Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-05T07:48:47.523Z Has data issue: false hasContentIssue false
  • English
  • Français

Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands

Published online by Cambridge University Press:  30 May 2018

MARIJE BROUWER ,
ELS MAECKELBERGHE ,
WILLEMIEN DE WEERD  and
EDUARD VERHAGEN
Get access Rights & Permissions [Opens in a new window]

Abstract:

In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations—children between 1 and 12 years old—is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.

Keywords

The Netherlandspalliative careend of lifenewbornpediatriceuthanasia
Type
Special Section: Bioethics Beyond Borders
Information
Cambridge Quarterly of Healthcare Ethics , Volume 27 , Issue 3 , July 2018 , pp. 376 - 384
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Notes

1. Government of the Netherlands. Wet Toetsing Levensbeëindiging op Verzoek en Hulp bij Zelfdoding [Termination of Life on Request and Assisted Suicide Act]. 2014; available at: http://wetten.overheid.nl/BWBR0012410/2014-02-15 (last accessed 26 July 2016).

2. Government of the Netherlands. Euthanasia and newborn infants. 2017; available at: https://www.government.nl/topics/euthanasia/contents/euthanasia-and-newborn-infants (last accessed 2 Jan 2018).

3. Verhagen, EEE. The Groningen protocol—euthanasia in severely ill newborns. New England Journal of Medicine 2005;352(10):959–62.CrossRefGoogle ScholarPubMed

4. Bos AP, Verhagen AAE, de Vries MC. Standpunt NVK levensbeëindiging kinderen 1-12 jaar: een pleidooi voor onderzoek [NVK position paper: euthanasia in children 1-12, a call for research]. June 19, 2015; available at: http://www.nvk.nl/Nieuws/Dossiers/DossierLevenseindejongekinderen.aspx (last accessed 25 June 2016).

5. Although the NVK guidelines focused on active ending of life for children in general, the topic of the political discussion was euthanasia for children. However, active ending of life without a request on the part of the patient is an important part of the discussion here, which is why this article addresses active ending of life for children between 1 and 12 years old in general.

6. NVK. Richtlijn Palliatieve Zorg voor Kinderen [Guidelines on Palliative Care for Children]. 2018; available at: http://richtlijnendatabase.nl/richtlijn/palliatieve_zorg_voor_kinderen (last accessed 2 Jan 2018).

7. Government of the Netherlands. Palliative sedation: a normal medical procedure. 2017; available at: https://www.government.nl/topics/euthanasia/contents/palliative-sedation-a-normal-medical-procedure (last accessed 2 Jan 2018).

8. See note 2, Government of the Netherlands 2017.

9. See note 1, Termination of Life on Request and Assisted Suicide Act 2001 2014.

10. See note 2, Government of the Netherlands 2017.

11. See note 3, Verhagen 2005.

12. Government of the Netherlands. Article 40, Wetboek van Strafrecht [Criminal Code]. n.d.; available at: http://wetten.overheid.nl/BWBR0001854/2016-07-20-boekEerste (last accessed 20 July 2016).

13. HR. NJ 1986, 106 (Schoonheim). November 27, 1984.

14. See note 6, NVK 2018, at 40.

15. See note 6, NVK 2018, at 5.

16. See note 6, NVK 2018, at 41.

17. World Health Organization. Fact Sheet Palliative Care. 2015; available at: http://www.who.int/mediacentre/factsheets/fs402/en/ (last accessed 7 January 2016).

18. See note 6 NVK 2018, at 41.

19. See note 6, NVK 2018, at 41.

20. See note 6, NVK 2018, at 144.

21. See note 6, NVK 2018, at 160.

22. See note 6, NVK 2018, at 149–50.

23. See note 1, Termination of Life on Request and Assisted Suicide Act 2001 2014.

24. See note 2, Government of the Netherlands 2017.

25. See note 3, Verhagen 2005.

26. See note 6, NVK 2018, at 42.

27. See note 6, NVK 2018, at 160.

28. See note 6, NVK 2018, at 170.

29. de Vos, MA, van der Heide, A, Maurice-Stam, H, Brouwer, OF, Plotz, FB, Schouten-van Meeteren, AY, et al. The process of end-of-life decision-making in pediatrics: a national survey in the Netherlands. Pediatrics 2011;127(4):e1004–12.CrossRefGoogle ScholarPubMed

30. de Vos, MA, Bos, AP, Plotz, FB, van Heerde, M, de Graaff, BM, Tates, K, et al. Talking with parents about end-of-life decisions for their children. Pediatrics 2015;135(2):e465–76.CrossRefGoogle ScholarPubMed

31. Carter, BS. Why Palliative care for children is preferable to euthanasia. The American Journal of Hospice & Palliative Care 2016;33(1):5–7.CrossRefGoogle ScholarPubMed