Transcript 2009-pbc-mercurio - Seattle Children's

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
The adolescent parent
• U.S. has highest
adolescent birth rate
among industrialized
countries
• 90% of pregnancies are
unintended
• 83% from poor or lowincome families
The adolescent parent
• Incidence of LBW
double
• Incidence of preterm
birth more than double
• Neonatal death rate
nearly triple
AAP Pediatrics July 2005
Case presentation
• A 14 year-old girl
delivers an infant at
23 weeks gestation,
who is critically ill in
the Newborn
Intensive Care Unit.
Case presentation
• The mother lives with
the maternal
grandmother, with
whom she has a
close relationship.
• The baby’s father is
no longer involved.
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.
Ethics and medical
decision-making
• The two central
questions of medical
ethics:
who and how?
• Surrogate decisionmakers for
incompetent patients
Why parents as surrogate
decision-makers?
• Historical/cultural context
• Legal precedent
• Ethical justifications (later)
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?
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
The moral authority of family
members to act as surrogates
for incompetent patients:
Brock’s six grounds
1.
Establishment by democratic process
2.
The self-determination of the
incompetent person
3.
Someone must decide and a family
member will usually do so best
4.
Except for the incompetent patient, they
will be most affected by the decisions
5.
Justice requires consideration of the
effects on others, like the family, of
decisions about the incompetent patient
6.
The family as an independent moral unit
with decision-making responsibility for
its members
DW Brock The Milbank Quarterly 74(4) 1996
Ethical issues
• Rights-based analysis
• Parent’s right to decide
for her child
• Patient’s right to equal
treatment
Equal treatment?
• Would the adolescent
mother be permitted to
serve as surrogate
decision-maker for her
own mother if needed?
Question
• Is an adolescent
competent to
make medical
decisions?
Medical decision-makers
Three capacities for competence:
1. Understanding and communication
- includes conceptual and cognitive
abilities
Medical decision-makers
Three capacities for competence:
2. Reasoning and Deliberation
3. Values / conception of life goals
Buchanan and Brock Deciding for Others 1995
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
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
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
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
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.
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.
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
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.
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
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?
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
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
Rights-based analysis
Child liberationist
• Children should be
accorded same
rights as adults
• What about the
newborn child?
Beyond rights
• Feminist ethics
• Importance of web of
relationships
• Ethics of caring
C Gilligan
In a Different Voice 1982
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
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
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
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
Basic principles regarding
healthcare for adolescents
• Healthcare providers
have a moral
obligation to promote
the well-being of their
patients and to
minimize harm
Rights and obligations
• This advice was
rightfully meant to
serve as a reminder
of our obligations to
adolescent patients
• Newborn patients
deserve no less
Rights and obligations
• The adolescent’s
need for “beneficent
guidance” does not
disappear the day
she gives birth.
What it means to be
an adult
No Longer a Child,
Not Yet and Adult