Mark R. Mercurio, M.D., M.A. Director Yale Pediatric Ethics Program

1. When the Parent is an Adolescent:Implications for decision-making in the clinical and research contexts Mark R. Mercurio, M.D., M.A. Director Yale Pediatric Ethics Program

2. The adolescent parent • U.S. has highest adolescent birth rate among industrialized countries • 90% of pregnancies are unintended • 83% from poor or low-income families

3. The adolescent parent • Incidence of LBW double • Incidence of preterm birth more than double • Neonatal death rate nearly triple AAP Pediatrics July 2005

4. Case presentation • A 14 year-old girl delivers an infant at 23 weeks gestation, who is critically ill in the Newborn Intensive Care Unit.

5. Case presentation • The mother lives with the maternal grandmother, with whom she has a close relationship. • The baby’s father is no longer involved.

6. Case presentation • The neonatologist goes to the mother’s room the day after delivery to discuss critical decisions regarding the infant’s care. • The mother (alone) seems distracted by the television and annoyed when it is turned off. She speaks minimally and avoids eye contact.

7. Ethics and medical decision-making • The two central questions of medical ethics: who and how? • Surrogate decision-makers for incompetent patients

8. Why parents as surrogate decision-makers? • Historical/cultural context • Legal precedent • Ethical justifications (later)

9. Question: • Who should serve as the surrogate decision-maker for a critically ill infant born to a 14 year-old mother? • Should a 14 year-old mother be accorded the same authority as an adult mother?

10. The legal question and the ethical question • Standard practice and the law in Connecticut with regard to adolescent parents • “The law doesn’t fit” • Legal advice

11. The moral authority of family members to act as surrogatesfor incompetent patients:Brock’s six grounds • Establishment by democratic process • The self-determination of the incompetent person • Someone must decide and a family member will usually do so best

12. Except for the incompetent patient, they will be most affected by the decisions • Justice requires consideration of the effects on others, like the family, of decisions about the incompetent patient • The family as an independent moral unit with decision-making responsibility for its members DW Brock The Milbank Quarterly 74(4) 1996

13. Ethical issues • Rights-based analysis • Parent’s right to decide for her child • Patient’s right to equal treatment

14. Equal treatment? • Would the adolescent mother be permitted to serve as surrogate decision-maker for her own mother if needed?

15. Question • Is an adolescent competent to make medical decisions?

16. Medical decision-makers Three capacities for competence: • Understanding and communication - includes conceptual and cognitive abilities

17. Medical decision-makers Three capacities for competence: 2. Reasoning and Deliberation • Values / conception of life goals Buchanan and Brock Deciding for Others 1995

18. Is a 14 year-old competent to make critical medical decisions for herself? - Understanding, communication, cognitive abilities, reasoning, deliberation: Developmental evidence suggests these are usually present by 14 or 15 at a level roughly comparable to adults D. Brock in Ladd (Ed) Children’s Rights Revisited 1996

19. Is a 14 year-old competent to make critical medical decisions for herself? • Continued development of frontal cortex from adolescence into adulthood – essential for response inhibition, emotional regulation, planning, and organization Sowell Nature Neuroscience Oct 1999 • MRI studies: Cortical grey matter changes through age 20 Giedd Nature Neuroscience Oct 1999

20. Values / conception of the good life • “The developing moral selfhood of the normal teenager renders the authenticity of his or her judgments more suspect than that of the normal adult. A teenager’s oppositional stance, while perhaps not defective in a purely cognitive sense, is probably not based on a well-established set of values that constitute a stable and recognizable moral self.” Bluestein and Moreno in The Adolescent Alone 1999

21. Competence: values and conception of the good life • Surely part of what goes into our abridgement of the child’s autonomy is the recognition that although he may be competent, the limitation of his experiences distorts his capacity for sound judgment. Gaylin W. in Gaylin and Macklin (eds) Who Speaks for the Child: The Problems of Proxy Consent 1982 Ross L. Hastings Center Report Nov-Dec 1997

23. Current standard • The current standard is that most 14 year-olds are generally not accorded the same autonomy as adults, and not permitted to function as surrogate decision-makers for adult family members.

24. Justice • If we believe they have the requisite skills then this is an injustice. If, however, we do not, then perhaps it is an injustice to allow them to serve as surrogate decision-makers for infants.

25. Medical treatment of minors without parental consent • Emergency • Exceptions based on specific conditions, e.g. mental health issues, STDs, pregnancy • “Mature Minor” • “Emancipated Minor” AAP Policy Statement Pediatrics March 2003

26. Mature minor • Generally 14 or older, sufficiently mature and possesses the intelligence to understand and appreciate the benefits, risks, and alternatives of the proposed treatment and able to make a voluntary and rational choice. • In determining whether the mature minor exception applies, the MD must consider the nature and degree of risk and whether the proposed treatment is for the minor’s benefit, is necessary or elective, and is complex.

27. Emancipated minor • Minor is self-reliant and independent e.g. married, military, living apart from parents. • In some states pregnant minors or minor mothers may also be included

28. Parents as surrogate decision-makers • Even if we accept that an adolescent mother should be permitted to decide for herself, does it follow that she should be permitted to serve as the surrogate decision-maker for her critically ill baby? • What is the ethical justification for choosing parents for that role?

29. Justifications for the parental right to decide 1. Parents know the child best 2. Parents, because of their affection and close ties, are most likely to do what is best for the child

30. Justifications for the parental right to decide 3. Parents, more than anyone else except the child, will have to live with the consequences of the decisions 4. Parents have a basic right to raise their children as they feel appropriate

31. Rights-based analysis

32. Child liberationist • Children should be accorded same rights as adults • What about the newborn child?

33. Beyond rights • Feminist ethics • Importance of web of relationships • Ethics of caring C Gilligan In a Different Voice 1982

34. Beyond rights • Family-centered care… make the family the focus of decision-making • May be consistent with a larger and more formal role for MGM

35. A different approach • Both ethical analyses are consistent with a different approach • Sharing duties and status of surrogate decision-maker between adol. mother and an adult family member is c/w justifications for parental right to decide • Maternal grandmother? Ladd and Mercurio Seminars in Perinatology December 2003

36. Basic principles regarding healthcare for adolescents • Blustein, Dubler, Levine in The Adolescent Alone 1999: • Health care providers have a moral obligation to respect each adolescent as a unique person and to support his or her developing autonomy

37. Basic principles regarding healthcare for adolescents • Health care providers have a moral obligation to treat adolescents fairly – avoid discrimination • Because of the need for beneficent guidance, healthcare providers should work with adolescents to identify a supportive and responsible adult who will assist them in decision-making

38. Basic principles regarding healthcare for adolescents • Healthcare providers have a moral obligation to promote the well-being of their patients and to minimize harm

39. Rights and obligations • This advice was rightfully meant to serve as a reminder of our obligations to adolescent patients • Newborn patients deserve no less

40. Rights and obligations • The adolescent’s need for “beneficent guidance” does not disappear the day she gives birth.

41. What it means to be an adult

42. No Longer a Child, Not Yet and Adult