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 18 th 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/conse nt/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/