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Disclosure of a Diagnosis to Children and Adolescents When Parents Object

Disclosure of a Diagnosis to Children and Adolescents When Parents Object. Sigma, Kraut, and La Puma. DISCLOSURE. Conflict between duty to respect parents’ wishes and the duty to tell the truth to the child Parental authority cannot be absolute. The Case. Pt is 19 YOF. Cystic Fibrosis

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Disclosure of a Diagnosis to Children and Adolescents When Parents Object

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  1. Disclosure of a Diagnosis to Children and Adolescents When Parents Object Sigma, Kraut, and La Puma

  2. DISCLOSURE • Conflict between duty to respect parents’ wishes and the duty to tell the truth to the child • Parental authority cannot be absolute.

  3. The Case • Pt is 19 YOF. • Cystic Fibrosis • http://www.cff.org/ • Parents did not tell their child or the extended family.

  4. Disclosure • Physician tells her just after her 18th birthday. • Physician factors • Disease-specific factors • Patient factors • Family factors

  5. Physician Factors • Views are varied • Left to individual judgment • Issues of informed consent

  6. Disease-specific factors • Will child’s knowledge positively affect the diseases course and prognosis? • Must know facts of disease to plan their lives • Procreation

  7. Patient factors • Increasing maturity increases increasing duty to disclose • Duty to ask if more information is requested

  8. Family factors • Cultural rules • Family dysfunction • Psychiatric consultation

  9. The case revisited • The physician’s personal views were overridden by other factors. • It is not certain that the patient’s treatment was of poorer quality that it would have been had she known about her disease.

  10. The case revisited • The patient was not curious—but there was no evidence of psychopathology. • The patient was aware of and respected a parent-dominated social structure—dysfunctional?

  11. Canterbury v. Spence http://biotech.law.lsu.edu/cases/consent/canterbury_v_spence.htm

  12. Canterbury • “every human being of adult years and sound mind has a right to determine what shall be done with his own body…” • Scope of disclosure

  13. Canterbury • Full disclosure—unworkable • “Good medical practice”---not patient-based • Patient’s right to self-decision • Materiality

  14. Canterbury • Average, reasonable patient • “a risk is material when a reasonable person, in what the physician knows, or should know to be the patient’s position, would be likely to attach significance to the risk or cluster of risks in deciding whether or not to forego the proposed therapy.”

  15. Canterbury • The inherent and potential hazards of the proposed treatment • The alternatives to that treatment, if any • Results likely if the patient remains untreated

  16. Canterbury • http://www.ai.org/legislative/ic/code/title16/ar41/ch6.html#IC16-41-6-2 • http://www.in.gov/legislative/ic/code/title16/ar36/

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