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

References

• Anderson, J. G., Eppes, A., & O’Dwyer, S. T. (2019). ‘Like Death is Near’: Expressions of suicidal and homicidal ideation in the blog posts of family caregivers of people with dementia. Behavioral Sciences (Basel, Switzerland), 9(3). https://doi.org/10.3390/bs9030022
   PubMedGoogle Scholar
• Andriessen, K., Krysinska, K., Castelli Dransart, D. A., Dargis, L., & Mishara, B. L. (2020). Grief after euthanasia and physician-assisted suicide: A systematic review. Crisis, 41(4), 255–272. https://doi.org/10.1027/0227-5910/a000630
   PubMedGoogle Scholar
• Boer, T. (2021). Leven met euthanasie: Geliefden vertellen over hun ervaringen. Kok Boekencentrum Uitgevers.
   Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise & Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
   Web of Science ®Google Scholar
• Brinkman‐Stoppelenburg, A., Evenblij, K., Pasman, H. R. W., Delden, J. J. M., Onwuteaka‐Philipsen, B. D., & Heide, A. (2020). Physicians’ and public attitudes toward euthanasia in people with advanced dementia. Journal of the American Geriatrics Society, 68(10), 2319–2328. https://doi.org/10.1111/jgs.16692
   PubMed Web of Science ®Google Scholar
• Coers, D. O., de Boer, M. E., Sizoo, E. M., Smalbrugge, M., Leget, C. J. W., & Hertogh, C. M. P. M. (2023). Dealing with requests for euthanasia in incompetent patients with dementia. Qualitative research revealing underexposed aspects of the societal debate. Age & Ageing, 52(1), afac310. https://doi.org/10.1093/ageing/afac310
   PubMed Web of Science ®Google Scholar
• Daskal, F. C., Hougham, G. W., & Sachs, G. A. (1999). Physician-assisted suicide: Interviews with patients with dementia and their families. Annals of Long Term Care, 7(8), 293–298.
   Google Scholar
• de Boer, M. E., Dröes, R.-M., Jonker, C., Eefsting, J. A., & Hertogh, C. M. P. M. (2011). Advance directives for euthanasia in dementia: How do they affect resident care in Dutch nursing homes? Experiences of physicians and relatives. Journal of the American Geriatrics Society, 59(6), 989–996. https://doi.org/10.1111/j.1532-5415.2011.03414.x
   PubMed Web of Science ®Google Scholar
• Dees, M. K., Vernooij-Dassen, M. J., Dekkers, W. J., Elwyn, G., Vissers, K. C., & van Weel, C. (2013). Perspectives of decision-making in requests for euthanasia: A qualitative research among patients, relatives and treating physicians in the Netherlands. Palliative Medicine, 27(1), 27–37. https://doi.org/10.1177/0269216312463259
   PubMed Web of Science ®Google Scholar
• Den Hartogh, G. A. (2018). De wil van de wilsonbekwame patiënt: Commentaar op een uitspraak van het Regionaal Tuchtcollege voor de Gezondheidszorg te Den Haag. Tijdschrift Voor Gezondheidsrecht, 42(5), 431–454. https://doi.org/10.5553/TvGR/016508742018042005005
   Google Scholar
• Gastmans, C., & De Lepeleire, J. (2010). Living to the bitter end? A personalist approach to euthanasia in persons with severe dementia. Bioethics, 24(2), 78–86. https://doi.org/10.1111/j.1467-8519.2008.00708.x
   PubMed Web of Science ®Google Scholar
• Goldberg, R., Nissim, R., An, E., & Hales, S. (2021). Impact of medical assistance in dying (MAiD) on family caregivers. BMJ Supportive & Palliative Care, 11(1), 107–114. https://doi.org/10.1136/bmjspcare-2018-001686
   PubMed Web of Science ®Google Scholar
• Heide van der, A., ZonMw. (2023). Vierde evaluatie Wet levensbeëindiging op verzoek en hulp bij zelfdoding.
   Google Scholar
• Hertogh, C. M., & Ribbe, M. W. (1996). Ethical aspects of medical decision-making in demented patients: A report from the Netherlands. Alzheimer Disease & Associated Disorders, 10(1), 11–19. https://doi.org/10.1097/00002093-199603000-00004
   PubMed Web of Science ®Google Scholar
• Holmes, S., Wiebe, E., Shaw, J., Nuhn, A., Just, A., & Kelly, M. (2018). Exploring the experience of supporting a loved one through a medically assisted death in Canada. Canadian Family Physician Medecin De Famille Canadien, 64(9), e387–e393.
   PubMed Web of Science ®Google Scholar
• Kimsma, G. K., & van Leeuwen, E. (2007). The role of family in euthanasia decision making. HEC Forum: An Interdisciplinary Journal on Hospitals’ Ethical & Legal Issues, 19(4), 365–373. https://doi.org/10.1007/s10730-007-9048-z
   PubMedGoogle Scholar
• Lemos Dekker, N. (2020). Timing death. Entanglements of time and value at the end of life with dementia in the Netherlands. Universiteit van Amsterdam.
   Google Scholar
• Lemos Dekker, N. (2021). Anticipating an unwanted future: Euthanasia and dementia in the Netherlands. Journal of the Royal Anthropological Institute, 27(4), 815–831. https://doi.org/10.1111/1467-9655.13429
   Web of Science ®Google Scholar
• Ortner, M., Riedl, L., Jox, R. J., Hartmann, J., Roßmeier, C., Dorn, B., Kehl, V., Egert-Schwender, S., Fischer, J., & Diehl-Schmid, J. (2021). Suicidal ideations and behavior in patients with young and late onset dementia. Frontiers in Neurology, 12, 647396. https://doi.org/10.3389/fneur.2021.647396
   PubMed Web of Science ®Google Scholar
• Roest, B., Trappenburg, M., & Leget, C. (2019). The involvement of family in the Dutch practice of euthanasia and physician assisted suicide: A systematic mixed studies review. BMC Medical Ethics, 20(1), 23. https://doi.org/10.1186/s12910-019-0361-2
   PubMedGoogle Scholar
• RTE jaarverslag 2020. (2021). Regional euthanasia review committee.
   Google Scholar
• RTE jaarverslag 2023. (2023). Regional euthanasia review committee.
   Google Scholar
• Scheeres‐Feitsma, T. M., Van Laarhoven, A. J. J. M. K., De Vries, R., Schaafsma, P., & Van Der Steen, J. T. (2023). Family involvement in euthanasia or physician assisted suicide and dementia: A systematic review. Alzheimer’s & Dementia, alz.13094. https://doi.org/10.1002/alz.13094
   Web of Science ®Google Scholar
• Snijdewind, M. C., van Tol, D. G., Onwuteaka-Philipsen, B. D., & Willems, D. L. (2014). Complexities in euthanasia or physician-assisted suicide as perceived by Dutch physicians and patients’ relatives. Journal of Pain & Symptom Management, 48(6), 1125–1134. https://doi.org/10.1016/j.jpainsymman.2014.04.016
   PubMed Web of Science ®Google Scholar
• Srinivasan, E. G. (2019). Bereavement and the oregon death with dignity act: How does assisted death impact grief? Death Studies, 43(10), 647–655. https://doi.org/10.1080/07481187.2018.1511636
   PubMed Web of Science ®Google Scholar
• Tomlinson, E., Spector, A., Nurock, S., & Stott, J. (2015). Euthanasia and physician-assisted suicide in dementia: A qualitative study of the views of former dementia carers. Palliative Medicine, 29(8), 720–726. https://doi.org/10.1177/0269216315582143
   PubMed Web of Science ®Google Scholar
• Tomlinson, E., & Stott, J. (2015). Assisted dying in dementia: A systematic review of the international literature on the attitudes of health professionals, patients, carers and the public, and the factors associated with these. International Journal of Geriatric Psychiatry, 30(1), 10–20. https://doi.org/10.1002/gps.4169
   PubMed Web of Science ®Google Scholar
• Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• Van Der Steen, J. T., Nakanishi, M., Van Den Block, L., Di Giulio, P., Gonella, S., In Der Schmitten, J., Sudore, R. L., Harrison Dening, K., Parker, D., Mimica, N., Holmerova, I., Larkin, P., Martins Pereira, S., Rietjens, J. A. C., & Korfage, I. J, & European Association for Palliative Care (EAPC). (2023). Consensus definition of advance care planning in dementia: A 33‐country Delphi study. Alzheimer’s & Dementia, alz.13526 https://doi.org/10.1002/alz.13526
   Web of Science ®Google Scholar
• Van Rickstal, R., De Vleminck, A., Chambaere, K., & Van den Block, L. (2023). People with young-onset dementia and their family caregivers discussing euthanasia: A qualitative analysis of their considerations. Patient Education & Counseling, 115, 107882. https://doi.org/10.1016/j.pec.2023.107882
   PubMed Web of Science ®Google Scholar
• Vandenbulcke, M., Dröes, R.-M., & Schokkaert, E. (Eds.) (2022). Dementia and society: An interdisciplinary approach. Cambridge University Press.
   Google Scholar
• Variath, C., Peter, E., Cranley, L., Godkin, D., & Just, D. (2020). Relational influences on experiences with assisted dying: A scoping review. Nursing Ethics, 27(7), 1501–1516. https://doi.org/10.1177/0969733020921493
   PubMed Web of Science ®Google Scholar