FEU-NRMF

INSTITUTE OF MEDICINE Children’s Preferences

Bioethics 2 • Their choices should be respected
Polly T. Chua-Chan, MD, MPH, MHA • Even when children are not capable of giving informed consent,
their assent to interventions is still ethically important
ETHICAL ISSUES IN PEDIATRICS (developmentally appropriate).
• A child’s objections, however, are not necessarily decisive.
Introduction • Forced therapy becomes problematic if children are older, the
• Children effectiveness of the intervention is uncertain, or the side effects
- Immature are more probable, more serious, or longer lasting.
- Cannot make informed decisions about their care • The physician should listen to and respond to the child’s
- Must be protected from consequences of unwise decisions reasons for dissenting from treatment.
• If interventions are carried out despite the child’s objections, it
How are Ethical Issues in Pediatrics Different? is appropriate for the doctor to apologize to the child.
• Children are NOT autonomous
- Young children cannot weigh risks and benefits, compare Parents’ and Other Family Members’ Interests
alternatives, or appreciate the long term consequences of • Although the child’s best interests are of primary concern,
choices parents and other family members have interests that must
à Incapable of making informed decisions also be taken into account.
- Hence, autonomy is less important in pediatrics than in • What is best for an individual child can be understood only in
adult medicine the context of what is best for the family as a whole or for other
- Children’s objections to beneficial medical interventions family members.
do not have the same ethical force as adult’s informed
refusals Who Should Decide for Children?
- Parents are presumed to be the appropriate decision • The presumption of parental decision making
makers for their children - Parents are presumed to be the appropriate decision
- “Parents, however old they and we may grow to be, serve makers for their children
among other things to shield us from a sense of our doom. - Generally, love motivates them to do what is best for their
As long as they are around, we can avoid the fact of our children.
mortality; we can still be innocent children.” – Jane Howard - In addition, parents have long-term relationships with and
• Physicians should be advocates for children obligations to their children.
- Doctors have a unique opportunity to identify when a - In most cases, parents concur with physicians’
child’s health and well-being are jeopardized by their recommendations, for example:
parents’ decisions or actions. o Agreeing to antibiotics for strep throat
- Physicians have special responsibilities in these situations o Bronchodilators for asthma
to prevent suffering serious, long-lasting harm. o Surgery for appendicitis
• Respect children’s potential to become autonomous - Culture:
- Children’s potential to become autonomous adults o Parental responsibility
deserve respect o Family integrity
- Parental values deserve great deference (regard) o Strong parent-child relationships
- However, when children reach maturity they might choose - Parents and guardians have considerable latitude
different values from their parents’. (freedom), but not unlimited discretion, in raising children.
- Physicians need to help to ensure that parental decisions - Parental permission rather than consent
do not close off a child’s open future as a unique person - Although informed adults have a right to refuse any
- As children grow medical invention, parents do not have absolute power to
à more capable of making informed decisions refuse care for their children.
à involvement in care should increase • Emergencies
- Physicians provide opportunities to participate in - In an emergency, when a parent or guardian is not
decisions about their care (developmentally appropriate) available and a delay in treatment would jeopardize the
child’s life or health…
What Standards to Use in Deciding for Children? o The physician should act in the child’s best interests
• Principles of Beneficence and immediately provide appropriate treatment
- Imposes a duty upon doctor to act always for the good of without waiting for parental permission.
their patients • Exceptions to Parental Decision Making
- The very heart of morality - Parents estranged from their children or unwilling to be
involved in their care
Children’s Best Interests - Parents lack the capacity to make informed decisions, e.g.
• The concept of “best interests” emphasizes that children are o Substance abuse
persons separate from their parents, with their own interests o Developmental disability
and rights. - Informal arrangements are often made for another
• Generally, parents’ decisions and ongoing involvement in a relative to make decisions when parents are absent or
child’s care promote the child’s best interests. incapable of making decisions

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Adolescent Patients closely to treatment if they understand their diagnosis and the
• As children mature, they develop the capacity to make proposed therapy.
informed decisions about their health care. • Parental requests for secrecy are particularly difficult when
• 18-year olds adolescents are capable of making health care decisions
- Informed consent or • Generally, physicians can persuade parents to allow disclosure
- Refusal to medical care without parental involvement of information to the child, provide developmentally
• Younger minors (status or condition) appropriate information, and help the child cope.
- Status of the Minor • One study of children who died of cancer found that no parent
o Emancipated minors regretted talking with their child about death, but many
- Recognized as “de facto” adults because of parents who did not do so later regretted it.
marriage, service in the armed forces, or living • Physicians should give forthright answers when children ask
apart from parents and managing their own directly about their diagnosis.
finances • Deceiving the child would compromise the physician’s
- Many states in the U.S. require a judicial hearing integrity and patient’s trust in the medical system.
and declaration of emancipation by the courts
- Treatment of Specified Conditions Confidentiality
o Treatment without parental permission for sensitive ü Exceptions to Confidentiality
conditions, such as: • Must report cases of suspected child abuse or neglect to
- Sexually transmitted infections (STI’s) child protective services agencies.
- Contraception, pregnancy, sexual assault • Confidentiality is overridden to protect vulnerable children
- Substance abuse and psychiatric illness from a high likelihood of serious harm.
o These conditions might impair judgment or result • To be justified in reporting a case, physicians do not need
from unwise choices definitive proof of abuse and neglect, but only sufficient
o Justification information to warrant a fuller investigation.
- Requiring parental permission would deter
many adolescents from seeking treatment for ü Disclosure to Schools
important, treatable public health problems • Physicians might need to disclose health information to
o Even when adolescents consent to such care schools
themselves, it is generally in their best interests to • Disclose only information that is truly needed
involve their parents in their subsequent care. • For example: A school does not need to know the
diagnosis, but only that the child’s absence was medically
Scenario 1 indicated.
Parents might request that the physician test an adolescent for illicit
use or pregnancy without telling the child. ü Adolescents
• Commonly wish to keep certain information confidential
Parental Requests for Treatment from their parents – for instance:
• Although parents are naturally concerned, surreptitious o That they are receiving care for mental health
(secret) testing is unacceptable because it violates the o STDs
adolescent’s emerging autonomy, creates mistrust and o Pregnancy
suspicion in the family, and undermines the physician-child o Substance abuse
relationship. • Assurances of confidentiality increase the willingness of
adolescents to seek needed health care, particularly for
Physician-Child-Parent-Relationship such sensitive conditions, and to disclose information
• Disclosing information to children, protecting confidentiality, candidly to physicians.
and truth-telling show respect for children, lead to beneficial • Most adolescents believe that confidentiality should be
consequences, and foster trust in the medical profession. overridden when a patient plan to commit suicide or has
been physically or sexually abused.
Disclosure of Information to Children
• Thus, physicians should explain that confidentiality is not
• Physician should provide children pertinent information about absolute and that exceptions are made in specific
their care in terms they can understand situations.
• Children who cannot understand medical details might still • Doctors can offer help to adolescents disclose
want to know what will be done to them information to their parents
• Doctors should also obtain the child’s assent if this is • In some situations, disclosure might be counterproductive
developmentally appropriate. or dangerous, as when domestic violence is likely.

• In such situations, it would be desirable for the adolescent
Scenario 2
to confide in a trusted adult relative.
Some parents do not want their children to know about serious

diagnoses, such as cancer of HIV infection.



Disclosure of Information to Children

• Physicians should elicit the parents’ concerns and fears
• Parents might believe that the child will not be able to cope
better, have fewer psychosocial problems, and adhere more

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Refusal of Medical Interventions Adolescent’s Refusal of Interventions
1. Disagreements between parents and physicians • The physician’s response should depend on the:
2. Interventions of limited effectiveness or great burdens - Seriousness of the clinical situation
3. Effective interventions with few side effects - Effectiveness and side effects of treatment
4. Effective but burdensome therapy - Reasons for refusal
5. Adolescent’s refusal of interventions - Parents’ preferences on treatment
- Burdens of insisting on treatment
Scenario 3 • The most constructive approach is to try to understand the
Parents refuse care that physicians believe is in the child’s best reasons for refusal, to address them, and to provide
interests or provide suboptimal care for the child at home. psychosocial support.

Disagreements between Parents and Physicians Scenario 8 & 9
• Doctors need to try to persuade parents to accept effective - Stimulant medications improve distractibility, inattention, and
interventions that have fewer side effects impulsivity in children who do not meet the criteria for
• Physicians, together with social workers and nurses, can attention deficit / hyperactivity disorder (ADHD)
mobilize emotional support and social resources to help the - Parents request medications or use these stimulants to modify
parents provide better care. their child’s behavior or enhance their school performance

Interventions of Limited Effectiveness of Great Burdens Interventions with NO Medical Indications
• Physicians should respect parents’ informed refusals of • Critics contend that better alternative to such use of
interventions that have limited effectiveness, impose medications is instruction and practice to strengthen the will of
significant side effects, require chronic treatment, or are a restless and unruly child.
controversial. • Proper moral education requires shaping of character
• Such interventions are not clearly in the child’s best interest • These critics contend that unlike other parental steps to help
their children, such as tutoring, medications rupture the bond
Scenario 4 between effort and accomplishment and undermine the
Jehovah’s Witness refuses blood transfusions for their child with child’s responsibility, self-control, and sense of right and
Dengue Hemorrhagic Fever wrong.
• In rebuttal, other writers point out that these critics create a
Effective Interventions with Few Side Effects false dichotomy between medication and effort.
• Physicians who are unable to persuade parents to accept such • In fact, students using stimulant medications, like drinking
interventions should seek a court order to administer the coffee, still must study hard to learn.
treatment • It is also an oversimplification to suggest that poor school
• Overriding parents through the courts should be a last resort performance results primarily from lack of will and effort.
• Even if a child with asthma or diabetes is not receiving • In a child with significant behavioral and learning problems who
medications regularly, disrupting the parent-child bond causes does not meet criteria for ADHD, if behavioral and counseling
emotional distress for the child. approaches prove ineffective, it is reasonable for informed
• Foster placement or institutionalization might be worse for the parents to carry out a trial of medications.
child than care from well-meaning parents who are trying to
cope with difficult circumstances Handicapped Infants
• Premature infants with low birth weight can be treated
Scenario 5 effectively in neonatal intensive care units (NICUs) and
Parents refuse interventions for bone marrow transplantation in subsequently achieve normal growth and development.
Acute Lymphocytic Leukemia • At extremely low birth weight, however, such as below 400g,
very few infants survive even with intensive care, and survivors
Effective but Burdensome Therapy commonly have severe neurologic disabilities.
• If parents continue to refuse such therapy after repeated • Under these regulations, treatment other than “appropriate
attempts at persuasion, some physicians seek court orders to nutrition, hydration, or medication” need not be provided if:
compel treatment. a) The infant is irreversively comatose
• Physicians need to take into account the need for long-term b) Treatment would merely prolong dying
parental cooperation with the child’s care c) Treatment would not be effective in ameliorating or
• Physicians should listen to the parents’ objections and show correcting all life-threatening conditions
respect for their opinions and ongoing responsibility for the d) Treatment would be futile in terms of survival
child e) Treatment would be virtually futile and would be
• In situations where treatment is less successful, the physician’s inhumane
obligation to advocate for it is weaker. • Decisions to withhold medically indicated treatment may not
be based on “subjective opinions” about the child’s future
Scenario 6 & 7 quality of life.
- A teenager refuses to continue her inhaler for asthmatic attacks
- An adolescent with Type I DM refuses to continue her insulin
shots

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Summary
1) Parents are generally given great discretion to make decisions
for their children, on the assumption that they will act in the
child’s best interest. Generally, parents and physicians should
make shared decisions about the child’s care.

2) A parent may not forego interventions that are almost always
life-saving and have few serious adverse effects.

3) Parents may refuse interventions that have a very low
likelihood of success and great adverse effects.

4) As children gain maturity, they should play an increasing role in
decision making, as appropriate for their developmental stage.

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