Death is scary. If you don't believe that, you probably haven't really thought about it. For the longest time I didn't either, until he stood in front of me. At the age of sixty, my mother, Claudia Schreiber, was diagnosed with Alzheimer's. She was and is a brilliant woman who I admire greatly. She has been a writer all her life and prides herself on working with her head - now her illness is robbing her of her most important tool.
Over the past three years, Claudia has asked me hundreds of times what her prognosis is and how she might die. She wants to escape the nightmare of her illness. She was already concerned with the question of self-determined dying when she was still healthy. Now she is ill and part of her diagnosis is that she can hardly remember our conversations. For her, every question is her first.
Over and over we talk about what their future might be like. A future that will not have a happy ending. The disease is bad and will definitely get worse. My mother's fantastic life is writing its final chapter, and I am struggling to grasp what it really means. I say goodbye to a person, although this very person is sitting next to me, breathing.
I am thirty years old. Until now I was immortal. Here and there a pet or a distant relative has died. That's when I briefly became aware of the transience of life. But death is too abstract for me - something given, yes, but unimaginable. Actually.
Now my mother. The answers demands. For them I need to know how we die, how life ends and what people really think when they are at the end of life. For many, the state of nonbeing is hard to grasp. Others only fear the process of dying, they just don't want to suffer and leave with dignity.
My mother kept asking me if there was a good death. So over the past few months I've spoken to dozens of people who are dying. These conversations are documented in the podcast “The Search for the Good Death”. Is there a good death? The answer: It's complicated.
I found an interesting 2016 study from Harvard Medical School that asked medical professionals how they wanted to die. Put simply, one of the results: When doctors are confronted with their own death, they avoid intensive care significantly more often than the rest of the population. Even though they know their way around? Or just because they know their stuff?
My own research supports the study. Palliative care physicians and nurses told me about their work, their care and dedication. They do everything for their patients. However, when asked about themselves, many of them do not want to take life-prolonging measures. For me that means: Even if the palliative care and hospice movement has already taken important steps in supporting the dying, we have not yet mastered the process of dying as a society. One reason could be that medical professionals primarily want to heal people and for many of them dying feels like a defeat. Or maybe just not enough time has passed? Thanks to modern scientific possibilities, people today are living longer and better lives than at any other time in history. As late as 1945, most deaths occurred at home. In the 1980s it was only 17 percent. Accompanying the process of aging and dying in an ideal way is a comparatively new challenge for the healthcare system. It is therefore understandable that we are not yet at the end of the journey.
In February 2020, the Federal Constitutional Court set an important milestone in the search for a good death and in the question of self-determined dying. The judges decided that commercial euthanasia in Germany, for example by associations, should no longer be prohibited. Those who want to die can therefore get help with suicide. Claudia heard about it and asked several times if that could be an option for her.
I was able to talk to Matthias Tidden about this (episode 2). The palliative care physician Matthias Thöns made the contact. This conversation blew my mind. Because Matthias Tidden decided to end his life the next day. In his mid-50s he is seriously ill. His intense, clear thoughts a few hours before his death were a turning point for me in dealing with dying. And I understand that euthanasia can be a way of a good death. One of many. Because it has been proven that the majority of those people who want to take advantage of them ultimately don't do it at all. For them, suicide doesn't seem like a solution. Rather, it is about the freedom to be allowed to do so.
The good death is different for everyone. And he needs the right, individual prerequisites that are not achievable for everyone. What do I tell Claudia now? I know that patients with Alzheimer's can still have good moments late into the disease. As long as I can, I want to share some of those good moments with her. If she asks questions about dying or her prognosis, I have better answers. But her worries remain. Death is hard work. Perhaps one of the toughest tasks we have to face. But it doesn't necessarily have to be a bad experience. A good friend of my mother died of his own accord with his family around him. His last words were, "I die so beautifully." That's a good death. He is rare. But there is.
Do you have suicidal thoughts? The telephone counseling service offers help. She is anonymous, free and available 24 hours a day on (0800) 1110111 and (0800) 1110222. Consultation via e-mail is also possible. A list of nationwide help centers can be found on the website of the German Society for Suicide Prevention.
