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New guidelines on euthanasia in dementia in the Netherlands

With the new position on decisions around the end of life, published on the first of December, Dutch doctors’ federation KNMG offers doctors support and overview in providing end-of-life care. An important new part is the chapter on euthanasia in dementia, which gives doctors more guidance to deal with this complicated situation together with their patients and relatives. 

This position bundles and replaces a number of existing documents and also contains new information.
In collaboration with the Dutch Patient Federation, the KNMG is simultaneously publishing two renewed guidelines for patients and doctors with tools to talk about the end of life.

Euthanasia in dementia

An important new chapter in the position is about the complex issues surrounding euthanasia in dementia. Many people are afraid of getting dementia. Sometimes people think that they have ‘arranged’ their euthanasia by drawing up a written euthanasia request. That is not the case. A written euthanasia request is the beginning of a conversation between doctor and patient, not the end of it.

As with all requests for euthanasia, the due diligence requirements of the law must be met. In dementia, it is complex to meet these requirements. Many doctors are also cautious and reserved in practice. They find it important to be able to communicate with the patient about the suffering and the death wish at the time of euthanasia. Performing euthanasia on a patient with dementia, who can no longer make it clear that he wants to die, is a bridge too far for many doctors. If a patient consistently and clearly makes statements that go against the written euthanasia request, then the requirements of the euthanasia law are also not met and euthanasia is not possible.

Sometimes this leads to tensions between the doctor and the patient or his loved ones, which is emotionally very stressful for all parties. To prevent this, it is important that people with a possible (future) euthanasiaewens talk to their doctor in time about their wishes and expectations. The doctor can then explain what is or is not possible and also what alternatives there are. It is also important that the doctor gives clarity about where his own boundaries lie.

Euthanasia in dementia: a professional and personal consideration

With this position, the KNMG gives doctors guidance to make responsible considerations together with their patients and relatives and to come to a decision. The KNMG considers it important that every doctor can make his own professional and personal assessment. This may mean that doctors sometimes decide not to grant euthanasia in complex situations on the basis of these personal considerations, even though the law does offer that space. At the same time, the KNMG considers it important to support doctors who are willing to consider euthanasia in complex situations.

These professional standards have been established by listening carefully to the diversity of medical and social views, including through an advisory group of doctors with different visions and expertises, round table meetings with representatives of patients and relatives and focus groups with doctors and a question via our physicians panel.  

Most important standards to act responsibly in euthanasia and advanced dementia

The professional standards in this position are an interpretation of the euthanasia law and the practical translation of the supreme court’s ruling of April 2020. The most important standards are briefly highlighted below. At all times, euthanasia in incapacitated patients with advanced dementia is only possible on the basis of a written euthanasia request that the patient himself drew up when he was still capable of will.

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