The Dying of the Light
A German novelist reflects on his time working at a home for the mentally ill, and the moral dilemmas surrounding euthanasia that have shaped his writing life
This story begins with the delusions of a young man. I was 19 years old. Every single one of those 19 years I had spent in the same place: a small town in the southern Black Forest, with two petrol stations, a youth club, a school and little else. After I finished my final school examinations it was time to cut loose. But what to do? My national service in a local hospital? I would probably be confined to changing a few light-bulbs. And then what – back to my parents’ home in the evening? Out of the question. I did some checking and discovered I could do my service abroad, such as working at a home for the disabled in Scotland or as a farmhand somewhere across the ocean. This was possible, provided you were lucky enough to get one of the few available placements. I was lucky.
Soon enough I wouldn’t be calling it lucky. I did not land in Scotland or even further afield. I ended up in France, at the northernmost tip of Provence, in a home for the elderly and mentally ill. “Are you sure you’re up for this?” asked the head of the institution. Sure, I thought. It was July, and the sunflowers were in full bloom, the sea was not far away and I could still hear the envy of my friends.
The nurses’ room was occupied when I arrived, so the warden decided that I should stay in the ward. “It’s just for now,” he said, “pas de problème.” The first night, a woman with dementia knocked on my door. She was surprised to see a new inmate, and for a second I thought it was me who wasn’t quite – at least in the common sense – right in the head. I led the woman back to her bed; she was crying. Only when she was asleep did I take my hand away from hers. The next morning I was to begin with in-patient care. I had not seen much of the world, but what I was looking at was too much. I saw skin covered with bedsores, the raw skin of elderly women. I saw the empty eyes of men that seemed to look out from a different world. I saw the genitals of women in their eighties and it was difficult to say who was more ashamed, the patients or me. During that first day I thought of quitting for the first time, and on my last day I had the same thought. I never got used to the job.
For 12 months, I helped these people with their lives and then helped them with their deaths. I took them shopping, and then nursed them on their deathbeds. In the morning I would mow their lawns, and in the evening I would change their nappies. I would mend their radiators, and I would help them into their pyjamas. Often, somebody would beckon me into their room, where there was nothing else to do but listen to their stories. Sometimes they would make me smile, such as on the mornings they announced they were leaving for work, although they were in their nineties and it was Sunday. I would even say I enjoyed going with them to the farmers’ market. Some were victims of car accidents or hard drugs, some were not much older than I am now. It was fun to see them smile, to see them with other people, surrounded by air that smelled not of bodies on their way out, but of Provençal herbs. But we didn’t go to the farmers’ market very often.
I don’t want any more.
It didn’t take long before I heard this sentence for the first time. I was the new guy there, I was fresh, I was still listening.
I don’t want any more. Help me. I have nobody. No relatives and no friends and no meaning.
A former alcoholic in her fifties, who had drunk holes into her brain, enjoyed sitting on the sofa in the entrance area, waiting to get her daily ration of cigarettes. She didn’t do much else. On good days, she would imitate a smoker in a rush, and as soon as she saw me her eyes turned huge, pleading. Of course, I would then give her a spare cigarette, even though this was on top of her ration. Then she would beam for a moment. On bad days, she welcomed me with “Björn, je veux me suicider.” Sometimes she would cry. I have no idea whether she wanted to kill herself. I do have a rough idea about how lonely she was. I know that loneliness is the worst reason to commit suicide, because it would seem to be an easy thing to cure. I didn’t know how she, with her sad mind, perceived the world surrounding her, and whether this way of perceiving the world was the reason she wanted to end her life.
Not all the patients in the home had dementia. Some of them were sharp and fully aware of the situation. But even from them I heard the same sentence: I don’t want any more. Help me. They would say it more quietly than did the others, more tired, their gaze averted. They were relatively healthy women. There was hardly anything their bodies lacked, and still their lives were utterly deficient. I didn’t mind putting my hand on theirs, telling them about the summer, about its warmth, about the colours and the sunlight. Sometimes we would walk together, she who was tired of life and me. Sometimes, a walk would be out of the question. They were all in their beds, the women breathing through tubes, the men convulsed with pain. I don’t want any more. Help me. Today, I believe that during my time at this home I was never truly confronted with a sincere wish to die. My patients were lonely, I think, they were desperate, and some of them were ill. But they didn’t want to depart this life, even if they never tired of telling me they did.
At the time, however, I had a different view. We didn’t have any cases that were medically precarious. We didn’t have anyone with stomach-tubes, we didn’t have any terminal patients. No one was committed against their will. Still, even our less serious cases had a right to choose their own death, or so I thought at the time. When they asked me for death, when they needed help with it, I didn’t have a ready argument against it, not even a theoretical one. In practice, I was most reluctant to accept the idea of helping a human being to fulfil their own last wish. Today, I am a bit ashamed to admit I felt this way, even when surrounded by such visions of misery.
A human being doesn’t want to live any more, a human being is self-determined, a human being needs help with their own departure. Why don’t you help him? No, this was simple thinking, only thinking. But more on this later.
When my service was over, I felt relief – and shame. I was ashamed that I had never got used to the odour that wafted along the corridors and through the floors of the ward, or to the sight of skin covered with bedsores, or to the eyes filled with loneliness. I was ashamed that I hadn’t given my patients much of the warmth or intimacy they deserved – and which I had wanted to give them. I couldn’t give them what they deserved because there was always some inhibition, and sometimes fear. It isn’t human to deny your own feelings in favour of a pure picture of kindness, acting only out of deference to an ideal of humanity, an ideal which doesn’t exist. It is human to be honest, even if this honesty includes admitting to feeling disgust. What a harsh expression that is: feeling disgusted by another human being. I had intended to free myself of inhibitions. I had wanted to get my hands dirty, true. All I can say is that my plan did not work out as I imagined.
Back in Germany, I looked for distractions. I drove around, did a few internships with radio stations and newspapers and went to university. My patients were still on my mind. My memories of them didn’t become less clear or colourful. On the contrary, they became clearer. I remembered very well a woman in her sixties who cried for days. Her dementia wasn’t advanced enough to make her calm (if that’s possible), nor weak enough to make her aware of her condition. I remembered the swollen face of the former alcoholic. I remembered the 30-year-old man whose brain was damaged in a traffic accident. I remembered the woman with the tube down her nose. I don’t want any more. Help me. I didn’t just remember them, I actually saw them in front of my eyes. I saw their faces and their eyes. I knew all the details of their illnesses, all of their little preferences and quirks. I went and saw a psychotherapist who told me that as soon as these memories came back I was to move my eyes quickly from left to right. This was supposed to deconstruct my experiences. First my eyes hurt and then my head. Nothing else happened. I discovered the power of a bottle of beer to soothe my memories.
A year after my service ended, these ghosts which my work and thoughts had inspired became so overpowering that I began to write down the stories. This was not a belated diary, but a literary endeavour, right from the beginning. But it was very close to me and my experiences: a young man doing his civilian service reports on his experiences in a nursing home. Contrary to my expectations, the book appeared, published by Deutscher Taschenbuch Verlag. After some drastically disruptive events in my own family, I wrote another book. Einmal noch Marseille (Marseilles One Last Time) is the farewell-story of a small family, in which a father and his son accompany their wife and mother to the institution where she then dies. The ending remains unclear: just how did this character meet her death? Did somebody help her to die or did she endure to the end?
At the same time, a public debate on the right to die and euthanasia sprang up in the German – and other – media. The debate persists to this day and resembles a religious war. Terri Schiavo, who had been in a persistent vegetative state for some time, gets her stomach-tube removed, and then dies of thrist. Homicide or euthanasia? Or something in between? In the film Mar Adentro (The Sea Inside), Alejandro Amen-ábar touchingly documents an euthanasia and opens the debate for a larger audience. The German painter Jörg Immendorff falls ill with amyotrophic lateral sclerosis at the age of 51, and is soon unable to hold a brush. A whole nation follows his fate and discusses humane ways of dying. Chantal Sébire, 53, asks the French president in an open letter to help her to obtain a drug that will help her to die-she cannot take morphine, and her face is disfigured by cancer. The English rugby player Daniel James, 23, travels to Switzerland to end his life, assisted by an euthenasia group with questionable motives and the cynical name “Dignitas”. Sky Real Lives broadcasts a documentary about Craig Ewert, 59, in which you see Ewert (also in Switzerland) drink a deadly cocktail and die. Eluana Englaro, 38, who has been in a coma for 17 years after a car accident, dies after an Italian clinic removes life-support at her father’s request.
No wonder people accused me of simply jumping on the bandwagon when I published my third book, Die Erlöser AG (The Redeemer Company), which explicitly deals with different forms of euthansia. But it isn’t true. It is more that I felt – after all my personal experience of the issue – that I had to approach the topic in a literary way. This doesn’t mean that I don’t have a strong opinion about the issue. Indeed, I have had and still have concerns, even moral concerns. When you have concerns and opinions you are seen as suspicious, especially as a young author. My book is set in the near future, in Berlin. The city’s infrastructure has collapsed and paragraph 216 of the German Civil Code has been abolished: Tötung auf Verlangen (killing on demand) is legal. A doctor and a journalist set up an agency that looks after ill people at the end of their lives – to help them die or to kill them, depending on how you see it.
How could you? The author makes the elderly look foolish and creates a spectacle out of the issue. This is what some of the critics said. And what was already evident after my first two books became even clearer: if you yourself haven’t experienced what it’s like to see a poor incontinent human being tied to a bed, you won’t have much understanding of the novel’s sometimes very explicit pages. Those who do know what I am writing about usually have a very positive reaction to it.
I said earlier that I was ashamed of my youthful – and perhaps not very well thought out – take on the issue. I need to explain myself now. Years after my civilian service, I met a man at one of my readings. He had worked in a hospice for ten years. In contrast to my patients, his patients were very well looked after, from palliative medicine to counselling: they were assured that they would not be alone. He told the audience that in all those years he had never heard his patients ask for euthanasia. I was shocked. Was the wish for euthanasia only an indication of bad care, of a lack of medical and psychological attention? It would be an oversimplification to claim that all those years ago I was in favour of euthanasia and that now I am against it. If you choose one of the two options, you show only that you haven’t dealt with the subject. After more than 70 readings and round-table discussions about my book, it became clear to me that the more serious a discussion is, the more peacefully it develops. The fewer ideological embellishments each side attributes to their alleged opponent, the more understanding they can have for each other.
Last autumn, I was asked to read in a church. The man who invited me obviously hoped that the minister and I would clash. On the one hand, the religious, categorical Yes to life, and on the other, the categorical Yes to an autonomous life that includes the right to script one’s death. I can only say that the planned big bang never occurred. The minister emotionally described some memorable cases from his congregation, and I spoke about my civilian service. It was even quieter than it usually is in a church. No one advocated absolute ideas; we listened to each other.
When we speak about euthanasia, we are often speaking about something else. Even Swiss groups like Dignitas and Exit do not offer euthanasia in the legal sense. Rather, they assist with somebody’s suicide by giving the person who intends to die a substance that this person then has to take of their own accord. Legally, however, we speak of assisted suicide. “Helping someone to die” – what does that mean? Does it mean active euthanasia, where a doctor or other third party administers, on demand, the deadly dose? This is what we think of when we speak of euthanasia, even though it is illegal everywhere. Does it mean passive euthanasia, when life-prolonging mechanisms, such as respirators or stomach-tubes, are turned off, if the patients demand it? This practice is common in many hospitals and is entirely legal – a fact which often surprises even medical professionals. Or can a doctor give a patient so much morphine that he or she is more accepting of an early death? In that case, we speak of indirect euthanasia. Only when these terms are clear, and the respective courses of action apparent, are we able to decide what we are in favour of or opposed to.
Neat distinctions – if only it were so easy. These broad categories aside, there are hundreds and thousands of individual cases, all which need to be considered on an individual basis.
What really did happen to Craig Ewert when the British public watched him die? He drank the substance he was given. This was assistance in suicide. That is not illegal. It is illegal to administer the substance you need for that suicide. That is why Ewert had to go to Switzerland. He did not want to die. He said so explicitly. He was not tired of living, he was tired of being ill. The constraints that had become worse and worse had worn him down and exhausted him. He wanted to end his life at a point in time where he, a paralysed person, still had some sense of an autonomous body. He left earlier than he had to. If British law had allowed him to obtain a deadly substance, he could have taken it much later. You can also view it this way: the state stole some of his lifetime. Not only could he have departed later, he could also have done so with greater dignity: in his own surroundings – in his home, and not in a bare Swiss apartment. If his wife had been allowed to administer the deadly substance, he could have lived even longer.
Chantal Sébire was allergic to morphine. Her intense pain had to be treated with aspirin (a ridiculous thought). Her face was so disfigured by cancer that she thought she could no longer be seen in public. The sad thing is that she was probably right. She was embarrassed in front of her own children. President Nicolas Sarkozy didn’t grant her wish. Of course he didn’t. Had he done so, he would have set a precedent, with terrible consequences. One doesn’t even want to think that every patient in a similar predicament would be judged by the Sébire “paradigm”, or would be compared with this case, if only in hushed tones. “Sébire was able to leave us-so why doesn’t he leave us as well?” This argument – that the measure of these matters is not the value of life but the timeliness of dying – is crucial, more important than the fear we have that people would abuse (for one must admit the possibility) the gradual liberalisation of euthanasia. Such fears of abuse might be eased through a sensible process of liberalisation. However, as soon as it became legal to prescribe or to possess the necessary deadly substances – or if active assistance in suicide became legal – it would no longer be the one who leaves who has to justify his or her decision, but rather the one who stays. A horrible scenario.
In Germany, the term euthanasia (Euthanasie) has historical and ideological overtones. It doesn’t just mean euthanasia in general but also refers to the murders carried out by the Nazis (This is the reason why Germans speak of Sterbehilfe instead of Euthanasie). A “peaceful and gentle death” was in those dark years nothing but an empty phrase for the mass murder of mentally-ill people – people who absolutely did not want to die. It is important to keep this perverse interpretation of “the assisted death” in one’s mind. It is also important to point out the possibility of abuse. However, the Nazi years cannot be used as some kind of trump-card argument. During those years you got killed if you didn’t conform with the crude norms of the Übermenschen. The questions today are different: should you refuse somebody who is mortally ill and in full possession of their mental capacities their wish to die? Is there such a thing as a rational wish to die? Does that not run contrary to human nature? What happens to much-trumpeted individual autonomy if a person is connected to high-tech medical equipment and is thus in every important sense reliant on others?
The bottom line is that we cannot find solutions that are social or societal, but only solutions that are individual. The state has to acknowledge that it is no longer needed in this case, or rather, that it is out of its depth. We are used to producing legislation for nearly everything, from simple misdemeanours to war crimes. Why is it that we do not have an overarching law that deals with terminally-ill people who intend to end their lives before it is clinically necessary? Because this would never do justice to each individual case. The American state of Oregon has the world’s most progressive legislation. There, the development of hospices has the highest priority (it is an admission of failure that we do not have an extensive hospice network in Europe). Only if all means of palliative medical treatment are exhausted and the patient is still intent on ending his or her life can he or she then contact a doctor, who may then prescribe the substance required for such action. This final possibility is in reality hardly ever called upon. Having this request as an option, however, puts the minds of hundreds and thousands at ease, for they can say: if my condition deteriorates, I will have this alternative.
We should learn from such legislation. A law that attempts to give consideration to all shades of complexities and to cover all eventualities is doomed to fail. Even for myself, I have difficulty in constructing an argument that makes sense. I would like to have the right to keep a little phial in the basement, just in case, but that I would have a statutory right to do so scares me. We have to be able to tolerate this gap in the argument. It is important and right that we finally have a public debate on this. What happens at the moment of death, in the privacy of one’s room, and how legal it is-that is not always the public’s business.