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

When the Parent is an When the Parent is an Adolescent:Adolescent:

Implications for decision-making in Implications for decision-making in the clinical and research contextsthe clinical and research contexts

Mark R. Mercurio, M.D., M.A.Mark R. Mercurio, M.D., M.A.DirectorDirector

Yale Pediatric Ethics ProgramYale Pediatric Ethics Program

The adolescent parentThe adolescent parent

• U.S. has highest U.S. has highest adolescent birth rate adolescent birth rate among industrialized among industrialized countriescountries

• 90% of pregnancies are 90% of pregnancies are unintendedunintended

• 83% from poor or low-83% from poor or low-income familiesincome families

The adolescent parentThe adolescent parent

• Incidence of LBW Incidence of LBW double double

• Incidence of preterm Incidence of preterm birth more than doublebirth more than double

• Neonatal death rate Neonatal death rate nearly triplenearly triple

AAP Pediatrics July 2005AAP Pediatrics July 2005

Case presentationCase presentation

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


• The mother lives with The mother lives with the maternal the maternal grandmother, with grandmother, with whom she has a whom she has a close relationship. close relationship.

• The baby’s father is The baby’s father is no longer involved.no longer involved.


• The neonatologist goes to the mother’s The neonatologist goes to the mother’s room the day after delivery to discuss room the day after delivery to discuss critical decisions regarding the infant’s critical decisions regarding the infant’s care.care.

• The mother (alone) seems distracted by the The mother (alone) seems distracted by the

television and annoyed when it is turned television and annoyed when it is turned off. She speaks minimally and avoids eye off. She speaks minimally and avoids eye contact.contact.

Ethics and medical Ethics and medical decision-makingdecision-making

• The two central The two central questions of medical questions of medical ethics: ethics: who and how?who and how?

• Surrogate decision-Surrogate decision-makers for makers for incompetent patientsincompetent patients

Why parents as surrogate Why parents as surrogate decision-makers?decision-makers?

• Historical/cultural contextHistorical/cultural context

• Legal precedentLegal precedent

• Ethical justifications (later)Ethical justifications (later)

Question:Question:

• Who should serve as the surrogate Who should serve as the surrogate decision-maker for a critically ill infant decision-maker for a critically ill infant born to a 14 year-old mother?born to a 14 year-old mother?

• Should a 14 year-old mother be Should a 14 year-old mother be accorded the same authority as an accorded the same authority as an adult mother?adult mother?

The legal question and The legal question and the ethical questionthe ethical question

• Standard practice and Standard practice and the law in Connecticut the law in Connecticut with regard to with regard to adolescent parentsadolescent parents

• ““The law doesn’t fit”The law doesn’t fit”

• Legal adviceLegal advice

The moral authority of family The moral authority of family members to act as surrogatesmembers to act as surrogates

for incompetent patients:for incompetent patients:Brock’s six groundsBrock’s six grounds

1.1. Establishment by democratic processEstablishment by democratic process

2.2. The self-determination of the The self-determination of the incompetent personincompetent person

3.3. Someone must decide and a family Someone must decide and a family member will usually do so bestmember will usually do so best

4.4. Except for the incompetent patient, they Except for the incompetent patient, they will be most affected by the decisionswill be most affected by the decisions

5.5. Justice requires consideration of the Justice requires consideration of the effects on others, like the family, of effects on others, like the family, of decisions about the incompetent patientdecisions about the incompetent patient

6.6. The family as an independent moral unit The family as an independent moral unit with decision-making responsibility for with decision-making responsibility for its membersits members

DW Brock The Milbank Quarterly 74(4) 1996DW Brock The Milbank Quarterly 74(4) 1996

Ethical issuesEthical issues

• Rights-based analysisRights-based analysis

• Parent’s right to decide Parent’s right to decide for her childfor her child

• Patient’s right to equal Patient’s right to equal treatmenttreatment

Equal treatment?Equal treatment?

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

QuestionQuestion

• Is an adolescent Is an adolescent competent to competent to make medical make medical decisions?decisions?

Medical decision-makersMedical decision-makers

Three capacities for competence:Three capacities for competence:

1.1. Understanding and communicationUnderstanding and communication

- includes conceptual and cognitive - includes conceptual and cognitive abilitiesabilities

Medical decision-makersMedical decision-makers

Three capacities for competence:Three capacities for competence:

2. Reasoning and Deliberation2. Reasoning and Deliberation

3.3. Values / conception of life goalsValues / conception of life goals

Buchanan and Brock Buchanan and Brock Deciding for OthersDeciding for Others 1995 1995

Is a 14 year-old competent Is a 14 year-old competent to make critical medical to make critical medical

decisions for herself?decisions for herself?

- Understanding, communication, cognitive - Understanding, communication, cognitive abilities, reasoning, deliberation:abilities, reasoning, deliberation:

Developmental evidence suggests these are Developmental evidence suggests these are usually present by 14 or 15 at a level roughly usually present by 14 or 15 at a level roughly comparable to adults comparable to adults

D. Brock in Ladd (Ed) D. Brock in Ladd (Ed) Children’s Rights RevisitedChildren’s Rights Revisited

19961996

Is a 14 year-old competent Is a 14 year-old competent to make critical medical to make critical medical

decisions for herself?decisions for herself?

• Continued development of frontal cortex Continued development of frontal cortex from adolescence into adulthood – essential from adolescence into adulthood – essential for response inhibition, emotional regulation, for response inhibition, emotional regulation, planning, and organization planning, and organization

Sowell Nature Neuroscience Oct 1999Sowell Nature Neuroscience Oct 1999

• MRI studies: Cortical grey matter changes MRI studies: Cortical grey matter changes through age 20 through age 20

Giedd Nature Neuroscience Oct 1999Giedd Nature Neuroscience Oct 1999

Values / conception of Values / conception of the good lifethe good life

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

Bluestein and Moreno in Bluestein and Moreno in The Adolescent AloneThe Adolescent Alone 1999 1999

Competence: Competence: values and values and conception of the good lifeconception of the good life

• Surely part of what goes into our abridgement of Surely part of what goes into our abridgement of the child’s autonomy is the recognition that the child’s autonomy is the recognition that although he may be competent, the limitation of although he may be competent, the limitation of his experiences distorts his capacity for sound his experiences distorts his capacity for sound judgment.judgment.

Gaylin W. in Gaylin and Macklin (eds) Gaylin W. in Gaylin and Macklin (eds) Who Speaks for Who Speaks for the the Child: The Problems of Proxy ConsentChild: The Problems of Proxy Consent 1982 1982

Ross L. Hastings Center Report Nov-Dec 1997Ross L. Hastings Center Report Nov-Dec 1997

Current standardCurrent standard

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

JusticeJustice

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

Medical treatment of minors Medical treatment of minors without parental consentwithout parental consent

• EmergencyEmergency

• Exceptions based on specific conditions, Exceptions based on specific conditions, e.g. mental health issues, STDs, pregnancye.g. mental health issues, STDs, pregnancy

• ““Mature Minor”Mature Minor”

• ““Emancipated Minor”Emancipated Minor”AAP Policy Statement Pediatrics March 2003AAP Policy Statement Pediatrics March 2003

Mature minorMature minor

• Generally 14 or older, sufficiently mature and Generally 14 or older, sufficiently mature and possesses the intelligence to understand and possesses the intelligence to understand and appreciate the benefits, risks, and alternatives of appreciate the benefits, risks, and alternatives of the proposed treatment and able to make a the proposed treatment and able to make a voluntary and rational choice.voluntary and rational choice.

• In determining whether the mature minor In determining whether the mature minor exception applies, the MD must consider the exception applies, the MD must consider the nature and degree of risk and whether the nature and degree of risk and whether the proposed treatment is for the minor’s benefit, is proposed treatment is for the minor’s benefit, is necessary or elective, and is complex.necessary or elective, and is complex.

Emancipated minorEmancipated minor

• Minor is self-reliant and Minor is self-reliant and independent e.g. independent e.g. married, military, living married, military, living apart from parents.apart from parents.

• In some states pregnant In some states pregnant minors or minor minors or minor mothers may also be mothers may also be includedincluded

Parents as surrogate Parents as surrogate decision-makersdecision-makers

• Even if we accept that an adolescent Even if we accept that an adolescent mother should be permitted to decide for mother should be permitted to decide for herself, does it follow that she should be herself, does it follow that she should be permitted to serve as the surrogate permitted to serve as the surrogate decision-maker for her critically ill baby?decision-maker for her critically ill baby?

• What is the ethical justification for What is the ethical justification for choosing parents for that role?choosing parents for that role?

Justifications for the Justifications for the parental right to decideparental right to decide

1. Parents know the child best1. Parents know the child best

2. Parents, because of their affection and 2. Parents, because of their affection and close ties, are most likely to do what is close ties, are most likely to do what is best for the childbest for the child

Justifications for the Justifications for the parental right to decideparental right to decide

3. Parents, more than anyone else except the 3. Parents, more than anyone else except the child, will have to live with the consequences child, will have to live with the consequences of the decisionsof the decisions

4. Parents have a basic right to raise their 4. Parents have a basic right to raise their children as they feel appropriatechildren as they feel appropriate

Rights-based analysisRights-based analysis

Child liberationistChild liberationist

• Children should be Children should be accorded same accorded same rights as adultsrights as adults

• What about the What about the newborn child?newborn child?

Beyond rightsBeyond rights

• Feminist ethicsFeminist ethics

• Importance of web of Importance of web of relationshipsrelationships

• Ethics of caringEthics of caring

C Gilligan C Gilligan In a Different VoiceIn a Different Voice

19821982

Beyond rightsBeyond rights

• Family-centered Family-centered care… make the care… make the family the focus of family the focus of decision-makingdecision-making

• May be consistent May be consistent with a larger and with a larger and more formal role for more formal role for MGMMGM

A different approachA different approach

• Both ethical analyses are consistent with a Both ethical analyses are consistent with a different approachdifferent approach

• Sharing duties and status of surrogate Sharing duties and status of surrogate decision-maker between adol. mother and an decision-maker between adol. mother and an adult family member is c/w justifications for adult family member is c/w justifications for parental right to decideparental right to decide

• Maternal grandmother?Maternal grandmother?

Ladd and Mercurio Seminars in PerinatologyLadd and Mercurio Seminars in PerinatologyDecember 2003December 2003

Basic principles regarding Basic principles regarding healthcare for adolescentshealthcare for adolescents

• Blustein, Dubler, Levine in Blustein, Dubler, Levine in The Adolescent The Adolescent AloneAlone 1999: 1999:

• Health care providers have a moral obligation Health care providers have a moral obligation to respect each adolescent as a unique to respect each adolescent as a unique person and to support his or her developing person and to support his or her developing autonomyautonomy


• Health care providers have a moral obligation Health care providers have a moral obligation to treat adolescents fairly – avoid to treat adolescents fairly – avoid discriminationdiscrimination

• Because of the need for beneficent guidance, Because of the need for beneficent guidance, healthcare providers should work with healthcare providers should work with adolescents to identify a supportive and adolescents to identify a supportive and responsible adult who will assist them in responsible adult who will assist them in decision-makingdecision-making


• Healthcare providers Healthcare providers have a moral have a moral obligation to promote obligation to promote the well-being of their the well-being of their patients and to patients and to minimize harmminimize harm

Rights and obligationsRights and obligations

• This advice was This advice was rightfully meant to rightfully meant to serve as a reminder serve as a reminder of our obligations to of our obligations to adolescent patientsadolescent patients

• Newborn patients Newborn patients deserve no lessdeserve no less

Rights and obligationsRights and obligations

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

What it means to be What it means to be an adultan adult

No Longer a Child, No Longer a Child, Not Yet and AdultNot Yet and Adult

Documents

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