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Growth Attenuation Therapy

Views of Parents of Children with Profound Cognitive Impairment

Published online by Cambridge University Press:  20 January 2016

NIKKI KERRUISH
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Abstract:

The “Ashley treatment” has provoked much debate and remains ethically controversial. Given that more children are being referred for such treatment, there remains a need to provide advice to clinicians and ethics committees regarding how to respond to such requests. This article contends that there is one particularly important gap in the existing literature about growth attenuation therapy (GAT) (one aspect of the Ashley treatment): the views of parents of children with profound cognitive impairment (PCI) remain significantly underrepresented. The article attempts to redress this balance by analyzing published accounts both from parents of children who have received GAT and from parents who oppose treatment. Using these accounts, important points are illuminated regarding how parents characterize benefits and harms, and their responsibilities as surrogate decisionmakers. This analysis could contribute to decisionmaking about future requests for GAT and might also have wider relevance to healthcare decisionmaking for children with PCI.

Keywords

Ashley treatmentgrowth attenuation therapycognitive impairmentparentchilddecisionmaking
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. 70 - 83
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: A new approach to an old dilemma. Archives of Pediatric and Adolescent Medicine 2006;160(10):1013–17. PubMed PMID: 17018459.CrossRefGoogle Scholar

2. Tan, N, Brassington, I. Agency, duties and the “Ashley treatment.” Journal of Medical Ethics 2009;35(11):658–61. PubMed PMID: 19880700.CrossRefGoogle ScholarPubMed

3. Ouellette AR. Growth attenuation, parental choice, and the rights of disabled children: Lessons from the Ashley X case. Houston Journal of Health and Policy 2008 Jan 1;8:207 [cited 2011 Nov 24]; available via Social Science Research Network at http://ssrn.com/abstract=1084903 (last accessed 29 Nov 2014).

4. Diekema, DS, Fost, N. Ashley revisited: A response to the critics. American Journal of Bioethics 2010;10(1):30–44. Epub 2010/01/16. doi:10.1080/15265160903469336. PubMed PMID: 20077335.CrossRefGoogle ScholarPubMed

5. Ashley’s Parents. Pillow Angel Website; [cited 2014 Nov 10]; available at http://www.pillowangel.org (last accessed 29 Nov 2014).

6. Pollock A, Fost N, Allen D. Growth attenuation therapy: Practice and perspectives of pediatric endocrinologists. Pediatric Academic Societies and Asian Society for Pediatric Research Joint Meeting, Vancouver Convention Centre; 2014 May 3–6.

7. Allen, DB, Kappy, M, Diekema, D, Fost, N. Growth-attenuation therapy: Principles for practice. Pediatrics 2009;123(6):1556–61. PubMed PMID: 19482768.CrossRefGoogle ScholarPubMed

8. Wilfond BS, Miller PS, Korfiatis C, Diekema DS, Dudzinski DM, Goering S, et al. Navigating growth attenuation in children with profound disabilities. Children’s interests, family decision-making, and community concerns. Hastings Center Report 2010;40(6):27–40. PubMed PMID: 21155109.

9. Isaacs, D, Tobin, B, Hamblin, J, Slaytor, E, Donaghue, KC, Munns, C, et al. Managing ethically questionable parental requests: Growth suppression and manipulation of puberty. Journal of Paediatrics and Child Health, 2011;47(9):581–4. PubMed PMID: 21951436.CrossRefGoogle ScholarPubMed

10. AAIDD. Growth Attenuation: Position Statement of AAIDD; 2012 [cited 2014 Nov 10]; available at http://aaidd.org/news-policy/policy/position-statements/growth-attenuation (last accessed 1 Dec 2014).

11. See note 8, Wilfond et al. 2010.

12. Snelling, J. Re-visiting Re X: Hysterectomy, removal of reproductive capacity and the severely intellectually disabled child in New Zealand. Journal of Law and Medicine 2015;22:679–97Google Scholar

13. Diekema, DS. Revisiting the best interest standard: Uses and misuses. Journal of Clinical Ethics 2011;22(2):128–33. Epub 2011/08/16. PubMed PMID: 21837884.Google ScholarPubMed

14. Downie, RS, Randall, F. Parenting and the best interests of minors. Journal of Medicine & Philosophy 1997;22(3):219.CrossRefGoogle ScholarPubMed

15. Wilfond, B, Ross, LF. From genetics to genomics: Ethics, policy, and parental decision-making. Journal of Pediatric Psychology 2009;34(6):639–47. PubMed PMID: 18647793.CrossRefGoogle ScholarPubMed

16. Diekema, DS. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theoretical Medicine and Bioethics 2004;25(4):243–64. PubMed PMID: 15637945.CrossRefGoogle ScholarPubMed

17. See note 14, Downie 1997.

18. Kuo, DZ, Houtrow, AJ, Arango, P, Kuhlthau, KA, Simmons, JM, Neff, JM. Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal 2012;16(2):297–305. doi:10.1007/s10995-011-0751-7. PubMed PMID: 21318293; PubMed Central PMCID: PMC3262132.CrossRefGoogle ScholarPubMed

19. Peace, W, Roy, C. Scrutinizing Ashley X: Presumed medical “solutions” vs. real social adaptation. Journal of Philosophy, Science and Law 2014;14:33–52.CrossRefGoogle Scholar

20. Kittay, EF. Forever small: The strange case of Ashley X. Hypatia 2011;26(3):610–31.CrossRefGoogle Scholar

21. Kittay EF. No more Ashley treatments. The Blog: International Journal of Feminist Approaches to Bioethics; 2013 [cited 2014]; available at http://www.ijfab.org/blog/no-more-ashley-treatments/ (last accessed 29 Nov 2014).

22. Pilkington E. The Ashley treatment: “Her life is as good as we can possibly make it.” Guardian 2012. http://www.theguardian.com/society/2012/mar/15/ashley-treatment-email-exchange (last accessed 29 Nov 2014).

23. Chisholm D. Let’s talk about Charley. North and South 2014 June:66–75.

24. McVeigh K. The “Ashley treatment”: Erica’s story. Guardian 2012 Mar 16. http://www.theguardian.com/society/2012/mar/16/ashley-treatment-ericas-story (last accessed 29 Nov 2014).

25. McVeigh K. Growth attenuation treatment: Tom, the first boy to undergo procedure. Guardian 2012 Mar 16. http://www.theguardian.com/society/2012/mar/16/growth-attenuation-treatment-toms-story (last accessed 29 Nov 2014).

26. See note 5, Ashley’s parents 2014.

27. See note 22, Pilkington 2012.

28. See note 23, Chisholm 2014; note 24, McVeigh 2012; and note 25, McVeigh 2012.

29. See note 8, Wilfond et al. 2010.

30. Single Dad. The case for not mutilating your child. Baker J, ed. Psychology Today 2012 Aug 31 [cited 2014]; available at http://www.psychologytoday.com/blog/the-love-wisdom/201208/the-case-not-mutilating-your-child (last accessed 29 Nov 2014); and see note 8, Wilfond et al. 2010; note 19, Peace 2014; and note 20, Kittay 2011.

31. See note 23, Chisholm 2014.

32. See note 22, Pilkington 2012.

33. See note 25, McVeigh 2012.

34. See note 24, McVeigh 2012.

35. Day, SM, Strauss, DJ, Vachon, PJ, Rosenbloom, L, Shavelle, RM, Wu, YW. Growth patterns in a population of children and adolescents with cerebral palsy. Developmental Medicine & Child Neurology 2007;49:167–71 also available at http://www.lifeexpectancy.org/articles/GrowthCharts.shtml (last accessed 29 Nov 2014).CrossRefGoogle Scholar

36. See note 22, Pilkington 2012.

37. See note 23, Chisholm 2014, at 73.

38. See note 22, Pilkington 2012.

39. See note 23, Chisholm 2014, at 71.

40. See note 8, Wilfond et al. 2010.

41. See note 8, Wilfond et al. 2010, at 36.

42. See note 20, Kittay 2011, at 619.

43. See note 8, Wilfond et al. 2010, at 34.

44. See note 19, Peace, Roy 2014, at 41.

45. See note 30, Single Dad 2012.

46. See note 24, McVeigh 2012.

47. See note 25, McVeigh 2012.

48. See note 24, McVeigh 2012.

49. See note 22, Pilkington 2012.

50. See note 23, Chisholm 2014, at 66.

51. See note 25, McVeigh 2012.

52. See note 30, Single Dad 2012.

53. See note 20, Kittay 2011, at 614.

54. See note 8, Wilfond et al. 2010, at 34.

55. See note 19, Peace, Roy 2014, at 42.

56. See note 30, Single Dad 2012.

57. See note 25, McVeigh 2012.

58. See note 24, McVeigh 2012.

59. See note 8, Wilfond et al. 2010, 36.

60. See note 8, Wilfond et al. 2010, 34.

61. See note 20, Kittay 2011, at 627.

62. See note 19, Peace, Roy 2014, at 47.

63. See note 30, Single Dad 2012.

64. See note 24, McVeigh 2012.

65. See note 24, McVeigh 2012.

66. See note 22, Pilkington 2012.

67. See note 30, Single Dad 2012.

68. See note 21, Kittay 2013.

69. See note 20, Kittay 2011, at 621.

70. See note 20, Kittay 2011, at 616.

71. See note 8, Wilfond et al. 2010.

72. See note 20, Kittay 2011, at 616.

73. See note 21, Kittay 2013.

74. See note 19, Peace, Roy 2014, at 44.

75. See note 25, McVeigh 2012.

76. See note 24, McVeigh 2012.

77. See note 22, Pilkington 2012.

78. See note 8, Wilfond et al. 2010, at 36.

79. See note 22, Pilkington 2012.

80. See note 6, Pollock et al. 2014.

81. See note 20, Kittay 2011.

82. Dworkin, R. Life’s Dominion: An Argument about Abortion, Euthanasia and Individual Freedom. New York: Random House; 1993.Google Scholar

83. Dresser, R. Dworkin on dementia: Elegant theory, questionable policy. In: Kuhse, H, Singer, P, eds. Bioethics: An Anthology. Oxford: Blackwell; 2006:365–73.Google Scholar

84. McLaughlin, J, Goodley, D. Seeking and rejecting certainty: Exposing the sophisticated lifeworlds of parents of disabled babies. Sociology 2008;42(2):317–35.CrossRefGoogle Scholar

85. Wilkinson D. Death or Disability. Oxford: Oxford University Press; 2013.