Ethical Issues in Pediatric Clinical Decision Making

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Ethical Issues in Pediatric Clinical Decision
Making

• John OReilly, MD

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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.
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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.

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Definitions

• 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.

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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.

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CATA Conditions for Withdrawal of LSMT

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

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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
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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
  apply.

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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.

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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

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For cases in which the clinical outcome is
ambiguous due to factual uncertainty, one must
treat until the prognosis is reliable.The
Presidents Commission
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In clearly ambiguous cases, parents should be
considered the Primae Facie authorities for
decision making. The Presidents Commission
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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.
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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.

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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

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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.
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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

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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.
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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

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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.
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Conflicting Stakeholders?

• Parents
• Primary Care Physician
• Pediatric Cardiologist
• Nurses
• Other Support Staff

• Other Family Members
• Institution (MCO)
• State / Society
• Religious Groups
• Special Interest Groups

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Medical Neglect

• ..is 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.
• ..is withholding medically indicated treatment
  from disabled infants with life threatening
  conditions.
• Source CT. State Neglect Statutes

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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
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Conflicting Stakeholders?

• Parents
• Primary Care Physician
• CF Attending
• Nurses
• Other Support Staff

• Other Family Members
• Institution (MCO)
• State / Society
• Religious Groups
• Special Interest Groups

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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.

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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
  justified.

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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
  treatment.

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AAP Principles of Treatment of Disabled Infants
(1984)

• 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.

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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
  existence.
• The AAP specifically rejects attempts to equate
  the quality of life with social worth as judged
  by others.

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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

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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
  infant.

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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.

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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

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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.

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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.

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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
  ability.
• Even if a child can not give Informed Consent,
  they should be asked to Assent.

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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
  settings.

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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
  present.
• consider alternative courses of action and
  compare them in terms of short and long term
  possibilities.

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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
  judgment.

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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.

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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

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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.

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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
  belief.
• 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).

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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.