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Ashley, Two Born as One, and the Best Interests of a Child

Published online by Cambridge University Press:  20 January 2016

GRANT GILLETT
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Abstract:

What is in the best interests of a child, and could that ever include interventions that we might regard as prima facie detrimental to a child’s physical well-being? This question is raised a fortiori by growth attenuation treatments in children with severe neurological disorders causing extreme developmental delay. I argue that two principles that provide guidance in generating a conception of best interests for each individual child yield the right results in such cases. The principles are as follows: the potentiality principle, whereby every child should be able to develop its potential and is entitled to receive certain help in doing so, and the principle of psychosomatic harmony, whereby every human being is entitled to treatment that is appropriate to or enables a life in which mind and body are in tune with each other. These principles indicate a certain response to what we can call Ashley-type cases and admit certain caveats.

Keywords

neurological disordergrowth retardationthe Ashley treatmentpotentialitypsychosomatic harmony
Type
Special Section: The Best Interests of a Child: Problematic Neuroethical Decisions
Information
Cambridge Quarterly of Healthcare Ethics , Volume 25 , Issue 1 , January 2016 , pp. 22 - 37
Copyright
Copyright © Cambridge University Press 2016 

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References

Notes

1. Gunther, DF, Diekema, DS. Attenuating growth in children with profound developmental disability. Archives of Pediatric and Adolescent Medicine 2006;160:1013–17.CrossRefGoogle ScholarPubMed

2. See Snelling J. Minors and contested medical-surgical treatment: Where are we with best interests? Cambridge Quarterly of Healthcare Ethics, forthcoming in 2016;25.

3. Diekema, DS, Fost, N. Ashley revisited: A response to the critics. American Journal of Bioethics 2010;10(1):30–44.CrossRefGoogle ScholarPubMed

4. Re A (children) (Conjoined Twins: Surgical Separation) [2001] Fam 147.

5. Queensland v. Nolan [2002] 1 Qd R 454, at 460.

6. See note 5, Queensland v. Nolan 2002, at 455.

7. See note 5, Queensland v. Nolan 2002, at 455.

8. Tooley, M. Abortion and infanticide. Philosophy and Public Affairs 1972;2:37Google Scholar; Singer, P. Practical Ethics. Cambridge: Cambridge University Press; 1979Google Scholar; Gillett, G. Young human beings: Metaphysics and ethics. In: Oderburg, DS, Laing, JA, eds. Human Lives. London: Macmillan; 1996:109–27.Google Scholar

9. See note 5, Queensland v. Nolan 2002, at 456.

10. Elliot, C. Attitudes, souls and persons: Children with severe neurological impairment. In: Elliot, C, ed. Slow Cures and Bad Philosophers: Essays on Wittgenstein, Medicine, and Bioethics. Durham, NC: Duke University Press; 2001:89–102.CrossRefGoogle Scholar

11. See note 5, Queensland v. Nolan 2002, at 458.

12. Dreger, AD. One of Us: Conjoined Twins and the Future of Normal. Cambridge, MA: Harvard University Press; 2004.Google Scholar

13. See note 5, Queensland v. Nolan 2002, at 457.

14. See note 5, Queensland v. Nolan 2002, at 460.

15. Such as Airedale NHS Trust v. Bland [1993] AC 789; Re G [1997] 2 NZLR 201; Re Quinlan 429 US 922 (1976); Re Guardianship of Schiavo 851 SO 2d 182 (2003).

16. Gillett, G. The unwitting sacrifice problem. Journal of Medical Ethics 2005;31:327–32.CrossRefGoogle ScholarPubMed

17. Honeybul S, Gillett GR, Ho KM, Janzen, C. Kruger, K.. Long term survival with an unfavourable outcome: A qualitative and ethical analysis. Journal of Medical Ethics 2014 June 25. doi:10.1136/medethics-2013-101960.

18. See note 12, Dreger 2004.

19. See note 3, Diekema, Fost 2010, at 30.

20. See note 3, Diekema, Fost 2010, at 30.

21. Liao, M, Savulescu, J, Sheehan, M. The Ashley treatment: Best interests, convenience, and parental decision-making. Hastings Center Report 2007;37(2):16–20.CrossRefGoogle ScholarPubMed Caplan, A,. Is Peter Pan treatment a moral choice? Debate over stunting a disabled child’s growth pits comfort against ethics. MSNBC website, January 5, 2007. Available at: http://www.msnbc.msn.com/id/16472931 (last accessed 29 Aug 2015).

22. Gillett, G. When two are born as one: The ethics of separating conjoined twins. Journal of Law and Medicine 2009;17:184–9.Google ScholarPubMed

23. Lindemann, Nelson H. What child is this? Hastings Center Report 2002;32(6):29–38.Google Scholar

24. See note 23, Gillett 2009, at 30.

25. Beecher, HK. Ethics and clinical research. New England Journal of Medicine 1966;274(24):1354–60.CrossRefGoogle ScholarPubMed

26. The New Zealand Crimes Act, section 151 http://www.legislation.govt.nz/act/public/1961/0043/latest/DLM329292.html (last accessed 10 May 2015http://www.legislation.govt.nz/act/public/1961/0043/latest/DLM329292.html (last accessed 10 May 2015) states: “Every one who has actual care or charge of a person who is a vulnerable adult and who is unable to provide himself or herself with necessaries is under a legal duty—(a) to provide that person with necessaries; and (b) to take reasonable steps to protect that person from injury.” Most legislatures have such a duty prescribed to caregivers and health professionals.

27. E.g., Diekema, Fost 2010 (see note 3); Liao et al. 2007 (see note 21).

28. Murray, T. The Worth of a Child. Berkeley: University of California Press; 1996, at 45.Google Scholar

29. Crossmaker, M. Behind locked doors—institutional sexual abuse. Sexuality and Disability 1991;9(3):201–19.CrossRefGoogle Scholar

30. Curry, M, Hassouneh-Phillips, , D. Johnstone-Silverberg, A. Abuse of women with disabilities; an ecological model and review. Violence against Women 2001;7(1):60–79.CrossRefGoogle Scholar

31. See note 3, Diekema, Fost 2010, at 37.

32. Danzer, G, Rose, M, Walter, M, Klapp, B. On the theory of individual health. Journal of Medical Ethics 2002;28:17–19.CrossRefGoogle ScholarPubMed

33. See note 3, Diekema, Fost 2010, at 32–3.

34. Henaghan, M. Can you feel the law tonight? Family law in action. Otago Law Review 2003;10(3):289–306, at 295.Google Scholar

35. See note 3, Diekema, Fost 2010, at 34.

36. See note 28, Murray 1996; see note 23, Lindemann Nelson 2002; Gillett G. Subjectivity and Being Somebody: Human Identity and Neuroethics. Exeter: Imprint Academic; 2008.

37. Wheeler, R. Gillick or Fraser? A plea for consistency over competence in children. British Medical Journal 2006;332Google ScholarPubMed:807; Douglas, G. The retreat from Gillick. Modern Law Review 1992;55:569–76.CrossRefGoogle ScholarPubMed

38. See note 1, Gunther, Diekema 2006, at 1015.

39. See note 3, Diekema, Fost 2010, at 36.

40. Hume D. A Treatise of Human Nature [1739–40]. In: Raphael, DD, ed. British Moralists 1650–1800. Indianapolis, IN: Hackett; 1991:510–11.Google Scholar

41. See note 3, Diekema, Fost 2010, at 38; Feinberg, J. The child’s right to an open future. In: Aiken, W, LaFollette, H, eds. Whose Child? Children’s Rights, Parental Authority, and State Power. Totowa, NJ: Rowman & Littlefield; 1980.Google Scholar

42. Gillett, G. The Mind and Its Discontents. 2nd ed.Oxford: Oxford University Press; 2009.CrossRefGoogle Scholar

43. Hacking, I. Rewriting the Soul. Princeton, NJ: Princeton University Press; 1995.Google Scholar

44. Schniederman, L, Jecker, N, Jonsen, A. Medical futility: Its meaning and ethical implications. Annals of Internal Medicine 1990;112:949–54CrossRefGoogle Scholar; Gillett, G. Minimally conscious states, deep brain stimulation and what is worse than futility. Journal of Bioethical Inquiry 2011;8(2):145–50.CrossRefGoogle Scholar

45. See note 22, Gillett 2009.

46. See note 37, Douglas 1992.

47. See note 3, Diekema, Fost 2010, at 38.

48. See note 21, Liao et al. 2007, at 19.

49. See note 21, Liao et al. 2007, at 17.

50. Jordan, J. Reshaping the “pillow angel”: Plastic bodies and the rhetoric of normal surgical solutions. Quarterly Journal of Speech 2009;95(1):20–42, at p20.CrossRefGoogle Scholar

51. As suggested by Liao et al. 2007 (see note 21) and discussed by Jordan 2009 (see note 50).

52. Gillett, G. Bioethics and the Clinic: Hippocratic Reflections. Baltimore, MD: Johns Hopkins University Press; 2004.Google Scholar See note 41, Feinberg 1980.

53. Duff, RA, Campbell, AGM. Moral and ethical dilemmas in the special-care nursery. New England Journal of Medicine 1973;289(17):890–4CrossRefGoogle ScholarPubMed, at 892.

54. Levinas, E. Basic Philosophical Writings. Bloomington: Indiana University Press; 1996.Google Scholar

55. Nussbaum, M. Love’s Knowledge. Oxford: Oxford University Press; 1990Google Scholar; Gillett, G. Sanctity of life, a sense of life, and good endings. QUT Law and Justice Journal 2006;6(2):243–52.Google Scholar

56. Lawrence, A. Factors associated with satisfaction or regret following male to female sex reassignment surgery. Archives of Sexual Behaviour 2003;32(4):299–314.CrossRefGoogle ScholarPubMed

57. This value can also be applied to “wannabee amputees,” as in Dyer’s article—Dyer C. Surgeon amputated healthy legs. British Medical Journal 2000;320:332—but it is a procedure that has attracted a great deal of controversy.

58. Frader, J, Alderson, P, Asch, A, Aspinall, C, Davis, D, Dreger, A, et al Health care professionals and intersex conditions. Archives of Paediatrics and Adolescent Medicine 2004;158:426–9.CrossRefGoogle ScholarPubMed

59. See note 3, Diekema, Fost 2010, at 35.

60. See note 23, Lindemann Nelson 2002.

61. See note 21, Liao et al. 2007; see note 3, Diekema, Fost 2010.

62. See note 42, Gillett 2009, at 70.

63. Philips, K. Quality of life for patients with body dysmorphic disorder. Journal of Nervous and Mental Diseases 2000;188(3):170–5.CrossRefGoogle Scholar

64. Gillett, G, Gillett, M. Intent, the ethos of a caring society, and justice. Journal of Law and Medicine 2008;16(2):209–15.Google ScholarPubMed

65. Glover, J. Causing Death and Saving Lives. London: Penguin; 1977.Google Scholar

66. See note 23, Lindemann Nelson 2002; see note 34, Henaghan 2003.