In the Netherlands, where euthanasia is legal, it is not unusual for patients with dementia to seek assisted death. But in the last stages of this disease, many are no longer in use of their mental faculties and are incapable of giving their consent: for such a case, a doctor currently faces a judicial process.
Therefore, the fear of being denied access to this practice is pushing some patients to request euthanasia earlier than they would have wanted.
Annie Zwijnenberg never had any doubts.
"The neurologist said:" I'm sorry, but there is no way there is a mistake, it's Alzheimer's, "recalls soute-Anneke Zwijnenberg, referring to the day they diagnosed the illness to their mother .
"Then she said:" Ok, then I know what I want ".
Frank, Anneke's brother, intervenes: "Maybe she doubted for five seconds and then said:" Now I know what I will do ".
They both knew that her mother was referring to euthanasia.
It can be said that the story of Annie Zwijnenberg is a good example of how euthanasia works in Holland: with clear and concise consent from the patient.
But there are other cases where consent is less consistent and, at the final moment, less clear.
Zwijnenberg's story was embodied in the documentary It's too late ("It's too late"), from Dutch director Gerald van Bronkhorst.
In the film, the public can see the evolution of Zwijnenberg's disease, which leads to his death by euthanasia at age 81.
And he shows a strong woman, who raised only three children, enjoyed climbing mountains and had deep religious beliefs, then affected by senile dementia.
"I used to climb, ski, all this," relates the protagonist in the movie.
"But now I can not do anything about it. I am confused all the time."
Zwijnenberg wished people to understand their decision, allowing a camera to film its final moments, the very day of his death.
The video shows it sitting on the sofa, relaxed and optimistic.
His three children surround him, they joke with the two doctors who have arrived there to carry out euthanasia about the special dinner of the previous night.
"We went to a restaurant of three or four stars. We laughed. We cried. It was a lovely dinner, maybe because there was no tomorrow tonight. It was very special," said the son of the protagonist.
For her part, her daughter Anneke explained that she had found a letter that her mother had written that night.
"She wrote a letter to God to take care of her children. She knew that if there was a God, it would be a merciful God," he said.
The images show the doctor making sure that Zwijnenberg was aware that he had chosen to die through euthanasia. He asks several times if he was sure of what he was doing.
"Are you sure you want to drink the mixture that I will give you?" Asked the doctor.
"Do you know that this will get you to sleep and you will never wake up again?" He added.
"I have often thought about it, I reviewed it from beginning to end last night and that is what I want. It is the best for me," she responded.
Therefore, there is no doubt when you take the glass with the transparent liquid, which contains a lethal dose of sedatives.
It only complains that it has a bitter taste.
Her family approaches him to embrace while she is sleeping for the last time.
"She took all the contents of the glass, but it took him some time," Frank later reminded. "Little by little he went to sleep, more and more deeply. It was a very soft thing."
But they spent two hours and the woman was still asleep. This led to a surreal scene, as described by the director of the film.
"She was sleeping on the couch and started snoring. And the relatives called each other" I'm hungry, are we going for a sandwich? "This was the thing, we chewed around the floor. this woman who slept and died on the couch, "she noted.
Worried that perhaps Annie woke up, the doctors gave him a lethal injection.
"About 20 seconds later, he had died," said his son.
His two children said they had always supported their mother's decision, beyond how they made them feel.
"It is very hard to see your mother die like this, but it was not our decision. It was her," said Anneke.
While Frank received complaints about what his mother had decided.
"A good friend told me," You have to stop your mother, "which I replied that it was not going to be done, he supported it. Then he said," You're killing the your mother, you are murdering your mother if you continue with that. "That was hard to hear," he wrote down.
Arguments like this are common among friends and family of those who choose euthanasia and reflect the broadest debate that began in Holland in the 1970s, when doctors began to call so-called "murder killings" more open
The discussions continued in the debate for the legalization of euthanasia in 2002. and they never ceased.
To comply with the law of euthanasia, patients must convince the doctor that their decision is completely voluntary, that their life has become or will become "an insufferable suffering without any prospect of improvement. "and that there is no" reasonable alternative ".
Another doctor must conduct an independent evaluation, to confirm it.
The first case of a patient with dementia that was practiced in euthanasia occurred in 2004, two years after the law changed.
But euthanasia cases that involve dementia mainly include patients in the early stages of the disease, because it is very difficult to convince a doctor that the person has the ability to understand the decision to die when the same is in a advanced state
In 2017, 166 patients with dementia at an early stage died in euthanasia and only three in the last stages of the disease.
Beyond that, the specialist in medical ethics Berna van Baarse believes that there is a change in the future for more cases.
The specialist used to be in the committee that reviewed each case of euthanasia in a region of Holland, but resigned, according to her, because the most problematic cases were being approved very easily.
"I have seen the change. The problem with this change is that it is very difficult to understand. To understand. But it is happening. It is happening under our noses and in the end we are only going to learn that there was a change. , he said.
For Van Baar, he is confident in written declarations or testaments in life, in which patients point out that they want euthanasia and that they give their doctors before the first symptoms of dementia.
"You can write what your fears are, what you do not want to experience. But these are desires. It's an expression of fear. And as we know, people change," he said.
For this reason, he argues that before helping someone die, doctors always have to confirm that this is still the patient's desire. And with patients with advanced senile dementia, this is not possible.
"If you can not talk to a patient, it is impossible for you to know what he wants," he said.
Even Van Baarsen is right about the pendulum now oscillating to facilitate access to euthanasia for patients with advanced dementia, the trial against a doctor who did exactly that could push the pendulum in the direction the opposite
The case involves a 74-year-old lady who had signed a written statement that wanted euthanasia, but only when it was ready.
At the same time, the patient had also said on other occasions that he did not want to die for euthanasia.
The doctor, who worked in a geriatric home, put a sedative in the coffee of the woman without saying it. Then, the woman woke up at the precise moment in which the doctor tried to give him a lethal injection.
And it was worse: she had to be subjected to her relatives while completing euthanasia, although the level of control that was used was not clear.
Jacob Kohnstamm, one of the heads of the review committee for euthanasia cases in the Netherlands, said that it is clear that the doctor exceeded several limits in this case.
"The commission said the written statement was not enough and the doctor had to stop the procedure at the moment the patient woke up," he said.
The committee indicated that the professional had not taken care of his patient as a priority and referred the case to Dutch Justice.
The case will be examined with magnifying glass when it comes to 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, the same raises a disconcerting perspective for those who are ready to carry out euthanasia even in people with advanced dementia, such as Dr. Constance de Vries, person who attended Annie Zwijnenberg.
De Vries maintains that it does not generate conflicts to end the lives of patients who have many difficulties in expressing what they want, provided they have always been clear about these desires when they could express them.
For her, it is essential to have a long-term relationship with patients and their families, to be able to talk with them about their written statements and to observe for a long period the indestructible desire for euthanasia.
Remember a case especially:
"She was a woman who was unhappy. He cried, screamed, did not eat and was aggressive with others. When you saw her, you noticed how unhappy she was. And she always had a clear point:" 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 that De Vries proceeded with euthanasia, with the support of the relatives of women.
"This first case of a doctor treated for euthanasia worries me, of course. I am concerned about the value judgments that are made afterwards. So I try to be very, very sure of what I am doing," he said.
Although it is not considered stop doing it.
What is certain, he says, is that this case could hinder future access to euthanasia for patients in the last stages of the disease.
If this happens, it could also have a rebound effect on patients in the early stages that want euthanasia at some point in their lives.
In fact, some are worried that, if they wait too long, they could deny the procedure.
The fear has turned into such a commonplace, so much so that you have coined a phrase to describe the perfect moment to apply euthanasia: "five minutes before midnight."
As in Cinderella's story, everyone wants to wait until the last moment to go to the party – "up to five minutes before midnight" – but not too much because it's because be it late
This is precisely the remorse expressed by Anneke and Frank about the death of his mother Annie.
"I was very scared that, even when the law was on your side or the doctors would support it, it would come to a point where someone would say:" It's okay, but I'm sorry it's too late because you no longer can. make that decision for yourself & # 39; ", said Anneke.
Zwijnenberg himself speaks of the subject in the film by Gerald van Bronkhorst, which alludes to his fear in his title, is too late.
"Yesterday I spoke with an exeina on the phone," Annie said. "She told me:" But I do not understand. You can still do everything, right? "I said:" Well, the point is that, first of all, I can not. And second, if I wait until it's time to stop, it will be too late. They will no longer allow me to have an euthanasia. "