Ethical Decision-Making in
Pediatrics
Holly K. Tabor, Ph.D.
Assistant Professor
Department of Pediatrics
University of Washington
Treuman Katz Center for
Pediatric Bioethics
Seattle Children’s Hospital
“Every interaction between a
doctor and a patient has a moral
component.”
-Carrese and Sugarman, “The
Inescapable Relevance of Bioethics for
the Practicing Clinician” (2006)
Pediatrics vs. Adult Care:
What are the important
differences?
Decision-Making Authority
In Care of Adults:
• Presumption of
decision making ability
• Adults can chose who
can speak for them
(surrogates)
• Surrogates are
expected to use
“substituted judgment”
In Care of Children:
•Presumption of lack of
decision making
capacity – have to
demonstrate
developmental ability
•Parents are presumed
to speak for children
•Parents are expected
to use “best interests”
Choosing & Refusing Treatment
In Care of Adults:
In Care of Children:
•Adults (and surrogates)
can accept or reject life
saving treatments
•Threshold for state
mandated intervention
is high
• Parents have less
discretion in refusing
life saving treatments
• Threshold for state
intervention, based on
neglect, is lower
Medical decision-making for children:
Beyond consent
• Parental Permission
– Better concept than “proxy consent”
– Requires more attention to child’s interests
– Providers have increased role in decision making
• Assent
– Developmentally appropriate awareness of condition
– Disclosing expectations for tests and treatments
– Assessing understanding and voluntariness
– Soliciting preference when they will be followed
AAP Committee on Bioethics. Pediatrics 1995
How ethical tensions arise:
• The child patient has a voice that needs to be
respected in a developmentally appropriate
fashion.
 
• Parents or legal guardians have decision-making
rights, because they are often the best person to
judge and protect the interests of a child.
 
• Children are vulnerable and clinicians have special
responsibilities to protect the interests of child
patients.
The Balancing Act of Pediatric
Bioethics
Child’s
Vulnerability
Parental
Autonomy
Child’s Well-Being
and Interests
Child’s
Developing
Autonomy
Societal Interests
and Responsibilities
Importance of the
Family for the
Child’s Development
Case 1: Parental Decision-making
You are a primary care physician who is
assuming the care of a family. Upon review of
the past medical history of the 1 year old
daughter, you find that she has no immunizations
although she received several well child
examinations with their chiropractic caregiver.
Her current medications include Chinese herbal
supplements and the family follows a vegan diet.
You ask the parents why your patient hasn’t
received immunizations and they state, “We
don’t believe in immunizations.”
Ethical Issues in Case 1
Parental autonomy vs. Best Interests
Isn’t the dilemma best interests vs. best interests instead of
parental autonomy vs. best interests?
What does “best interests” really mean?
• What a “reasonable person” would choose
• Expecting parents to promote the welfare (relief of
suffering, preservation or restoration of function, quality of
life) of their child
• Providers may need to tolerate decisions they disagree
with if not harmful to the child
Understanding the Parents’ Perspective
 What are their fears or concerns?
 What are the potential cultural beliefs informing their
views?
Ethical Issues in Case 1
• Parental autonomy vs. public health
– Three ways unimmunized can cause harm:
• If become ill, increase risk to other unimmunized kids who rely
on herd immunity (children with underlying medical
conditions)
• Also increase risk to immunized kids (small % remain
susceptible)
• Immunized individuals share burden of cost of treating illness
in unimmunized kids
The Problem of Free-riders
• Parents take advantage of herd immunity
• Place family interests above civic
responsibility
• Is this fair?
Ethical Issues in Case 1
• Law respects parents’ ability to be best
judge of what is in their child’s bestinterest.
– Except in unique cases (abuse, neglect,
religious sacrifices).
Limits on Parental Autonomy
• Physical Abuse
• Neglect
• Life-threatening
Illness/Emergency
----Bright Line-------Grey Zone---• Impact on development
or disability
• Restrictive or
controversial practices
Case 2: Adolescent Decision-Making
A 14 year-old boy is admitted to the Hematology-Oncology
ward with acute lymphoblastic leukemia. He presented to
the Emergency Department with pallor and dizziness and
was found to have a hematocrit of 14.9%. The oncologist
would like to start best available chemotherapy
immediately, but the patient and his legal guardians (aunt
and uncle) have made it clear both verbally and in writing
that, as Jehovah’s Witnesses, they will refuse all blood
products. His chemotherapy is myeloablative and will
cause a further decline in his hematocrit. There is virtually
a 100% chance of death with this leukemia if it is not
treated and an approximately 75% chance of survival with
best available chemotherapy.
Adolescents and Pediatric
Bioethics
• Adolescents often capable of meaningful
participation in health-care decisions
– Shifting from assent + parental permission
to consent.
• Movement in pediatric practice and research in
the U.S., UK, and Europe to include older
children and adolescents as active participants
in medical decision-making
– (And many states have mature minor
clauses)
Summary of Empirical Data on
Pediatric Capacity
• While minors below ages of 11-13 do not
generally possess the cognitive
capacities of adults, minors ≥ 15 are not
any less competent to consent than most
adults. (Grisso, Vierling, 1978; Weithorn, Campell,
1982)
• Chronological age does not always track
cognitive development, but by age 14
most minors demonstrate capacities
required by rational consent. (Leiken, 1983)
• Recent studies on affect, assessments of
risk, and neuroscience on brain
development reveal limitations related to
emotion and life experience. (Johnson et al,
2009)
Two Useful Distinctions
CAPACITY
• Full capacity: Consent should
be obtained from patient, and
refusals binding (legal: ≥18
years old).
• Developing capacity: If parents
and patient disagree, every
attempt should be made to
persuade the patient rather
than override the patient’s
wishes.
• Impaired or Undeveloped
decision-making capacity:
Obtain parental consent and
override refusal.
ESSENTIAL v. NONESSENTIAL
TREATMENT (in minors
without full capacity)
• Essential treatment: only
parental permission/consent
required; child’s assent
recommended but dissent not
binding (mature minor
exceptions).
• Non-essential treatment:
dissent may be ethically
binding.
Refusals: When should the
refusals of minors be binding?
Refusals
• Full capacity: Consent should be obtained,
and refusals binding.
• Developing capacity: If the intervention is
therapeutic but not life-saving, every attempt
should be made to persuade the patient,
rather than overriding the patient’s wishes.
Refusals may still bind in some cases.
• Impaired or Undeveloped decision-making
capacity: Obtain parental consent and
override refusal.
Local Resources for Pediatric
Bioethics
• Treuman Katz Center for Pediatric Bioethics
http://bioethics.seattlechildrens.org
• Faculty:
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Ben Wilfond, MD
Doug Diekema, MD, MPH
Maureen Kelley, PhD
David Woodrum, MD
Holly Tabor, PhD
Doug Opel, MD
• Activities:
– Grand Rounds, Case Conferences, Weekly Bioethics Seminar, Annual
Conferences
Thanks!