Self-determination, a full and intense life has become an essential trait of modern times. However, suffering is a part of life and, even though this may happen only when we become aware of ageing, illness and death, whether ours or someone else’s, each of us has to confront it, sooner or later, more or less. Most times this suffering is lived as a lack or a theft of freedom, as something that happens to us and upsets us. It is seen as the end of all that is praised in our society and protected as inalienable, possibly even legally binding, rights.
It belongs particularly to the spirit of our times to think “after leading a self-determined life, I would like to have my say also on suffering and death”. It is the first time in the history of humanity that people have the possibility to contribute to shaping the process of dying.
The claim of self-determination proves problematic, since all our efforts of conditioning and control fail in the last moments of our life; the human being is left abandoned to himself when dying.
Faith and hope in a loving You in afterlife can become important for people who are concerned with life after death and who have a concept of God. However, not everyone, even those who are religious, is truly deeply convinced about this. On the contrary, in a time in which we can rely only on ourselves, many have thoughts and questions for which there are no pre-established and clear answers, maybe also because we have never asked ourselves such pressing questions before in our life:
When I die, will I die or will I succumb to death helplessly? Will death take me away abruptly or will I pass away gradually? I am not afraid of death, but I am afraid of dying. I am afraid of death, but I am more afraid of what comes after it. Some people want death, but do not want to die, others want to die at last, so they no longer have to live, although it is not death they are really hoping for, but rather for another life.
In reality we know little about the process of dying and nothing about death.
Nothing is more mysterious and uncertain, yet at the same time more intimate and personal than dying, than my death. And when it becomes more concrete and personal, the human being is easily overwhelmed: thoughts like having to go away, fading, coming to an end, perplexity and confusion, fear and pains become omnipresent and threaten to cover up and erase all the rest, including the past and the future.
In addition, those who have passed away do not come back to tell us, explain to us, comfort us. Relatives and witnesses are left behind, they remain alone to cope with the feeling of farewell and loss. They are confronted with the inescapable realisation that, as Luther said, “in the midst of life, we are surrounded by death”. And yet, for those who remain, the moments of dying and death are often turning points from which something new may arise; they become sources from which strength, reinforcement and meaning sooner or later begin to flow. Death is a Being we share with our neighbour and a Part of life, it is shared and communicated and rises beyond the moment: when someone departs life, something special is born in those who remain, something that does not go away, something that is often highly precious.
One may think: the way I die is affected by the experience I have witnessed of others dying. Yet, in the end, my way of dying will be personal, exclusive, different and unique. The process of dying has a deeply personal and active quality: I die. It does not just happen, I DO it too. This is why we can speak about it and express our wishes while we are still able to do so.
Before such uncertainties, fears and challenges, some want clarity, rules and material to read, others do not want to know anything nor even think or hear about it. In this broad field, our handout on advanced treatment directives intends to provide guidance on theological, ethical, medical and legal aspects.
(From the Introduction of the ELCI-Booklet)