Fear, incompetence and death. Empirical observations and ethical concerns about dying with advanced dementia | Amsterdam University Press Journals Online
2004
  1. Home
  2. A-Z Publications
  3. Filosofie & Praktijk
  4. Volume 45, Issue 1
  5. Article
Volume 45, Issue 1
  • ISSN: 0167-2444
  • E-ISSN: 2949-8651

Abstract

Abstract

In Den Hartogh’s (2023) a thorough philosophical analysis of the ethical considerations on suicide and other means of determining one’s own death is based on the empirical evidence published on the topic. In this contribution I want to emphasise the importance of concerns arising from the practice, and attempt to add to the analysis in his book by posing a number of questions arising from that practice. In order to so, I first elucidate a few empirical observations, some of which are well-known, others are just emerging. First, the fear of review and the possibility of legal sanctions physicians experience when contemplating active ending of life, particularly in ‘difficult cases’, including cases in which the patient is incompetent and thus unable to ask for active ending of life himself. Second, the on-going increase of continuous palliative sedation from 8% of all deaths in 2005 to 23% in 2021. (Van der Heide et al 2023, p.17) Taken together, these observations raise the question whether they might be related. It is clear that active ending of life for patients with advanced dementia is very difficult to obtain in the Netherlands, and it is equally clear that some of these patients are suffering. It is important to consider and research the practice and decision-making for continuous palliative sedation in these patients and how this practice should be evaluated ethically. The two questions I would like to highlight here are, first: how should we understand relatively early continuous palliative sedation in patients with advanced dementia and, second: what risks may arise from such a practice?

© Eva C. A. Asscher
Loading

Article metrics loading...

/content/journals/10.5117/FEP2024.1.009.ASSC
2024-04-01
2024-05-04
Loading full text...

Full text loading...

References

  1. Bolt, EE, Snijdewind, MC, Willems, DL, et al, “Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living?”Journal of Medical Ethics41 (2015) 592-598. doi: 10.1136/medethics-2014-102150. Epub 2015Feb18. PMID: 25693947.
     [Google Scholar]
  2. Den HartoghG, What Kind of Death, The Ethics of Determining One’s Own Death. New York and London: Routledge, 2023.
     [Google Scholar]
  3. Den Hartogh, G.A.“Een arrest dat om uitleg vraagt”, Rechtsgeleerd Magazijn Themis182 (2021) 1, 26-33. https://www.uitgeverijparis.nl/nl/reader/209169/1001530697.
     [Google Scholar]
  4. HarnasS, ToersenW, “Rapport meldactie ‘Wilsverklaring’”, Patiëntenfederatie Nederland, 2018.
     [Google Scholar]
  5. Heide A van der, Legemaate J, ONwuteaka-PhilipsenB, BosmaF, van DeldenH, MevisP, MinkK, PasmanR, PostmaL, RenckensS, van ThielG, van de VathorstS, Vierde evaluatieWet toetsing levensbeëindiging op verzoek en hulp bij zelfdoding. Den Haag: ZonwMW, 2023.
     [Google Scholar]
  6. Hendriks, S. A, SmalbruggeM, Hertogh, C.M.P.M, Van der Steen, J.T, “Dying With Dementia: Symptoms, Treatment, and Quality of Life in the Last Week of Life”, Journal of Pain and Symptom Management, 47 (2014) 4, 710-720https://doi.org/10.1016/j.jpainsymman.2013.05.015.
     [Google Scholar]
  7. Hertogh, C. M, de Boer, M. E, Dröes, R. M, Eefsting, J. A.“Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia for patients with dementia”, Am J Bioeth7 (2007) 4, 48-56. doi: 10.1080/15265160701220881. PMID: 17454999.
     [Google Scholar]
  8. Kivipelto, M, Ngandu, T, Laatikainen, T, Winblad, B, Soininen, H, Tuomilehto, J.“Risk score for the prediction of dementia risk in 20 years among middle aged people: a longitudinal, population-based study”, Lancet Neurol. 5 (2006) 9, 735-41. doi: 10.1016/S1474-4422(06)70537-3. PMID: 16914401.
     [Google Scholar]
  9. Kleijne, I, “Artsen starten petitie tegen euthanasie bij dementie”, Medisch Contact6-2-2017.
     [Google Scholar]
  10. KNMG“KNMG Standpunt / Beslissingen rond het levenseinde 2021”https://data.maglr.com/3230/issues/27397/360234/downloads/knmg_standpunt_levenseinde_interactieve_downloadversie.pdf.
  11. Lopez, Soria JA, González, H. M,. Léger, G. C, “Chapter 13 – Alzheimer’s disease”, Editor(s): Steven, T. Dekosky, SanjayAsthana, Handbook of Clinical Neurology, Elsevier, Volume 167,2019, Pages 231-255, ISSN 0072-9752, ISBN 9780128047668, https://doi.org/10.1016/B978-0-12-804766-8.00013-3.
     [Google Scholar]
  12. NHG, Richtlijn palliatieve sedatie2022https://palliaweb.nl/richtlijnen-palliatievezorg/richtlijn/palliatieve-sedatie.
  13. Ott, A, Breteler, M. M. B, Birkenhäger-Gillesse, E. B, van Harskamp, F, de Koning, I, Hofman, A, “De prevalentie bij ouderen van de ziekte van Alzheimer, vasculaire dementie en dementie bij de ziekte van Parkinson; het ERGO-onderzoek”, Ned Tijdschr Geneeskd. 140 (1996) 200-5.
     [Google Scholar]
  14. Ploem, M. C, Krol, E, AsscherE. C. A, Floor, T, Woestenburg, N. O. M, van de Vathorst, S, Gevers, J. K. M, Winter, H. B, “Evaluatie; Regeling beoordelingscommissie late zwangerschapsafbreking en levensbeëindiging bij pasgeborenen”, Den Haag: ZonMW, 2022.
     [Google Scholar]
  15. Regeling van de Minister van Veiligheid en Justitie en de Minister van Volksgezondheid, Welzijn en Sport van 11 december 2015, kenmerk 885614-145412-PG, houdende instelling van een commissie voor de beoordeling van gemelde gevallen van late zwangerschapsafbreking en levensbeëindiging bij pasgeborenen (Regeling beoordelingscommissie late zwangerschapsafbreking en levensbeëindiging bij pasgeborenen).
  16. Regionale Toetsingscommmissies euthanasie (RTE), Jaarverslag 2022. Utrecht2023.
  17. Regionale Toetsingscommissies euthanasie (RTE) Euthanasiecode 2022. Utrecht2022.
  18. Rozemond, N, “Een mensenrechtelijke interpretatie van de uitspraken van de Hoge Raad over euthanasie bij mensen met dementie”, Rechtsgeleerd magazijn Themis, april2021.
     [Google Scholar]
  19. Schuurmans et al. “Euthanasia in advanced dementia; the view of the general practitioners in the Netherlands on a vignette case along the juridical and ethical dispute”, BMC Family Practice22 (2021) 232https://doi.org/10.1186/s12875-021-01580-z.
     [Google Scholar]
  20. Stoeldraijer, L, van Duin, C, and Huisman, C, “Statistische trends, Bevolkingsprognose 2017–2060: 18,4 miljoen inwoners in 2060”, Statistische Trends CBS, 2017.
     [Google Scholar]
  21. Supreme Court of The Netherlands (Hoge Raad), 21April2020 ECLI:NL:HR:2020:712. https://deeplink.rechtspraak.nl/uitspraak?id=ECLI:NL:HR:2020:712
  22. Veldwijk-Rouwenhorst, A. E, Smalbrugge, M, Zuidema, S. U, Hanssen, S. A. J, Koopmans, R. T. C. M, Gerritsen, D. L, “Continuous Palliative Sedation in Nursing Home Residents With Dementia and Refractory Neuropsychiatric Symptoms”, Journal of the American Medical Directors Association22 (2021) 2. https://doi.org/10.1016/j.jamda.2020.11.004.
     [Google Scholar]
  23. Verenso, “Palliatieve sedatie bij refractair probleemgedrag bij mensen met dementie”, 2022. https://www.verenso.nl/kwaliteit/richtlijnen-en-praktijkvoering/richtlijnendatabase/palliatieve-sedatie-bij-refractair-probleemgedrag-bijmensen-met-dementie-handreiking.
  24. Willems, D. L, Verhagen, A. A, van Wijlick, E, “Committee End-of-Life Decisions in Severely Ill Newborns of Royal Dutch Medical Association. Infants’ best interests in end-of-life care for newborns”, Pediatrics, 134 (2014) 4, 1163-8. doi: 10.1542/peds.2014-0780. Epub 2014Sep22. PMID: 25246628.
     [Google Scholar]
http://instance.metastore.ingenta.com/content/journals/10.5117/FEP2024.1.009.ASSC
Loading
Keyword(s): advance directive; dementia; due care criteria; legal sanctions; palliative sedation; review
This is a required field
Please enter a valid email address
Approval was a Success
Invalid data
An Error Occurred
Approval was partially successful, following selected items could not be processed due to error