In the Netherlands, where euthanasia is legal, it is not unusual for patients with dementia to seek assisted death. But in the final stages of this disease, many more do not use their mental abilities and are unable to give consent: in such a case, a doctor is currently facing a trial.
Therefore, the fear of not being allowed to access this practice, makes some patients seek euthanasia earlier than they would like.
Eni Zwijnberg never doubted.
"The neurologist said:" I'm sorry, but there is no mistake, it's Alzheimer's disease, "Sue-Anneke Zwijnberg recalls, referring to the day she was diagnosed with her mother's illness.
"Then he said:" Well, then I know what I want. ""
Frank, Anneke's brother, intervenes: "Maybe she hesitated for five seconds and then said:" Now I know what to do. ""
They both knew that his mother was dealing with euthanasia.
It can be said that the story of Eni Zwijnberg is a good example of how euthanasia should work in the Netherlands: with clear and concise agreement from the patient.
But there are other cases where consent is less consistent and, at the last minute, less clear.
The story of Zwijnberg was captured in the documentary "It's Too Late" by Dutch director Gerald van Bronhorst.
In the film, the public can see the evolution of Zwijnberg's disease, leading to death from euthanasia at age 81.
She shows a strong woman, who just raised three children, enjoyed climbing the mountains and had deep religious beliefs, and then influenced the senile dementia.
"I climbed, I ski, it's all," says the protagonist in the film.
"But now I can not do anything of that, I am confused all the time."
Zwijnberg wanted people to understand his decision, so he allowed the camera to record the last moments, the day of his death.
He shows the video sitting on the sofa, relaxed and optimistic.
Her three children surround her, joking with the two doctors who arrived there to perform the euthanasia at a special dinner from the previous night.
"We went to the restaurant with three or four stars, we laughed, we cried, it was a wonderful dinner, maybe because there was no tomorrow that night, it was very special," said the protagonist's son.
For her part, her daughter Anneke said she had found a letter written by her mother that evening.
"She wrote to God to take care of her children, she knew that if there was God, she would be a merciful God," he said.
The pictures show the doctor who assured him that Zvineenberg was aware that he chose to die with euthanasia. She asks her several times if she is certain of what she is doing.
"Are you sure you want to drink the mixture that I will give you?" Asked the doctor.
"Do you know that this will fall asleep and you will never wake up?" He added.
"I've been thinking about it many times, I've been looking at it from start to finish last night and that's what I want, that's the best thing for me," she replied.
Thereafter, no doubt at the time of taking the glass with a clear liquid, which contains a lethal dose of sedatives.
He just complains that he has a bitter taste.
Her family is coming to embrace her while she sleeps for the last time.
"She took all the contents of the glass, but it took some time," recalls Frank later. "Little by little went to sleep, more and more deep, it was very soft."
But it's been two hours and the woman is still sleeping. This led to a surreal scene, as described by the director of the film.
"She was sleeping on the couch and began to" snore ", and relatives mutually said:" I'm hungry, are we going for a sandwich? " "It was so, chewing about this woman who slept and dies on the couch," he stressed.
Worried that Eni could wake up, doctors gave her a lethal injection.
"About 20 seconds later, he was dead," said his son.
Her two children said they had always supported her mother's decision no matter how she made them feel.
"It's very difficult to see your mother die like that, but it was not our decision, it was him," said Annec.
While Frank received complaints about what his mother decided.
"A good friend told me:" You need to prevent your mother, "to which I replied that I would not do it, that I supported her, then she said:" You kill your mother, you kill your mother if you continue with it. "It was hard to hear," he stressed.
Such arguments are common among friends and relatives of those who choose euthanasia and reflect the wider debate that began in the Netherlands in the 1970s, when doctors began to carry out so-called "murders for mercy" in the more open way.
The discussions continued in the debate over the legalization of euthanasia in 2002. And they never stopped.
To comply with the euthanasia law, patients must convince the doctor that their decision is completely voluntary, that their life has become or will become "an insurmountable condition without any prospect of improvement" and that there is no "reasonable alternative".
Another doctor must perform an independent evaluation to confirm.
The first case of a demented patient who was subjected to euthanasia occurred in 2004, two years after the change of the law.
However, cases of euthanasia involving dementia include mostly patients in the early stages of the disease, because it is very difficult to convince a physician that the person has the ability to understand the decision to die when in an advanced state.
In 2017, 166 demented early-stage patients died of euthanasia, and only three in the later stages of the disease.
In addition, medical ethic Berna van Baars believes there is a change, so there will be more cases in the future.
The Specialist was in a committee who was considering any euthanasia case in a region of the Netherlands, but, according to her, resigned, as the most problematic cases were approved very easily.
"I've seen a change, the problem with that change is that it is very difficult to understand, to understand, but it happens, it happens under our noses and in the end we will discover that there was a change, not a process," he said .
For Van Baarse, he relies heavily on written statements or live tests, in which patients say they want euthanasia and give their doctors the first symptoms of dementia.
"You can record what your fears are, what you do not want to experience, but they are desires, it is an expression of fear, and as we know, people are changing," he said.
For this reason, he claims that before helping someone die, physicians must always confirm that this is the patient's desire. And in patients with advanced senile dementia, this is not possible.
"If you can not talk to a patient, it's impossible to know what he wants," he said.
Although Van Baarsen is right that the pendulum is now moving towards facilitating euthanasia in patients with advanced dementia, the trial of a doctor who did just that can push the pendulum in the opposite direction.
The case includes an 74-year-old woman who signed a written statement she wants euthanasia, but only when she was ready.
At the same time, the patient also said on other occasions that she did not want to die with euthanasia.
The doctor, who worked in a geriatric home, put a sedative in a female cafe without telling her. Then the woman woke up at the precise moment when the doctor tried to give her a lethal injection.
And it was worse: she had to keep her relatives, while euthanasia was over, although the level of control that was being used was not clearly understood.
Jacob Constable, one of the heads of the euthanasia audit committee in the Netherlands, said it was clear that the doctor had gone beyond the limits in that case.
"The commission said the written statement was insufficient and the doctor had to stop the procedure at a time when the patient woke up," he said.
The committee pointed out that the professional did not care for his patient as a priority and referred the case to Dutch justice.
The case will be examined with a magnifying glass when it comes to the trial, especially because it will help clarify the circumstances in which patients with dementia can access euthanasia.
But while for many doctors this clarification will be more than welcome, it is a surprising opportunity for those who are ready to commit euthanasia, even in people with advanced dementia, such as Dr. Constance de Vries, the person who attended Eni Zwijnberg .
De Vries claims he does not generate conflicts to end the lives of patients who have a lot of difficulties expressing what they want, as long as they were always clear about those desires when they could express them.
It is fundamental for her to have a long-term relationship with patients and their families, so that she can talk to them about their written statements and follow the unwavering desire for euthanasia in the long run.
Remember a special case:
"She was a woman who was unhappy, crying, crying, not eating and was aggressive for others, and when I saw her, I realized how unhappy she was, and she always had something that was clear:" The day I do not recognize my grandchildren, That day I want to die. ""
And the moment came when he could not recognize them, so De Vries proceeded with euthanasia, with the support of the relatives of the woman.
"This first case of a doctor treated by euthanasia worries me, of course, I am worried about the valuable judgments that are made later, so I try to be very, very confident about what I'm doing," he said.
Although he does not think about stopping it.
What is safe, he says, is that this court case may hinder euthanasia in patients in the later stages of the disease in the future.
If this happens, it may also have the effect of recovering patients in the early stages who want some time in euthanasia in their lives.
In fact, some worry that if they expect too much, they may be deprived of the procedure.
Fear became so common that the phrase was invented to describe the perfect time to apply euthanasia: "five minutes before midnight".
As in the Cinderella story, everyone wants to wait until the last moment to leave the party – "five minutes before midnight" – but not too late.
That is precisely the remorse that Annek and Frank brought about the death of their mother, Annie.
"I was very scared, even when the law was on her side or the doctors supported her, she would reach the point where someone would say:" Okay, but I'm sorry it's too late, because you can no longer bring this decision. for himself, "Anneke said.
Zvienberg himself talks about the subject in Gerald van Bronhorst's film, which alludes to her fear in her title, It's Too Late.
"I talked to a former patient on the phone yesterday," said Annie. "She said to me:" But I do not understand, you can still do everything, right? "I said," Well, the point is that, above all, I can not. And secondly, if I wait until the time comes to stop, it will be too late. They will no longer allow me to have euthanasia. "