Decision-Making in Pediatrics: When Child and Parent Disagree

1. Decision-Making in Pediatrics: When Child and Parent Disagree [Insert Name of Presenter] Ethics Resource Center American Medical Association

2. A “Triadic” Relationship • Pediatric relationships are usually triadic; composed of: • The child-patient, • The decision makers, usually the patient's parents, and • The physician. Ethics Resource Center American Medical Association

3. Role of Parents and Physicians in Decision Making • Parents, in conjunction with physicians, generally make treatment decisions by identifying their child's best interest. • Pediatricians have a duty to advocate what is best medically for their patients, while parents can evaluate what is best for their child socially and culturally. Ethics Resource Center American Medical Association

4. Pediatric Patient Participation in Treatment Decisions • Infants/Young Children: No significant decision-making capacity; not able to provide consent. • Primary School Children: Unable to understand fully the implications of treatment decisions. Treatment should be explained and assent sought. Ethics Resource Center American Medical Association

5. Pediatric Patient Participation in Treatment Decisions • Adolescents: Physicians must assess patient’s ability to weigh the potential risks and benefits of treatment options; some may be prepared to participate in decision making. Ethics Resource Center American Medical Association

6. Why Patient Participation? • Respects individuals’ right to make decisions about their own bodies. • Recognizes pediatric patient’s developing personhood and moral agency. • Confers a sense of control and owner-ship over the treatment decision.

7. Informed Consent: A Means for RespectingPatient Decision Making • Informed consent requires: • Patient competence to make health care decisions, • Physician disclosure of relevant information, • Patient understanding of the information, • Voluntary, uncoerced patient decision Ethics Resource Center American Medical Association

8. Adapting Informed Consent to Pediatrics • The concept of “informed assent” to treatment is a bridge between no patient participation (in small children) and full patient decision making (in competent adults).

9. Informed Assent in Pediatrics • Informed assent includes: • Helping the patient achieve a developmentally appropriate awareness of his/her condition, • Telling the patient what he or she can expect from tests and treatments, • Assessing the patient’s understanding of the situation, including whether he or she feels pressure to accept testing or treatment. Ethics Resource Center American Medical Association

10. Informed Assent in Pediatrics • Informed assent includes: • Soliciting the patient’s willingness to accept the proposed care. Patient’s views should not be solicited unless they will be weighed seriously. If the patient will have to receive medical care despite objection, he or she should be told so, and not deceived. Ethics Resource Center American Medical Association

11. Adolescent Decision Making: A Case Study • At 12 years of age Jamie was diagnosed with renal failure from reflux nephropathy. • Her condition was complicated by repeated abdominal infections while on peritoneal dialysis which required several hospitalizations. Ethics Resource Center American Medical Association

12. Treatment Decisions • Jamie's parents and her physician agreed that hemodialysis was a better treatment option. • Jamie, now 14, is told about her condition and the treatment that her parents and physicians have decided upon. • Her hemodialysis treatments were regularly complicated by vascular access difficulties. Ethics Resource Center American Medical Association

13. Two Years Later • At age 16, Jamie received a cadaveric kidney transplant. • Six months after the transplant, there was evidence of rejection despite good compliance with her cyclosporine medication. Ethics Resource Center American Medical Association

14. Stopping Hemodialysis • Jamie could not remember a time when she had been well and is frightened about having to return to hemodialysis given her history of complications. • Jamie tells her physician that she does not want hemodialysis. Ethics Resource Center American Medical Association

15. Clinical-Ethical Dilemma Should 16-year-old Jamie be allowed to make a treatment decision with such grave consequences? Ethics Resource Center American Medical Association

16. Emancipated Minors • The law allows “emancipated minors” to make health care decisions. • Emancipated minors include those who are: • Self-supporting or not living at home, • Married, • Pregnant or parents, • In the military. Ethics Resource Center American Medical Association

17. Mature Minors • Many states give decision-making authority to minors (called "mature minors") in cases that involve pregnancy, sexually transmitted diseases, or drug or alcohol abuse. Ethics Resource Center American Medical Association

18. Jamie’s Predicament • She disagrees with her parents’ treatment decision. • She is neither an “emancipated” nor a “mature minor.” • Her parents are neither neglectful nor abusive, which are reasons that limit parental authority in clinical decision making. Ethics Resource Center American Medical Association

19. Clinical Facts and Decisions • Jamie’s condition is chronic, not terminal. • Cyclosporine can cause depression and other serious side effects including confusion and nausea. • Discontinue cyclosprine. Ethics Resource Center American Medical Association

20. Respect for Jamie’s Autonomy • Accepting Jamie’s current decision forecloses any future exercise of autonomy—she dies. • Protecting her right to future autonomy may mean exercising limited paternalism in the present. Ethics Resource Center American Medical Association

21. Future Autonomy • The future right to exercise decision-making autonomy can be “violated in advance” by irrevocable decisions made while the patient is a child. • Parent decision makers must protect a child’s future rights until the child attains full decision-making capacity.

22. Preserving Jamie’s Future Autonomy • Educate Jamie as a prerequisite to gaining her “informed consent.” • Understand her viewpoint, and respond truthfully. • Negotiate with her about treatment options. • Attempt to persuade her of the benefits of continued treatment. Ethics Resource Center American Medical Association

23. Possible Outcomes • Persuasion succeeds and future treatment “succeeds.” • Persuasion succeeds but future treatment fails to improve Jamie’s quality of life. • Persuasion fails. Ethics Resource Center American Medical Association

24. If Persuasion or Treatment Fails • If Jamie wants to discontinue treatment, the physician must be confident that she is fully able to understand the consequences of her decision. • If so, the physician should respect Jamie’s right to consent to or refuse treatment. Ethics Resource Center American Medical Association

25. Conclusions • In the triadic pediatric relationship, parents are most often the decision makers for their children. • Involving children, as they mature, in decisions about their medical care is an important part of good pediatric practice. Ethics Resource Center American Medical Association

26. Conclusions • When adolescents’ preferences differ from those of their parents, the pediatrician must: • Be confident that the minor understands the condition and the consequences of the decision, • Attempt to negotiate for treatment in chronic cases, and • Respect the autonomy of the adolescent if persuasion or treatment fails. Ethics Resource Center American Medical Association

27. This ethics educational presentation was created by the: Ethics Resource CenterAmerican Medical Association515 North State StreetChicago, IL 60610Phone: (312) 464-4077Fax: (312) 464-4799Email: erc@ama-assn.org Web: www.ama-assn.org/go/erc