Many general practitioners experience emotional strain and uncertainty when it comes to requests for euthanasia for patients with dementia, according to research by the Radboud university medical center. This is due to expectations of a pre-drafted living will, the difficult assessment of the will's capacity, and pressure from patients themselves and loved ones. Better support for doctors is desirable.
In the Netherlands more and more people with dementia are filling out a living will, often expecting that they are automatically entitled to euthanasia when their dementia incapacitates them. But doctors struggle with euthanasia in dementia. They feel pressured, experience uncertainty, and encounter their own emotional and personal frameworks. This is evident from the thesis of general practitioner and researcher at Radboudumc Jaap Schuurmans.
The reason for the study was a change in the Dutch guideline for euthanasia in 2015 and the commotion that followed in the media and among doctors. According to the change, it has been no longer necessary for a euthanasia wish to be confirmed in word or gesture. In other words, a previously drafted will would be sufficient for euthanasia, even if the patient is now incapacitated by dementia.
Schuurmans conducted interviews, consensus meetings and a survey of nearly 450 family physicians and doctors of geriatrics. It shows that the willingness among physicians to administer euthanasia is high, except in people with dementia. Doctors doubt the value of a previously drafted living will. They also have difficulty assessing unbearable suffering, a requirement for euthanasia. Even if someone has said beforehand, 'If I no longer recognize my loved ones, that is unbearable suffering.'
'With dementia we see that at the beginning, the patient suffers, however at a later stage especially the loved ones are affected,' Schuurmans explains. 'The suffering shifts, as it were. The family and loved ones increasingly start to interpret the suffering of the person with dementia. They have to watch someone deteriorating which gives a feeling of being powerless.'
Many doctors find euthanasia in dementia burdensome and this will continually increase, according to Schuurmans: ‘We see a trend in society that the professional judgment of doctors is less and less decisive. The importance of the patient's perception and independence is growing and gaining more influence on medical decisions. People want self-direction and that puts pressure on physicians.'
Schuurmans' research shows that general practitioners need more guidance, not only from SCEN doctors and end-of-life clinic doctors, but also from palliative or geriatric teams. They want support through consultation with other physicians and ethicists. In addition, training on living wills and legal frameworks would be helpful.
Patients and their loved ones also need better education. According to Schuurmans: ‘We need more social awareness about euthanasia in dementia. The assumption that a pre drafted living will guarantees euthanasia is a misconception and needs to be adjusted. I would like to change the term will statement to wish statement.’
Euthanasia in dementia is not a discussion of being pro or con, according to Schuurmans. ‘For an entire team it is important to empathize with a patient’s personal background and also to continue to examine alternatives. Many inconveniences or sufferings can be taken away with the current insights of psychosocial interventions, medication or sedation. Above all, we should not be preconceived when it comes to euthanasia.’
Image: sculpture by Jaap Schuurmans.
More information about this thesis defense
Thesis defense on September 11, 2023 at 16.30 hours by Jaap Schuurmans. Title dissertation: Euthanasia requests from patients with dementia. Exploring GPs’ attitudes, experiences, barriers and needs (available online after Sept. 11). Supervisor(s): Prof. Dr. Y.M.P. Engels, Prof. Dr. M.G.M. Olde Rikkert. The defense can be followed via this livestream.
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