A family affair: Repeated interviews with people with dementia and a euthanasia wish and their families

Figures & data

Table 1. Participants.

Participant	Interviewed in	AED^a	Context	Situation is 2023
Victor	2019, 2022	Yes	Victor was a 76-year-old man and married for the second time. He had two children with his first wife. He was a managing director of a large international company. He traveled a lot for work as well as privately. He had always been pro euthanasia. He had had an advance directive for many years, which he updated when he was diagnosed with dementia. Victor lived with his wife in a small city. He received euthanasia in 2022. It was performed by his general practitioner, in his own home surrounded by his family. He donated his brain for scientific research. Main reasons^b: Autonomy, self-determination and taking responsibility not to burden his family.	Received euthanasia in 2022
Marie	2023		Wife of Victor. Present during first and second interview and interviewed individually shortly after Victor’s death.
Harry	2019, 2022	No	Harry is a 71-year-old retired police officer who lives with his wife in small village in a rural area. They have three children. When Harry was diagnosed with dementia, he immediately told his wife that he wanted euthanasia. A close friend who lived in a nursing home functioned as a negative example. However, he did not write an advance directive. Harry discussed his wishes with his physician once and feels that this is sufficient. He is letting life run its course and expects his wife to give the signal when it is time for euthanasia. Main reasons: Not wanting to be a burden to his wife and fear of deterioration and being dependent on others.	The right time for euthanasia has not yet arrived
Thea	2022		Wife of Harry. Present during first and second interview and interviewed individually.
Toos	2019	Yes	Toos was a 68-year-old retired nurse. She was married and had one son. She lived at home with her husband and in the last year of her life she visited a recreational daycare center twice a week. When diagnosed with a progressive type of dementia and aphasia, she immediately discussed euthanasia with her husband and wrote an advance directive. As a former nurse she was very aware of legislation and how it would affect her situation. She connected with the ‘end-of-life expertise center’, which provided support to her and her husband. She received euthanasia in 2021 in a hospital and donated her organs. Main reasons: Unnecessary suffering, self-determination and not wanting to be a burden to her family.	Received euthanasia in 2021
Harm	2022		Husband of Toos. Present during first interview and interviewed individually a year after Toos’ death.
Stien	2019	Yes	Stien is an 88-year-old woman. She comes from a long line of ministers and was married to a minister. Religion is important to her, also in how she perceives euthanasia. The topic of death was always freely and openly talked about in the family. It is something to look forward to and not something to fear. She has four sons and has been widowed for five years. Her husband suffered a sudden and progressive disease that also caused dementia. Stien has always had a liberal view on euthanasia, but the traumatic experience of her husband’s illness contributed to her writing an advance directive with the help of her sons. During the first interview, Stien lived at home with help from family, neighbors, and church members. Three years later, she was admitted to a nursing home because her increasing care needs could no longer be met by her large network. Main reasons: unnecessary suffering, self-determination, and no hope for a cure.	Too late to meet the required rules of due care
Ralph	2023		Son of Stien. Present during first interview and individually interviewed.
Mark	2019	Yes	Mark is a 68-year-old retired owner of an agricultural family business. He is married and has three children. When he was diagnosed with dementia, he decided he wanted euthanasia and talked about it with his wife. At a later stage, they involved their children in the discussion. There is a great fear of a future with (progressing) dementia. Together with his wife he wrote an advance directive, discussed it with his physician and dementia case manager and joined a Right-to-Die association. When contacted after three years, Mark was still living at home with his wife. He had withdrawn his request for euthanasia. His wife stated that life proved to be difficult, especially for her, but also bearable. The wish to die had faded. Main reasons: self-determination, self-awareness, and fear of not recognizing his family.	Withdrew euthanasia request
Alies	–		Wife of Mark. She and a son were present during the interview. Only brief telephone contact in 2022.
Marion	2019	Yes	Marion is a 75-year-old retired preschool director. She is married and lives at home with her husband in a large city. They have two daughters. When Marion was diagnosed with Alzheimer’s disease, she immediately said to her husband that she wanted euthanasia. Together with their daughters they wrote an advance directive. When reconnecting after three years, Marion still lived at home but was visiting a daycare center for people with dementia twice a week. Because Marion appeared to be happy and enjoying life, her family decided that euthanasia was no longer an option or necessary. Main reasons: self-determination, fear of losing decorum, and of not recognizing her children.	Family decided not to bring up the euthanasia request again
Jan	2023		Husband of Marion. Present during first interview and interviewed individually.
Ton	2019	Yes	Ton is a 53-year-old unemployed factory worker. He is married and has two children. Ton plays the organ in his local church and conducts the church choir. He found it difficult to hold on to a job because he forgot so much and made mistakes. After a period of diagnostic uncertainty, he was diagnosed with Alzheimer’s disease. Almost immediately after his diagnosis he wrote an advance directive. He describes people with dementia as ‘lumps of meat with no identity’. The prospect of unintentionally being nasty to his wife and not being able to communicate with people around him was unbearable. When (email) contact was made again after three years, Ton had withdrawn his euthanasia request. He wrote that the birth of two grandchildren had made his wish to die disappear. Main reasons: being independent, fear of losing communication and of not recognizing wife and children, not wanting to be a burden to family.	Withdrew euthanasia request
Jannie	–		Wife of Ton, not present at the interview.

^aAED advance euthanasia directive.

^bPresentation of main reasons, not necessarily in order of importance.