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Against the Tide: Arguments against Respecting a Minor's Refusal of Efficacious Life-Saving Treatment

Published online by Cambridge University Press:  01 July 2009

LAINIE FRIEDMAN ROSS
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Type
The Great Debates
Information
Cambridge Quarterly of Healthcare Ethics , Volume 18 , Issue 3 , July 2009 , pp. 302 - 315
Copyright
Copyright © Cambridge University Press 2009

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References

1. Nealon P. Runaway teen-ager calls family in Norwell; Youth left home over cancer treatments. The Boston Globe 1994 Nov 6: Metro p. 34.

2. Weary of chemotherapy, teenager with cancer runs away. The New York Times 1994 Nov 6:A15.

3. See note 1, Nealon 1994.

4. Negri G. Parents beg ill Norwell youth to call home. The Boston Globe 1994 Nov 4: Metro p. 34.

5. Best B, Best S. Billy's story. Last revised August 27, 2006. Available at http://www.billybest.net/BillysStory.htm (last accessed 14 March 2009).

6. See note 5, Best, Best 2006.

7. Hart J. Cancer patient beating odds. The Boston Globe 1999 Mar 7:B2.

8. See note 7, Hart 1999; Kong D. Specialists express concern over youth's cancer treatments. The Boston Globe 1995 Apr 7:Metro p. 25.

9. See note 5, Best, Best 2006.

10. See note 5, Best, Best 2006.

11. See note 5, Best, Best 2006.

12. The Abraham Cherrix story; available at http://www.angelfire.com/az/sthurston/abraham_cherrix.html (last accessed 14 March 2009).

13. Markon J. Fight over a child's care ends in compromise; Va. judge's order could have forced teen to get chemotherapy. The Washington Post 2006 Aug 17:A01.

14. See note 13, Markon 2006.

15. Craig T. Kaine signs tax cut for poor, medical rights for sick teens. The Washington Post 2007 Mar 22:B02.

16. Markon J. Update: Teen who fought cancer regimen feeling 'amazing'. The Washington Post 2006 Oct 15:C02.

17. Associated Press. Chemotherapy case: Teen who fought treatment is in remission. The Washington Post 2007 Sep 15:B05.

18. Black C. Boy dies of leukemia after refusing treatment for religious reasons. Seattle Post-Intelligencer 2007 Nov 29; available at http://seattlepi.nwsource.com/local/341458_leukemia29.html (last accessed 14 March 2009).

19. See note 18, Black 2007.

20. For the purposes of this document, the term “minor” refers to any individual less than 18 years old. The term “child” also refers to any individual less than 18 years, although I prefer to use the term “minor” when referring to all individuals under the age of 18 because “child” also contrasts with “adolescent” and the dual meaning of the term ”child“ can be confusing. However I do use the term “child” to refer to all individuals under the age of 18 when discussing the child's role and relationship with his or her parents.

Some of the court decisions and Abraham's law use the age cutoff of 14 years to distinguish between children and adolescents, but mature minor statutes may include minors as young as 11 or 12 as “adolescents.”

21. Buchanan AE, Brock DW. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge MA: Cambridge University Press; 1989:233–5; Ross LF. Children, Families and Health Care Decision Making. Oxford, UK: Oxford University Press; 1998:50–2; Goldstein J, Freud A, Solnit A. Beyond the Best Interests of the Child (new edition with epilogue). New York: The Free Press; 1979:7.

22. American Academy of Pediatrics (AAP), Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995;95:314–7; Alderson P. Children's Consent to Surgery. Oxford, UK: Open University Press; 1993; Weir RF, Peters C. Affirming the decisions adolescents make about life and death. Hastings Center Report 1997;27(6):29–40.

23. See note 22, American Academy of Pediatrics 1995; see note 22, Weir, Peters 1997.

24. Slonina MI. State v. Physicians et al.: Legal standards guiding the mature minor doctrine and the bioethical judgment of pediatricians in life-sustaining medical treatment. Health Matrix 2007;17:181–214; Derish MT, Heuvel KV. Mature minors should have the right to refuse life-sustaining medical treatment. Journal of Law, Medicine & Ethics 2000;28:109–24; Sigman GS, O'Connor C. Exploration for physicians of the mature minor doctrine. Journal of Pediatrics 1991;119:520–5.

25. Basic needs refer to primary goods as described by John Rawls (Rawls J. A Theory of Justice. Cambridge, MA: Belknap Press of Harvard University Press; 1971:62). Health is a primary good and medical care is one way to fulfill the child's basic medical needs. Parents have a duty to provide a threshold of healthcare services to ensure that the child's basic medical needs are met. See note 21, Ross 1998:5-6.

26. See note 21, Ross 1998:62.

27. Engelhardt HT Jr. Freedom vs. best interest: A conflict at the roots of health care. In: Kliever LD, ed. Dax's Case: Essays in Medical Ethics and Human Meaning. Dallas, TX: Southern Methodist University Press; 1989:79.

28. Consider, for example, the case of In re E.G., which was decided by the Illinois Supreme Court in 1989. EG was a 17-year-old Jehovah's Witness with acute lymphocytic leukemia who went to court to be allowed to refuse blood transfusions. The Court concluded that EG had the right to refuse blood transfusions but that she required her parents’ concurrence (In re E.G., 549 N.E.2d (Ill. 1989) at 328).

29. Again, as defined in note 25, health is a primary good, and medical care is one way to fulfill this basic need. When a child has a life-threatening illness for which effective treatment exists, parents authorize medical care to promote their child's basic medical needs. Sometimes, however, as discussed in the section “Pediatric Decisionmaking for Life-Threatening Illnesses When Effective Therapy Does Not Exist,” below, treatment may not achieve cure and may cause more harm than good. In those cases, promoting the child's basic medical needs may mean refusing low-efficacy or experimental treatment and authorizing palliative care instead.

30. Rawls uses the term “lexical order” to refer to the requirement to satisfy the first principle before one can move to the second principle (note 25, Rawls 1971:42–3). Rawls explains that the correct term is “lexicographical order” but that this term is too cumbersome (note 25, Rawls 1971:43). Likewise, I hold that basic needs must be satisfied before one considers other needs and interests, and therefore refer to the lexical priority of basic needs over other needs and interests.

31. See note 21, Ross 1998:50–2.

32. See note 21, Ross 1998:66–9.

33. See note 21, Ross 1998:61–2.

34. Gaylin W. Competence: No longer all or none. In: Gaylin W, Macklin R, eds. Who Speaks for the Child: The Problems of Proxy Consent. New York: Plenum Press; 1982:35.

35. Purdy LM. In Their Best Interest? The Case Against Equal Rights for Children. New York: Cornell University Press; 1992:76-84.

36. See note 21, Ross 1998:61.

37. See note 21, Ross 1998:62; see note 34, Gaylin 1982:31.

38. Diekema DS. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theoretical Medicine & Bioethics 2004;25:243–64; Burt RA. Resolving disputes between clinicians and family about “futility” of treatment. Seminars in Perinatology 2003;27:495–502; Clark PA. Medical futility in pediatrics: Is it time for a public policy? Journal of Public Health Policy 2002;23:66–89; Antommaria AH, Bale JF Jr. Ethical issues in clinical practice: Cases and analyses. Seminars in Pediatric Neurology 2002;9:67–76.

39. Mercurio MR. An adolescent's refusal of medical treatment: Implications of the Abraham Cheerix case. Pediatrics 2007;120:1357–8.