociologist, Bern teacher training college) and Brigitte Tag (jurist, University of Zurich) were members of the Steering Committee of NRP 67 "End of Life". A year ago, the Steering Committee published a synthesis report of the results from the 33 research projects in the Programme. The new book goes beyond this report by systematically examining the results of NRP 67 and the literature that has been since published internationally. It goes into particular depth on what is known about the processes of dying, decisions at the end of life, end-of-life care, financial and legal considerations, and ideals of dying.
Notions of what it means to "die well"
When it comes to ideals of dying, there are two diametrically opposed schools of thought. For one thing, dying goes hand in hand with a spiritual experience; it is seen as a process of maturation and transition that can involve pain and loss of control. For another, death centres around individual autonomy. It should occur as free of complications as possible and at a self-appointed time. "To better understand and deal with the conflicts that exist in society about what the end of life should be like, it is important to develop an awareness of different ideals of dying", says Markus Zimmermann. "We are looking at a plurality of ideas and values, which explains why even political end-of-life decisions are frequently the subject of heated debate."
People are willing to pay
NRP 67 has shown that people in Switzerland are willing to cover substantial costs at the end of life - the willingness is higher in the French-speaking part of the country than in the German-speaking part. Nevertheless, an open discussion of the cost-efficiency of measures is needed. As NRP 67 documented, older people give rise to fewer costs in the final stage of life than younger people. The reasons for this are unclear and need to be investigated in greater depth. As death approaches, are older people denied treatments’ Or do younger people receive too much, too expensive treatment at the end of life?
Places to live and die
Four-fifths of people in Switzerland - and significantly more women than men - die in hospitals and residential homes. Their needs are not always taken into account. At present, many hospitals are not equipped to support people in the process of dying or give them appropriate care. Furthermore, residential homes regard themselves as places to live.
"These institutions should make greater provision for the end of life. There is a need not only to adapt basic attitudes to dying, but also structures and processes", says Markus Zimmermann. "Dying at home - which is what many dying people would like to do - is not always a better alternative. Family members often feel overburdened by this." The desire to die at home is an expression of longing for a familiar, safe place. This longing is not fulfilled by converting the living room into a "dying room" full of medical equipment and carers coming in and out.
Encouraging palliative care
Timely and open dialogue between professional carers and the dying and their families is often not taking place, even though it is desirable. Palliative care has the greatest potential to improve this situation. This comprehensive approach to providing support and care centres around relief of suffering, helping to maximise quality of life, taking into account social and spiritual needs, involving relatives and ensuring that existing services are effectively networked. "However, this is only possible if the everyday clinical practice of dividing patients into those who receive curative care and those who receive palliative care is abandoned. Introducing palliative care at the appropriate juncture should become a natural part of care and support during the final phase of life", says Markus Zimmermann.
Pioneering eastern Switzerland
Eastern Switzerland is a pioneer in the field, since experience of providing community-based palliative care has already been acquired there. It has been found that success is dependent on planning and gradually establishing a "culture of supportive togetherness" in residential districts.
Nevertheless, Markus Zimmermann emphasises that no matter how carefully the end of life is planned, the process of dying will remain unpredictable and will frequently throw up unforeseen questions. "There is only so much planning you can do for the final phase of life, and that’s something we have to live with."
Markus Zimmermann, Stefan Felder, Ursula Streckeisen, Brigitte Tag: Das Lebensende in der Schweiz. Individuelle und gesellschaftliche Perspektiven (End of life in Switzerland. Individual and societal perspectives). Schwabe-Verlag, Basel 2019, 228 pages. /