The euthanasia of patients with advanced dementia is happening — AusDoc explains how it works

The most ethically complex issue at the heart of the debate about euthanasia is dementia.

Advocates consider it a matter of self-determination and autonomy — the freedom to choose through an advance care directive the circumstances of our own death at a future point when we lack the capacity to decide.

The issue, however, is complex.

Can the changes wrought on our identity as dementia advances end in a separation between the self who writes the directive and the self of the future, whose existential experiences may be very, very different from what is imagined?

In recent weeks on the AusDoc website, doctors have discussed the rights and wrongs of the idea. As you would expect, there is much disagreement.

But euthanasia is being performed by doctors on patients with dementia.

This article is about what happens in the Netherlands.

The first point to make is that it is not widespread. Of the 9068 deaths by euthanasia in the Netherlands in 2023, 328 were patients with dementia.

Of those, just eight were patients with advanced dementia who had lost decisional capacity.

Under the system, euthanasia for a decisionally incompetent patient based on an advance directive is considered an “exceptional case” and, as such, each case is scrutinised by the Dutch Regionale Toetsingscommissies Euthanasie (RTE) review boards.

It remains highly controversial, particularly within the medical profession itself.

We have chosen one case from last year, which involved the death of an 80-year-old man, to explain what happens and the role doctors have.

The patient’s advance care directive had been composed 10 years earlier. In it he wrote that he would want euthanasia if he became incontinent; had to go into a nursing home; became aggressive; could longer recognise his loved ones; went into a coma; had a stroke; could no longer eat, drink or breathe independently.

The RTE review board report said he had watched his siblings die from dementia and concluded the kind of suffering involved would be unbearable for him.

In the final few months of his life, the review board said he deteriorated rapidly.

“He no longer recognised his family, could not eat or drink unassisted and certain medications made him fall more often.

“His emotional state also deteriorated, switching between aggression, to the point of physical violence, and sorrow when he was cognisant of his memory decline.”

He had not communicated — either verbally or behaviourally — a change of heart, the board said.

Instead, on several occasions, he had apparently expressed that he no longer wished to live.

The key question for his treating doctor (as it is for the Dutch euthanasia system as a whole) was whether the patient’s suffering was unbearable as laid out in the advance care directive.

This was assessed during a series of visits made by a variety of doctors to his residential aged care home.

“The patient was very agitated, visibly frustrated and, on several occasions, shouted that he no longer wanted to live,” the review board said.

“He was aggressive and would suddenly hit another person. He was receiving medication for this, but that caused him to fall more frequently.”

The doctor said he found the patient’s situation to be distressing and humiliating and that his suffering was palpably unbearable.

Other physicians involved in the case, as well as the independent expert and the independent physician, shared this opinion.

At this stage, an independent psychiatrist found meaningful communication was no longer possible.

The treating doctor also spoke with the patient’s wife and consulted an elderly care specialist as an independent expert who visited the patient and tried to have a conversation with him.

“In view of the patient’s agitated behaviour and possible outbursts of anger, frustration and physical aggression, it was decided, in consultation with everyone involved, to administer a sedative before euthanasia was performed,” the report stated.

“This caused the patient to fall asleep. The physician then carried out the euthanasia procedure in accordance with the guidelines in the presence of the patient’s wife and children.”

There are many questions here.

The main one is the status of the advance care directive. Is it a sovereign document?

Once decision-making capacity is lost in regard to each of the specific directives written out by the patient, do the directives trump all other considerations?

Or put another way, once a doctor judges that the circumstances laid out in the directive have been met, is there scope for the directive to be ignored?

“I would not say the living will overrides the consent of a patient who has passed the point of decisional competence,” says Dr Thomas Mulder (PhD), a Dutch lawyer and legal academic based in Sydney.

“Rather, the living will is the consent of a patient expressed before passing the point of decisional competence.”

On one level, this makes the directive protective. No doctor can administer euthanasia at the urging of family and friends, Dr Mulder says, even if they claim it is what the patient would have wanted.

But what happens if the patient’s comments and general behaviour suggest they want to live?

In the literature underpinning the Dutch system, these are termed “contraindications”.

They include, according to the RTE board, ”clear verbal utterances or consistent behaviour on the part of the patient [which] do not match the essence of the request [laid out in the directive]”.

The board stresses that contraindications arising when the patient is no longer capable of expressing their wishes with regard to euthanasia “cannot be interpreted as a revocation or amendment of the previously drawn up advance directive”.

But they are central to the doctor’s assessment of the fundamental question — whether the patient’s suffering at this point is unbearable as explicitly defined in the advance care directive, the legal basis on which euthanasia can be administered.

The doctor is meant to look at these indications in combination with the patient’s condition and behaviour as a whole as part of their assessment of the patient’s current physical and mental state, the review board says.

But according to Dr Mulder, even when a patient is living in conditions they previously described as “unbearable” in their directive, the doctor is still legally required to discuss euthanasia with the patient in cases where the patient is still communicative.

Former Dying With Dignity Victoria board member Associate Professor Peter Lange says intolerable suffering is front of mind for Dutch doctors making these decisions.

“Even if all other criteria per the advance care directive are met and the patient agrees, if the patient appears to not be suffering (eg, singing with the others in the nursing home activities) VAD [voluntary assisted dying] will not proceed.”

Ultimately, the doctor must be confident that the patient has not changed their mind.

But it is complicated.

Back in 2016, there was a euthanasia case involving a 74-year-old patient with dementia that subsequently made headlines around the world.

It involved a geriatrician who had performed euthanasia on a woman with dementia who had to be physically restrained by her family.

The doctor was charged with voluntary manslaughter under article 293 of the Penal Code.

The District Court of The Hague was told that the patient had written a directive asking to be euthanised if she had to enter a care home.

Multiple independent physicians and family members had agreed that her condition aligned with her directive’s description of unbearable suffering, and so a sedative was put in her coffee.

Despite this, the woman began moving and making noises before the drug was administered and had to be held down by family while the euthanasia via a lethal injection was completed.

The prosecution alleged the doctor had acted without proper assent by performing euthanasia on a patient expressing “contraindications”.

“A written living will has to be verified as long as an incapacitated patient is still able to express a specific (coherent) wish to live or die,” it argued.

“Since the patient at some point in time made statements that can be taken to mean that she thought euthanasia went too far and that she did not want to die yet, the accused was not allowed to practise euthanasia on the patient without a further and consistent confirmation of her wish to die.”

As the trial ran, the court was told that the woman’s advance directive included a clause acknowledging the degree of discretion her physician would have over the end of her life.

“By signing this request for euthanasia, I therefore consciously accept the possibility that a physician might comply with the request, about which I might have come to think differently in my present state of mind.”

But as her condition deteriorated at the start of 2016, she began to issue ambivalent and contradictory statements about euthanasia.

Her husband told the court that she “constantly says she wants to die, but after five minutes, she says not now.”

Her GP also told the court she claimed to be “doing well” when asked her about her condition and no longer understood what he meant when the GP tried to ask her about euthanasia.

When it was explained to her, she said: “No, I don’t want that.”

“I explained to her that she would be admitted and that she then had to stay there and that she earlier had expressed that she didn’t want that and then I started about euthanasia.

“She said, ‘Yes, I might want it then but not now’,” the GP told the court.

Nursing staff also said that, during the larger part of the day, she showed signs of agitation, unrest, stress, anxiousness, sorrow, anger and panic.

“She cried a lot, often said that she found it horrible and that it was breaking her down and said every day (up to 20 times a day) that she wanted to die.”

These contradictory signals made the case an important legal test of the sovereignty of the advance directive and the reason why it took place with an agreement that a guilty finding would not result in the geriatrician being imprisoned.

The judges ruled that the physical and verbal display the patient made before the lethal injection were “spasmodic reactions the patient was not consciously aware of”.

But the question remained whether the doctor had wrongly assumed the woman (once she was deemed decisionally incapable) still had an “explicit and serious desire” for euthanasia.

The judges sided with the doctor.

They said, in view of the state of profound dementia the patient was in at the time of her death, the accused “did not have the obligation to obtain information from the patient about her present wish to live or to die”.

When it comes to incapacitated patients, oral verification of their wishes to live and their suffering is impossible.

“Setting this requirement [to secure oral verification] would be detrimental to the living will of the patient, which is specifically intended for the situation in which the person who drafted the living will ends up in a state of unbearable and hopeless suffering and is no longer able to express his will,” the court wrote.

But there is an important point here. Ultimately, the case was not about the judges trying to establish whether the patient was experiencing unbearable suffering, whether the patient had “wanted” to die and the conceptual issues of what that means in the case of a patient with advanced dementia.

It was about whether the doctor had gone through the processes laid down by the law to establish whether the patient was experiencing unbearable suffering and was expressing consent.

It was an issue about whether the geriatrician had shown due care or if she had been reckless.

Dr Mulder said even with the sovereignty assigned to the advance care directive, doctors retain a significant degree of discretion in making the final determination.

“[Physician] discretion is only logical as [consent] would entirely depend on the specific circumstances of each case and no laws or guidelines could prescribe how to determine whether consent has been expressed in detail as every case is different,” he said.

But to critics, the level of discretion mixed with the level of ambiguity that exists has made advance directives sanctioning euthanasia controversial among Dutch doctors.

Berna van Baarsen, a medical ethicist, quit her role on the review board back in 2018 declaring it “fundamentally impossible” for physicians to make accurate judgements about what is unbearable to patients suffering from dementia who cannot properly articulate their subjective experience.

She is not alone.

A year earlier, more than 200 Dutch doctors announced their objection to euthanasia for advanced dementia patients.

“To someone who cannot confirm that he wants to die? No, we are not going to do that. Our moral reluctance to end the life of a defenceless human being is too great.” their statement said.

Dr Carmel Kouprie is a psychiatrist registrar and a committee member at the Euthanasia and Psychiatry Commission, which is part of the Dutch Society for Psychiatry.

Her work has given her insight into the way euthanasia affects the doctors who choose to perform it.

“Euthanasia is very scary for a lot of doctors, and it feels like a risk, especially because you are judged afterwards,” she told AusDoc.

“I think the biggest thing is that someone is going to die because of you.

“You do not sleep very well the night before. You do not sleep very well the night after. It is a very intense thing.”

The VAD system in Australia is still in its infancy, where the eligibility criteria have been largely restricted to those likely to die within 12 months who face unbearable suffering.

But it is founded on the requirement that, at the moment of their death, they are fully aware of what is about to be done to them.

But the debate is evolving.

Dementia Australia currently stresses it has no position on the question of euthanasia but says it supports what it describes as the right of every person, including those living with dementia, to exercise choice over end-of-life care options, which it says may include VAD measures.

Clearly, the ethical debate surrounding euthanasia in the context of dementia is not simply about conceptual abstractions.

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