In the Netherlands, where euthanasia is legal, it is not uncommon for patients with dementia to seek help from death. But in the last stages of this disease, many are no longer using their mental abilities and are unable to give their consent: in such a case, the doctor is currently facing legal proceedings.
Therefore, the fear of accessing this practice requires some patients to have euthanasia quicker than they would have liked.
Annie Zwijnenberg was never in doubt.
"The neurologist said," I am sorry, but there is no mistake, it is Alzheimer's, "recalls Soute-Anneke Zwijnenberg, referring to the day she was diagnosed with the disease.
"Then she said," Okay, then I know what I want. ""
Frank, Anneke's brother, intervenes: "Maybe she hesitated for five seconds and then said," Now I know what I'm going to do. "
They both knew his mother was referring to euthanasia.
It can be said that the story of Annie Zwijnenberg is a good example of how euthanasia should work in the Netherlands: with the patient's clear and concise agreement.
But there are other cases where consent is less consistent and less clear at the last minute.
Zwijnenberg's story was taken in the documentary "It's too late" (Dutch director Gerald van Bronkhorst).
In the film, the public can see the development of Zwijnenberg's disease, leading to his death with euthanasia for 81 years.
And it shows a strong woman who alone raised three children, enjoyed the climbing mountains and deep religious beliefs, and then was affected by senile dementia.
"I used to climb, ski, everything," says the film's main character.
"But now I can't do it, I am confused all the time."
Zwijnenberg wanted people to understand his decision, so he allowed the camera to shoot his last moments – the day of his death.
The video shows her sitting on the couch, easing and optimistic.
Her three children surround her, they joke with two doctors who arrived there to carry out euthanasia at the special dinner of the previous evening.
"We went to a three or four star restaurant, we laughed, we screamed, it was a nice dinner, maybe because there was no night in the evening, it was very special," said the son of the head.
In turn, her daughter Anneke said she had found the letter her mother had written this night.
"She wrote a letter to God to care for her children, she knew that if God were, she would be a merciful God," he said.
The pictures show that the doctor makes sure that Zwijnenberg knew he had chosen to die with euthanasia. He asks her several times if she is convinced of what she is doing.
"Are you sure you want to drink the mixture I give you?" The doctor asked.
"Do you know that it will make you sleep and you will never go back?" He added.
"I've been thinking many times about it, I reviewed it from start to finish last night and I want it, it's the best for me," she replied.
Then, if the glass is taken with a clear liquid containing a lethal soothing dose, there is no doubt.
He just complains that it has a bitter taste.
Her family moved to hide her while she was asleep for the last time.
"She took the entire contents of the glass, but it took some time," later Frank recalled. "He gradually went to sleep more peacefully, it was very soft."
But two hours passed and the woman was still sleeping. This led to the surreal scene described by the film director.
"She slept on the couch and started to fall, and the relatives told each other," I'm hungry, are we going to a sandwich? "It was like it was, chewing around this woman who was sleeping and dying on the couch," he noted.
Fears that Annie might wake up, doctors gave her a deadly injection.
"About 20 seconds later he was dead," said his son.
Her two children said they had always supported their mother's decision no matter how she felt them.
"It is very difficult to see how your mother dies, but that was not our decision, she was," Anneke said.
Although Frank received complaints about what his mother had decided.
"A good friend told me," You have to stop the mother ", to which I replied that I would not do that, that I supported him, then she said," You kill your mother, you kill your mother if you continue "It was hard to hear , "he noted.
Such arguments are widespread among those who opt for euthanasia and reflect the broader debate that began in the Netherlands in the 1970s, when doctors openly began to use so-called "killings of grace".
Discussions continued in the debate on legalization of euthanasia in 2002.
In order 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 "intolerable condition without any improvement" and that there is no "reasonable alternative".
Another doctor makes an independent assessment to confirm it.
The first case where a dementia patient undergoing euthanasia took place in 2004 was two years after the law change.
But cases of euthanasia involving dementia mainly involve the early stages of the disease, as it is very difficult to convince the doctor that the person has the opportunity to understand the decision to die when it is an advanced country.
In 2017, 166 patients with dementia at an early stage died of euthanasia and only three later stages of the disease.
In addition, medical ethics Berna van Baar believes that there is a change in the way that there are more cases in the future.
The specialist used to be in a committee that dealt with each case of euthanasia in the Dutch region, but withdrew from her because the most problematic cases were confirmed very easily.
"I've seen the change, the problem with this change is that it is very difficult to understand, understand, but it happens in our nose, and ultimately we will only know that there was a change, not a process," he said.
He relies too much on written statements or living wills in which patients say they want euthanasia and give their doctors the first symptoms of dementia.
"You can write down what your fears you do not want to experience, but they are desires, it is a manifestation of fear, and as we know, people are changing," he said.
For this reason, he claims that doctors always have to confirm that it is still a patient's wish before he or she dies. And with patients with advanced senile dementia, this is not possible.
"If you can't talk to a patient, you can't know what he wants," he said.
Although Van Baarsen is right that the pendulum swings to ease access to euthanasia for patients with advanced dementia, a doctor's study that did just that could push the pendulum in the opposite direction.
The case concerns a 74-year-old woman who had signed a written statement that she wanted euthanasia, but only when she was ready.
At the same time, the patient had also said in other cases that he did not want to die with euthanasia.
A doctor who worked in an older home made a soothing remedy for a woman's coffee without notifying her. Then the woman woke up just when the doctor tried to give her a fatal injection.
And it was worse: she had to keep her relatives until euthanasia was completed, although the level of control used was not clear.
Jacob Kohnstamm, one of the chairmen of the Dutch Euthanasia Review Committee, said it was clear that the physician in this case exceeded several limits.
"The Commission said the written statement was inadequate and the doctor had to stop the procedure when the patient woke up," he said.
The Committee noted that the professional had not taken care of his patient as a priority and referred the case to a Dutch court.
The case will be dealt with by a magnifying glass when it comes to justice, especially because it will help to clarify the conditions under which patients with dementia can access euthanasia.
But while many doctors will have this explanation more than welcome, it creates a worrying prospect for those who are ready to carry out euthanasia, even for people with advanced dementia, such as Dr Constance de Vries, a person who participated in Annie Zwijnenberg.
De Vries argues that it does not create conflicts to end the lives of patients who have a lot of difficulty in expressing what they want, unless they are always clear about these wishes when they could express them.
It is essential for her to have a long-term relationship with patients and their families so that they can talk to them about their written statements and for a long time adhere to the unwavering desire for euthanasia.
Remember a special case:
"She was a woman who was unhappy, she cried, she cried, she did not eat, and she was aggressive to others, and when she saw her, you realized how unhappy she was, and she always had something clear:" Day when I don't recognize my grandchildren, I want to die that day.
And the moment he couldn't recognize them, De Vries continued euthanasia with the support of his female relatives.
"This first case of treating a doctor with euthanasia is, of course, a matter of concern to me, and I'm worried about later evaluation judgments, so I'm trying to be very sure of what I'm doing," he said.
Although it does not consider it to be interrupted.
This is, of course, clear that this litigation could in the future hinder patients' access to euthanasia at subsequent stages of the disease.
If this happens, it may also have a rebound effect on patients starting early and wanting to live in euthanasia.
In fact, some are worried that if they expect too much, they might be denied the procedure.
Fear has become so common that the phrase is designed to describe the perfect time to apply euthanasia: "Five minutes before midnight".
Like the Cinderella story, everyone wants to wait until the last moment to leave the party – "up to five minutes before midnight" – but not too late.
This is exactly the regret of Anneke and Frank about the death of their mother Annie.
"I'm afraid that even when the law was on her side, or doctors supported it, she would come to the point where someone would say," Okay, but I'm sorry it's too late because you can no longer accept this decision. " by itself, "said Anneke.
Zwijnenberg speaks about the subject in Gerald van Bronkhorst's film, which refers to her fear of her title.
"Yesterday I talked to an ex-patient on the phone," Annie said. "She told me," But I don't understand, you can do everything, right? "I said," Well, I can't. And secondly, if I wait until it is time to stop, it will be too late. They will no longer allow me to be euthanasia. "