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

This study examines the reasons of people with dementia request euthanasia and how these reasons change over time with a special focus on reasons related to family. In addition, it examines how family relates to their loved one's euthanasia wish. Seven people with dementia and a euthanasia wish in the Netherlands were interviewed, and three years later, two of them and five family members were interviewed again. Four themes were identified using thematic analyses: (1) Protecting the relationship from the impact of dementia; (2) Private domain as the primary setting to discuss euthanasia; (3) Implicit expectation to respect and agree with the euthanasia wish; (4) Experienced responsibilities of family regarding the euthanasia wish. Professionals should be aware of the position of family and the interrelatedness of the person's concern for family happiness and families' moral commitment to agree and support the wish.

Commentary: Can an effective end-of-life intervention for advanced dementia be viewed as moral?

We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia.

Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including "bi-directional empathic suffering." We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.

Family involvement in euthanasia or Physician Assisted Suicide and dementia: A systematic review.

OBJECTIVE: To assess how families are involved in situations of euthanasia or physician assisted suicide (PAS) in dementia. DESIGN: Systematic review searching literature in nine databases from inception up to October 2021. We included studies on family involvement in euthanasia from the perspective of persons with dementia and family caregivers. Themes were formulated through thematic analysis. The design was registered at Prospero (CRD42022298215). RESULTS: We assessed 215 of 4038 studies in full text; 19 met the inclusion criteria of which 13 empirical studies. Themes included for people with dementia: being a burden; stage of dementia, and permissibility of euthanasia/PAS. Themes for family were the burden of care, responsibility toward the euthanasia or PAS wish, permissibility of euthanasia/PAS. CONCLUSION: The wish for euthanasia/PAS arises in situations of burdensome care and fear of future deterioration. The family feels entrusted with the responsibility to enact upon the death wish. In shaping this responsibility, four roles of family can be distinguished: carer, advocate, supporter, and performer. Family as in need of support themselves is understudied.