Abstract
Abstract
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.
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.
| Original language | English |
|---|---|
| Pages (from-to) | 3688-3700 |
| Number of pages | 13 |
| Journal | Alzheimer's and Dementia |
| Volume | 19 |
| Issue number | 8 |
| DOIs | |
| Publication status | Published - 25 Apr 2023 |
Keywords
- dementia
- ethics
- euthanasia
- family
- PAS / physician-assisted suicide