Maria Sykes
Maria Sykes
January 16, 2024 ·  5 min read

Perspectives: Choosing to Die Before Dementia Takes Over

Annie Zwijnenberg died in her sleep at 81 years old, surrounded by her beloved family members and a medical team that had cared for her for some time. But she didn’t die of natural causes. Her doctor administered a lethal injection, several hours after she ingested a deadly glassful of sedative….
And that’s exactly how Annie Zwijnenberg wanted it.

Euthanasia and Assisted Dying

The Netherlands is one of a handful of countries in which euthanasia is legal. Along with Belgium, Canada, Luxembourg, and Colombia, Dutch doctors can oblige their patients’ requests to end their lives where a medical condition makes a future without bearable pain and suffering impossible.

“Physician-assisted suicide is legal in seven US states and the District of Columbia. It is an option given to individuals by law in the District of Columbia, Hawaii, Oregon, Vermont and Washington. It is an option given to individuals in Montana via court decision. Individuals must have a terminal illness as well as a prognosis of six months or less to live. Physicians cannot be prosecuted for prescribing medications to hasten death.” CNN

In Annie’s case, that condition was Alzheimer’s disease, and as far as she was concerned, she preferred to make the decision about a medically assisted death while she still had the capacity to do so. Like thousands of others in the Netherlands, she worked with her doctor to outline her plans.

“I used to go climbing or skiing or whatever. In the village they said, ‘That Annie, she’s always on the go.’ I’d put my rucksack on in the morning and start hiking. I’d walk all day. Now I can’t do anything. I get confused all the time,” she says in the film Before It’s Too Late, which followed her journey to death by euthanasia.

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Why Some Are Choosing Early Euthanasia

The vast majority of euthanasia cases for Alzheimer’s patients are carried out in the early stages of the disease, before the point that doctors lose certainty in the wishes of the person in their care. It’s a particularly troubling dilemma posed by people like Annie.

While debilitating physical conditions don’t generally interfere with a person’s capacity to make their own medical decisions, illnesses like dementia that affect cognition can make it unclear to medical care providers who should really be responsible for their wellbeing.

Setting aside the issue of euthanasia for a moment, families affected by dementia or comas can recognize the difficulty of honoring a loved one’s wishes about their will and estate, medical treatment choices, and living conditions.

Why miss out the remaining time of reasonably good health? Annie explained her perspective: “Yesterday I spoke to a former neighbor on the phone. She said, ‘But I don’t understand. You can still do everything can’t you?’ I said, ‘Well the point is, first of all, I can’t. And second, if I wait until the moment has come to stop it’ll be too late. I won’t be allowed to do euthanasia anymore.'”

Annie made the decision to die by euthanasia as soon as she heard the diagnosis for Alzheimer’s disease. She planned a special dinner to share with her family and wrote a letter to God asking for protection for her children.

At every step of the way, her doctors asked her if she was sure she wanted to continue and reiterated countless times that this was a sleep she wouldn’t wake up from. Annie accepted the lethal dose of sedative in a glass and drank it without hesitation, then gently fell into a deeper and deeper sleep.

After several hours had passed and she was still sleeping, her team of doctors opted to inject her with a second lethal dose to prevent her from waking up again.

Although her two children faced fierce criticism from outside the family for not attempting to prevent Annie’s euthanasia, they ultimately left the decision to her. “It’s hard to see your mother die from euthanasia, but it was not our decision – it was her decision,” says her daughter, Anneke.

The Grey Area: Opposing Perspectives on Euthanasia for Dementia Patients

Annie may have died at the early stages of her disease, but it may soon prove much more difficult for similar patients in the future, thanks to a troubling legal case.

A 74 year old woman with dementia expressed a desire to eventually die by euthanasia to her doctor, but at other times contradicted her wishes. She died by a lethal dose of sedative mixed into a drink by her doctor without her knowledge, and she was being actively restrained by family members at the time.

The woman’s living will clearly expressed her direction for death by euthanasia, but many medical professionals and members of the public are disputing that her doctor’s actions were ethical.

“The commission said the written declaration wasn’t good enough, and the doctor should have stopped the procedure the moment the patient got up,” says Jacob Kohnstamm, coordinating chairman of the Dutch review committees for euthanasia cases.

Berna van Baarsen is a medical ethicist who stepped down from her position in such a committee because she was concerned about a growing number of euthanasia requests with murky details being approved.

“If you can’t talk to a patient, you don’t know what the patient wants,” she says. “In the beginning, they say: ‘Oh no, I don’t want to live in an old people’s home.’ Or, ‘I don’t want to be put in a wheelchair,’ and it happens. People always find ways to cope. That’s a beautiful thing about being human.”

On the other hand, Constance de Vries, who was Annie’s doctor, thinks although handling advanced cases of dementia is complicated, she can be confident in carrying out a patient’s wish.

“I try to be very, very, very sure about what I’m doing,” she says.

One such patient of hers was a woman suffering from dementia who requested death by euthanasia once she was unable to remember her grandchildren.

“When I gave her a glass of fruit juice, I said, ‘When you take it, you will sleep forever.’ She looked at her daughter, and the daughter said, ‘It’s OK mum.’ And she took it. I don’t know if she did understand fully, but I know what we did was OK, so unhappy was she.”

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