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Commentary: Whose suffering?

Published online by Cambridge University Press:  02 June 2020

MARTIN BUIJSEN
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Extract

Marije Brouwer et al. contend that collecting treatment experiences of newborns with life-threatening conditions can support both caregivers and parents in making difficult end-of-life decisions. They illustrate the importance of that understanding by narrating the heartbreaking story of the sisters Roos and Noor, two newborns in the last stage of their lives.1

Type
Special Section: Death, Dilemmas, and Decisions
Information
Cambridge Quarterly of Healthcare Ethics , Volume 29 , Issue 3 , July 2020 , pp. 346 - 353
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Notes

1. Brouwer, M, Maeckelberghe, E, ten Brincke, HJ, Meulenbeek-ten Brincke, M, Verhagen E. Pediatric Brain Tumors: Narrating suffering and end-of-life decisionmaking. Cambridge Quarterly of Healthcare Ethics 2020;29(3):338–45 CrossRefGoogle ScholarPubMed.

2. See note 1, Brouwer et al. 2020.

3. Late Pregnancy Termination and Termination of Lives of Newborns Regulation. Staatscourant 2016, 3145; available at https://wetten.overheid.nl/BWBR0037570/2018-08-01/ (last accessed 5 May 2019).

4. Explanatory annex to Late Pregnancy Termination and Termination of Lives of Newborns Regulation. Staatscourant 2016, 3145:5; available at https://wetten.overheid.nl/BWBR0037570/2018-08-01/ (last accessed 5 May 2019).

5. See note 3, Late Pregnancy Termination and Termination of Lives of Newborns Regulation, Article 7.

6. Burials and Cremations Act, Article 1, paragraph 1; available at https://wetten.overheid.nl/BWBR0005009/2018-08-01/ (last accessed at 5 May 2019).

7. Burials and Cremations Act, Article 7, paragraph 3.

8. Burials and Cremations Act, Article 10, paragraph 1.

9. Directive on prosecution of late pregnancy termination and terminition of life of newborns. Staatscourant 2017, 69445:1–3; available at https://wetten.overheid.nl/BWBR0040270/2017-12-01/ (last accessed 5 May 2019).

10. Directive on prosecution of late pregnancy termination and terminition of life of newborns. Staatscourant 2017, 69445:3.

11. See note 3, Late Pregnancy Termination and Termination of Lives of Newborns Regulation, Article 3, paragraph 1.

12. See note 9, Directive on prosecution of late pregnancy termination and terminition of life of newborns, 2017, at 4.

13. See note 9, Directive on prosecution of late pregnancy termination and terminition of life of newborns, 2017, at 4.

14. Termination of Life on Request and Assisted Suicide (Review Procedures) Act, Article 2, paragraph 1, subsection b; available at https://wetten.overheid.nl/BWBR0012410/2018-08-01/ (last accessed 5 May 2019).

15. See note 3, Late Pregnancy Termination and Termination of Lives of Newborns Regulation, Article 7, subsection a.

16. Regional euthanasia review committees. EuthanasieCode 2018, at 22; available at https://www.euthanasiecommissie.nl/de-toetsingscommissies/uitspraken/brochures/brochures/euthanasiecode/2018/euthanasia-code-2018/ (last accessed 5 May 2019).

17. See note 16, Regional euthanasia review committees, 2018, at 22.

18. See note 16, Regional euthanasia review committees, 2018, at 22–3.

19. See note 16, Regional euthanasia review committees, 2018, at 23.

20. Cassell, EJ. The Nature of Suffering and the Goals of Medicine. New York, NY: Oxford University Press; 1991:33Google Scholar.

21. See note 1, Brouwer et al. 2020.

22. Van de Vathorst, S, Gevers, JKM, Van der Heide, A, Bolt, LLE, Ten Cate, K. Evaluatie Regeling centrale deskundigencommissie late zwangerschapsafbreking en levensbeëindiging bij pasgeborenen [Evaluation Regulation on Central Expert Committee Late Pregnancy Termination and termination of Life of Newborns]. Den Haag: ZonMw; 2013:13Google Scholar; available at https://publicaties.zonmw.nl/evaluatie-regeling-centrale-deskundigencommissie-late-zwangerschapsafbreking-en-levensbeeindiging-bij-pasgeborenen/ (last accessed 5 May 2019).

23. Central Expert Committee Late Pregnancy Termination and Termination of Life of Newborns 2009 December 1; 2009/LP/001; available at https://www.lzalp.nl/procedure/documenten/publicaties/websitepublicaties/adviezen/2009/2009lp01/ (last accessed 5 May 2019).

24. See note 23, Central Expert Committee Late Pregnancy Termination and Termination of Life of Newborns 2009, at 2.

25. See note 23, Central Expert Committee Late Pregnancy Termination and Termination of Life of Newborns 2009, at 3.

26. See note 23, Central Expert Committee Late Pregnancy Termination and Termination of Life of Newborns 2009, at 8.

27. Assessment Committee on Late Pregnancy Termination and Termination of Life of Newborns Annual Report 2017, at 6–8; available at https://www.lzalp.nl/documenten/publicaties/websitepublicaties/jaarverslagen/2017/jaarverslag-2017/ (last accessed 5 May 2019). Till date, two cases have been reported, not three as stated by Brouwer et al. in note 1.

28. See note 27, Assessment Committee on Late Pregnancy Termination and Termination of Life of Newborns 2017, at 6.

29. See note 27, Assessment Committee on Late Pregnancy Termination and Termination of Life of Newborns 2017, at 6-7.

30. See note 27, Assessment Committee on Late Pregnancy Termination and Termination of Life of Newborns 2017, at 6.

31. See note 1, Brouwer et al. 2020.

32. See note 1, Brouwer et al. 2020.

33. See note 27, Assessment Committee on Late Pregnancy Termination and Termination of Life of Newborns 2017, at 6.

34. See note 27, Assessment Committee on Late Pregnancy Termination and Termination of Life of Newborns 2017, at 7.

35. Medical Disciplinary Court, The Hague 1995 Mar 22, TvGR 1996/8.

36. Court of Appeal Amsterdam 1995 Nov 7, TvGR 1996/1.

37. See note 27, Assessment Committee on Late Pregnancy Termination and Termination of Life of Newborns 2017, at 6.

38. See note 1, Brouwer et al. 2020.

39. See note 27, Assessment Committee on Late Pregnancy Termination and Termination of Life of Newborns 2017, at 6.