Family has role in euthanasia wish of people with dementia Recognizing role of family and relatives is important

Carer, advocate or supporter: family members can assume different roles in a euthanasia wish of patients with dementia. It is important that patients, family members and other relatives and professional caregivers are aware of this. Researchers from Radboud university medical center and others write this in a review article in Alzheimer's & Dementia.

In 2022, 8720 people in the Netherlands received euthanasia, according to the annual report of the Regional Euthanasia Review Committee RTE. 288 cases of euthanasia involved patients with dementia. Euthanasia may only be performed under strict conditions. For example, it can only be done at the patient's voluntary and well-considered request. Someone with early dementia can often still request euthanasia themselves. If the disease is at a more advanced stage, a patient may no longer have sufficient capacity to request euthanasia. An advance directive including a euthanasia request, drafted when a patient was still able to express his or her will, may then suffice. 

The role of family and other relatives 

Euthanasia assumes the patient's autonomy. Others, such as family members and other relatives, do not formally have a voice in this. In practice, however, they do play a role. Jenny van der Steen, researcher at the Department of Primary and Community Care at Radboudumc, explains: 'People with early dementia are often well aware of the consequences of the disease and a wish for euthanasia for relatives, often their children. Patients fear loss of their independence and dignity. They fear the future, in which they will become more needy and have to rely on relatives. They do not want to burden their relatives.'

This implies relatives such as family are involved in the euthanasia wish. They may struggle with a euthanasia request, sometimes having made a promise or commitment that makes them feel (co-)responsible for carrying out the wish of the patient. Little research has been done on this. Based on an analysis of the existing literature, the researchers formulate four different roles that family members can assume. These are:

• The carer. Family starts in the role of carer. They focus on taking care of the person with dementia and feel responsible for providing good quality care. The request for euthanasia or physician-assisted suicide can feel as an expression of the lack of good care and implicitly exposes the shortcomings of the carer. Sometimes adhering to a request is morally or legally not an option for them. When it is an option, a smaller part of carers can become advocates.
• The advocate. Advocates feel responsible to be the voice of the person with dementia. The latter sometimes made his/her wishes clear when still competent. Being the voice means initiating the conversation about euthanasia or PAS with physicians. The autonomy and self-determination of the person concerned is the most important value. A smaller part of advocates, in addition to being carers, can become active supporters.
• The supporter. Supporters actively support the person with the wish to die. Here the issue of whether one agrees becomes most acute. Yet being a supporter does not necessarily mean agreeing with the death wish. They take concrete actions as an expression of their respect for the wishes of a loved one; making doctor appointments, filling in forms or writing an advance directive. A smaller part of supporters, in addition to being carers and advocates, can become performers. 
• The performer. Performers are willing, or say they are willing, to actively play a part in the (illegal) execution of euthanasia or PAS by (considering) providing or administering lethal medication themselves.

'Professional caregivers are sometimes concerned about relatives such as family members who want to talk about or insist on the euthanasia of a loved one with dementia,' says PhD student Trijntje Scheeres-Feitsma. 'This research shows that the role of family members is more complicated than people may think at first glance. Implicit expectations and the moral responsibility to do what your loved one asked you to do or what you agreed upon together can weigh heavily.'

Have a conversation

As a result of their study, the researchers provide several recommendations for people with dementia and a desire for euthanasia, their relatives and professional caregivers. Van der Steen advises relatives and caregivers to start the conversation. 'A conversation without the patient might be useful. Relatives then sometimes dare to speak out more.' Involving, for example, a spiritual counselor or ethicist can also be of value. 

Finally, Van der Steen argues for more education and training for caregivers in speaking about the last phase of life, also focusing on the role of family members. 'Some doctors struggle with the tension between doing justice to the patient's autonomy and the major role played by family and other relatives. Discussing this with patients and relatives is actually very important for a good quality of life in the last phase of life.

About this publication

This article appeared in Alzheimer's & Dementia: Family involvement in euthanasia or Physician- Assisted Suicide and dementia: A systematic review - Trijntje Scheeres-Feitsma, Angela Keijzer-van Laarhoven, Ralph de Vries, Petruschka Schaafsma, Jenny van der Steen. DOI: 10.1002/alz.13094.

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