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Ethical Decision-Making in Pediatrics


Ethical Decision-Making in ... assessments of risk, and neuroscience on brain development reveal ... interaction between a doctor and a patient has a moral ... – PowerPoint PPT presentation

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Title: Ethical Decision-Making in Pediatrics

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 Childrens 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 CareWhat are the important
Decision-Making Authority
  • In Care of Adults
  • In Care of Children
  • Presumption of decision making ability
  • Adults can chose who can speak for them
  • Surrogates are expected to use substituted
  • 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 childrenBeyond
  • Parental Permission
  • Better concept than proxy consent
  • Requires more attention to childs interests
  • Providers have increased role in decision making
  • Assent
  • Developmentally appropriate awareness of
  • 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
  • ? ?
  • 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
Childs Vulnerability
Parental Autonomy
Childs Well-Being and Interests
Societal Interests and Responsibilities
Childs Developing Autonomy
Importance of the Family for the Childs
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 hasnt received
    immunizations and they state, We dont believe
    in immunizations.

Ethical Issues in Case 1
  • Parental autonomy vs. Best Interests
  • Isnt the dilemma best interests vs. best
    interests instead of parental autonomy vs. best
  • 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 childs best-interest.
  • Except in unique cases (abuse, neglect, religious

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
    Jehovahs 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
  • 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
  • Full capacity Consent should be obtained from
    patient, and refusals binding (legal 18 years
  • Developing capacity If parents and patient
    disagree, every attempt should be made to
    persuade the patient rather than override the
    patients wishes.
  • Impaired or Undeveloped decision-making capacity
    Obtain parental consent and override refusal.
    without full capacity)
  • Essential treatment only parental
    permission/consent required childs assent
    recommended but dissent not binding (mature minor
  • Non-essential treatment dissent may be ethically

Refusals When should the refusals of minors be
  • 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 patients 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//
  • Faculty
  • 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