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Ethical Issues in Pediatric Clinical Decision Making


Case One: A full term Trisomy 21 infant is diagnosed with Duodenal Atresia. ... attendings tell the parents that the atresia can be completely corrected with a ... – PowerPoint PPT presentation

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Title: Ethical Issues in Pediatric Clinical Decision Making

Ethical Issues in Pediatric Clinical Decision
  • John OReilly, MD

Case One A full term Trisomy 21 infant is
diagnosed with Duodenal Atresia. The NICU and
Surgical attendings tell the parents that the
atresia can be completely corrected with a simple
surgical procedure which has a lt1 mortality. The
parents consult their OB physician, who
recommends no surgery because of the Downs
Syndrome. The parents refuse surgery, knowing
that the infant will starve to death.
Forgoing LSMTPediatric Decision Making
  • It is the legal and ethical norm that parents are
    considered the appropriate decision makers for
    their children.
  • Under certain circumstances (e.g., an abuse case
    ), parents may not be considered to be the
    appropriate decision maker.
  • The opinions of older children and adolescents
    should be considered strongly, regardless of
    their legal status as minors.

  • Forgoing refers to both stopping a treatment
    already begun as well as not starting a therapy.
  • Life Sustaining Medical Therapy (LSMT)
    encompasses all interventions that may prolong
    the life of a patient. This includes antibiotics,
    insulin and fluid and nutrition whether supplied
    by an IV or by a feeding tube.

When Is Withdrawal of LSMTLegally Permissible ?
  • The Child Abuse and Treatment Act (CATA) was
    passed by Congress after the courts overturned
    the Baby Doe Laws. The Act stipulates three
    conditions under which withdrawal of LSMT is
    legally acceptable.
  • These legal conditions are consistent with the
    Ethical conclusions of The Presidents Commission
    on Deciding to Forego Life Sustaining Treatment.

CATA Conditions for Withdrawal of LSMT
  • The infant is chronically and irreversibly
  • Provision of such treatment would merely prolong
    dying or not be effective in ameliorating or
    correcting the infants life- threatening
  • Provision of such treatment would be futile and
    the treatment would be inhumane.
  • Does our patient fit these criteria? Why or
    why not?

Only the childs welfare should be considered
when making decisions around forgoing LSMT. The
burdens that will be placed on family or society
should not be considered. The Child Abuse
Prevention and Treatment Act Amendment of 1984
Forgoing LSMTPediatric Decision Making
  • Standards for Surrogate Decision Making
  • Pure Autonomy
  • Substituted Judgment
  • Best Interests
  • In MA, the legal concept of Substituted
    Judgment put forth in Saikewicz will apply. In
    other states, the Best Interest Standard should

Best Interest Standard
  • The Best Interest Standard is said to be more
    objective than Substituted Judgment, but it also
    involves important value judgments.
  • Using this standard, the surrogate should
    objectively evaluate the benefits and burdens of
    the treatment options, and choose the with the
    greatest benefit to burden ratio.

When using the Best Interests Standard, one
must consider
  • The amount of suffering, and the potential for
    relief of the suffering.
  • The severity of the impairment, and the
    likelihood of restoration to function.
  • The life expectancy.
  • The potential for personal satisfaction and
    enjoyment of life.
  • The capacity for self- determination.
  • The Presidents Commission

For cases in which the clinical outcome is
ambiguous due to factual uncertainty, one must
treat until the prognosis is reliable.The
Presidents Commission
In clearly ambiguous cases, parents should be
considered the Primae Facie authorities for
decision making. The Presidents Commission
In cases where the Relationship Standard rather
than the Best Interest Standard would apply,
the patient might be considered to have no
interest, and hence other factors such as family
or society concerns may have standing.
Introduction to Medical Ethics
  • Medical decisions involve what one medically
    could do in a given situation.
  • Ethical decisions involve what one ethically
    ought to do in a given situation.
  • Clinical Medical Ethics decisions involve what
    one ought to do in a given medical situation.

Conflicting Stakeholders?
  • Parents
  • OB Physician
  • NICU Physician
  • Pediatric Surgeon
  • Pediatric Primary Care Provider
  • Nurses
  • Other Support Staff
  • Other Family Members
  • Institution (MCO)
  • State / Society
  • Religious Groups
  • Special Interest Groups

Case Two SJ is a full term infant with Trisomy
18 and multiple anomalies, including a total AV
canal. She is weak, and requires NG feedings. She
remains in CHF despite aggressive medical
therapy. She is chronically tachypneic and
diaphoretic. The parents are informed that only
10 of Trisomy 18 infants survive beyond 1 year,
and those that do survive are usually profoundly
retarded. Cardiac repair would only be palliative
and not curative, and carries a mortality risk of
20-30. The surgeons recommend against operating,
but the parents insist.
Conflicting Stakeholders?
  • Parents
  • OB Physician
  • NICU Physician
  • Cardiac Surgeon
  • Primary Care Provider
  • Nurses
  • Other Support Staff
  • Other Family Members
  • Institution (MCO)
  • State / Society
  • Religious Groups
  • Special Interest Groups

Case Three JP is a 34 week twin A. JP had
difficulties at delivery, requiring ventilation
and aggressive volume replacement. Although twin
B is ready for discharge one month later, JP has
suffered a unilateral grade 4 bleed and still
does not suck well. He requires 1/2 of his feeds
by NG but is stable in the CCN. The parents tell
you at rounds that their priest has told them
they do not need to use extraordinary means to
keep their child alive, and they request NG feeds
be stopped. They know that their infant could
starve to death.
Conflicting Stakeholders?
  • Parents
  • OB Physician
  • NICU Physician
  • Pediatric Primary Care Provider
  • Nurses
  • Other Support Staff
  • Other Family Members
  • Institution (MCO)
  • State / Society
  • Religious Groups
  • Special Interest Groups

Case 4 JS is a 16 month infant recently
transferred to your practice. He is cachectic,
pale, and has a harsh blowing murmur. When you
tell them JS needs an urgent Cardiology
evaluation, they refuse stating that everyone in
our family is small and have murmurs. You agree
to observe while you await old records. Six weeks
later the child has not gained, the records have
not arrived, and the parents have not budged from
their refusal to see the Cardiologist.
Conflicting Stakeholders?
  • Parents
  • Primary Care Physician
  • Pediatric Cardiologist
  • Nurses
  • Other Support Staff
  • Other Family Members
  • Institution (MCO)
  • State / Society
  • Religious Groups
  • Special Interest Groups

Medical Neglect
  • the refusal or failure on the part of the
    person responsible for the childs care to seek,
    obtain, and/or maintain those services for
    necessary medical, dental or mental health care.
  • withholding medically indicated treatment
    from disabled infants with life threatening
  • Source CT. State Neglect Statutes

Case 5 TD is a 17 1/2 year old CF patient who
has struggled for years with severe disease. He
has had multiple PICU admissions and intubations
for exacerbations. He has been on the transplant
list for a number of years. Recently he has been
having increasing fever and dyspnea despite
aggressive parenteral antibiotics. When
intubation is discussed he says Its my time. Id
rather die than be intubated again. The next day
becomes more hypoxic and obtunded. His parents
demand that he be intubated now that he is sick
enough to go to the top of the transplant list
Conflicting Stakeholders?
  • Parents
  • Primary Care Physician
  • CF Attending
  • Nurses
  • Other Support Staff
  • Other Family Members
  • Institution (MCO)
  • State / Society
  • Religious Groups
  • Special Interest Groups

AAP Bioethics StatementTreatment of Critically
Ill Newborns(1983)
  • The most basic of these (ethical) principles is
    that the Pediatricians primary obligation is to
    the child. While the needs and interests of
    parents, as well as of the larger society, are
    proper concerns of the Pediatrician, his primary
    moral and legal obligation is to the
    child-patientTreatment should not be withheld
    for the primary purpose of improving the
    psychological or social well being of others.

AAP Bioethics StatementTreatment of Critically
Ill Newborns(1983)
  • The traditional method of a single physician
    making such (LSMT) judgments without exposure to
    other persons having additional facts,
    experience, and points of view, may lead to
    decisions that, in retrospect, cannot be

Presidents Commission (1983)Deciding to Forego
Life-sustaining Treatment
  • ..Handicaps justify a decision not to provide
    life-sustaining treatment only when they are so
    severe that continued existence would not be of
    net benefit to the infant..
  • ..the concept of benefit" excludes honoring
    idiosyncratic views that might be allowed if a
    person were deciding about his or her own

AAP Principles of Treatment of Disabled Infants
  • Consideration such as actual or anticipated
    limited potential of an individual and present or
    future lack of community resources are irrelevant
    and must not determine the decisions concerning
    medical care.
  • In cases where it is uncertain whether medical
    treatment will be beneficial, a persons
    disability must not be the basis for a decision
    to withhold treatment.

AAP Guidelines on Foregoing Life-Sustaining
Medical Treatment (1994)
  • The phrase quality of life refers to the
    experience of life as viewed by the patient,
    i.e., how the patient and not parents or health
    care providers perceives or evaluates his or her
  • The AAP specifically rejects attempts to equate
    the quality of life with social worth as judged
    by others.

AAP Guidelines on Foregoing Life-Sustaining
Medical Treatment (1994)
  • Our social system grants patients and families
    wide discretion in making their own decisions
    about health care and in continuing, limiting,
    declining, or discontinuing treatment whether
    life sustaining or otherwise. Medical personnel
    should seek to override family wishes only when
    those views clearly conflict with the interests
    of the child

AAP The Initiation or Withdrawal of Treatment
for High Risk Newborns (1995)
  • The rights of parents in decision making must be
    respected. However, physicians must not be forced
    to under treat or over treat an infant if, in
    their best medical judgment, the treatment is not
    in compliance with the standard of care for that

AAP Informed Consent, Parental Permission, and
Assent in Pediatric Practice (1995)
  • Thus proxy consent poses serious problems for
    the pediatric health care provider. Such
    providers have ethical and legal duties to their
    child patients to render competent medical care
    based on what the patient needs, not on what
    someone else expressesThe pediatricians
    responsibility to his or her patient exist
    independent of parental desires or proxy consent.

Applicable Ethical TheoryInformed Consent
  • There are five elements of the informed consent
    process, and all elements must be present to
    achieve truly informed consent. These elements
    are Decision Making Capacity, Disclosure,
    Understanding, Voluntariness, and Consent.
  • One must ensure that the adolescent has the
    decision making capacity required to give
    informed consent

Adolescent Capacity to Make Health Care Decisions
  • In order to say that an adolescent has the
    capacity to make health care decisions, you must
    demonstrate that he/she can fulfill the criteria
    for capacity, namely that he/she can understand
    and communicate information with health care
    providers, deliberate using a personal value
    system, weigh options and reach a voluntary
    decision without undue coercion.

Adolescent Capacity to Make Health Care Decisions
  • On an ethical level, an Adolescents
    decision making capacity will be determined
    clinically on an individual basis.
  • On a legal level, adolescents can be grouped into
    different categories with distinct legal
    characteristics. Three broad categories to
    consider include incompetent minors, mature
    minors, and emancipated minors.

Incompetent Minors
  • Ethically, a minor that is not legally competent
    should still participate in decisions about his /
    her care.
  • Acquiring the ability to make informed decisions
    is a developmental process. Pediatricians should
    include older children into treatment decisions
    and help to maximize their decision making
  • Even if a child can not give Informed Consent,
    they should be asked to Assent.

Applicable Ethical TheoryMature Minors
  • Legally, mature minors are not emancipated, but
    have recognized decision making capacity under
    certain conditions
  • They are seeking treatment for sexually
    transmitted disease, pregnancy, or drug or
    alcohol abuse.
  • The details of these situations vary by state,
    and specific statutes should be reviewed.
  • Ethically, this term is applied to broader
    groups of minors in a wider variety of clinical

Bluestein defines the broader sense of Adolescent
maturity in terms of possessing the cognitive and
reasoning skills that allow an adolescent to..
  • consider possibilities that are not immediately
  • consider alternative courses of action and
    compare them in terms of short and long term

A mature Adolescent can
  • plan ahead to achieve successful outcomes.
  • to engage in second order thinking about ones
    thoughts and inner states.
  • utilize knowledge in a manner attuned to the
    particular situation he/she is in, and to
    regulate conduct in accordance with deliberative

Adolescent Maturity
  • Adolescent maturity is a threshold concept, that
    can best be viewed as a sliding scale strategy.
  • Under such a strategy, the more severe the
    consequences of a decision, the more proof that
    is required of an adolescents maturity.

Applicable Ethical Theory Emancipated Minors
  • Characteristics of Emancipated Minors
  • Self supporting and not living at home.
  • Married
  • Pregnant or already a parent
  • In the Military
  • Declared Emancipated by a court

The Adolescent Autonomy Argument
  • Adolescents can be considered to have the
    capacity to refuse LSMT if
  • He/she has experienced the illness for some time
    and understands the benefits/ burdens of the
    illness and its treatment.
  • He/she the ability to reason and weigh options.
  • He/she has an understanding of death that
    recognizes its personal significance and finality.

The Adolescent Autonomy Argument
  • To respect a patients autonomy requires that you
    allow that individual to hold his / her own
    beliefs , and to act in accordance with those
  • Respect for autonomy includes both a negative
    obligation (others should not interfere with an
    autonomous persons actions), as well as a
    positive obligation (others should act to
    enhance autonomy).

The Adolescent Autonomy Argument
  • Therefore, this argument would state that when an
    Adolescent has reached the level of having
    autonomous decision making capacity, the respect
    for the Adolescents Autonomy would obligate the
    physician from imposing any unwanted therapy.
    This would include therapy that the Adolescents
    family or physician feel is in the best interest
    of the Adolescent.