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

To assess how families are involved in situations of euthanasia or physician assisted suicide (PAS) in dementia.

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).

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.

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.