Against the tide: Arguments against respecting a minor's refusal of efficacious life-saving treatment

Cambridge Quarterly of Healthcare Ethics

Volumn 18, Issue 3, 2009, Pages 302-315

  Ross, Lainie Friedman ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ARTICLE; DECISION MAKING; ETHICS; HUMAN; INFORMED CONSENT; JUVENILE; LEGAL ASPECT; MORALITY; NEOPLASM; PARENTAL CONSENT; PERSONAL AUTONOMY; PSYCHOLOGICAL ASPECT; TREATMENT REFUSAL; UNITED STATES;

ADOLESCENT; DECISION MAKING; HUMANS; INFORMED CONSENT; MINORS; MORAL OBLIGATIONS; NEOPLASMS; PARENTAL CONSENT; PERSONAL AUTONOMY; THIRD-PARTY CONSENT; TREATMENT REFUSAL; UNITED STATES;

EID: 67649321863     PISSN: 09631801     EISSN: 14692147     Source Type: Journal    
DOI: 10.1017/S0963180109090471     Document Type: Article

References (50)

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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.
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6. See note 5, Best, Best 2006.
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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).
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14. See note 13, Markon 2006.
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18. Black C. Boy dies of leukemia after refusing treatment for religious reasons. Seattle PostIntelligencer 2007 Nov 29; available at http:// seattlepi.nwsource.com/local/341458-leukemia 29.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;
22. Ross LF. Children, Families and Health Care Decision Making. Oxford, UK: Oxford University Press; 1998:50-2;
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27. See note 22, American Academy of Pediatrics 1995;
28. see note 22, Weir, Peters 1997.
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32. 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).
33. 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.
34. See note 21, Ross 1998:62.
35. 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.
36. 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).
37. 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 Decision-making 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.
38. 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.
39. See note 21, Ross 1998:50-2.
40. See note 21, Ross 1998:66-9.
41. See note 21, Ross 1998:61-2.
42. 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.
43. Purdy LM. In Their Best Interest? The Case Against Equal Rights for Children. New York: Cornell University Press; 1992:76-84.
44. See note 21, Ross 1998:61.
45. See note 21, Ross 1998:62; see note 34, Gaylin 1982:31.
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