2025 – PAGE 448 – 449 – ETHICS IN PEDIATRICS

DO NOT RESUSCITATE (DNR; DNAR) ORDERS

• DNR orders only apply to CPR and do not imply that any other treatment should be omitted. That means a child could get treatment for a severe asthma exacerbation, or a cellulitis, but if she has an event that requires CPR then the CPR would not be performed.
• In the absence of a DNR order, universal consent to CPR is assumed.
• DNR orders should be written and not oral.
• Orders should be explicit about what kind of treatment is accepted or rejected (intubation, electrical defibrillation, chest compression, antiarrhythmics, etc.)
• DNR orders should be reviewed periodically, especially when circumstances or the patient’s condition changes.
• Even when there is NOT a DNR order in place, CPR is NOT ethically required if it is futile.

EUTHANASIA AND PHYSICIAN ASSISTED SUICIDE

• Neither euthanasia nor physician assisted suicide are legal in any state when applied to minors.

OTHER ISSUES

There are many specific issues where ethical principles are important. Many of these are controversial because they involve balancing ethical principles in some degree of tension. While there is broad agreement on principles such as autonomy and beneficence, there is room for disagreement when it comes to how to balance them when they conflict in specific circumstances. There is no single answer to memorize in such cases. If you see related questions on the exam you should use your reasoning, the basic principles taught here, and your knowledge of ongoing dialog about the issue.

Cochlear implant indications: Severe to profound bilateral sensorineural hearing loss should be confirmed, and when applicable, auditory brainstem responses to stimuli. A patient must have had a sufficient trial of hearing aids and demonstrated limited, or no, benefit. The patient should have no active ear disease, little to no risk for complications with anesthesia, and an intact tympanic membrane.

Genetic testing: The AAP takes the position that genetic testing should generally not be performed in children to identify diseases with adult onset and with no options for therapy in children. This is based mainly on the principle of autonomy: individuals should be allowed to make their own decisions, once they are adults, about the information they want to know about their health. Unless there is an imminent benefit to doing so, children should not have the decision made for them.

Newborns at limits of viability: When there is no reasonable likelihood of survival, resuscitation is not ethically required. When there is a good likelihood of survival without severe disability, resuscitation generally is required even if the parents disagree. In the grey zone, there are different perspectives. However, there is agreement that:

• Communication and transparency in decision-making are important.
• Parents’ values and perspectives must be considered.
• The more uncertain the prognosis, the more important the role of the parents is in decisions.

Organ and stem cell donation: The main issue in solid organ and stem cell donation by living children is that these are procedures which have no medical benefit for the donor child but involve risk and suffering. Since a young child cannot consent, it might be unethical to perform a procedure with no immediate benefit. The AAP seems to make a justification for transplantation with the use of minors as donors when the recipient is a close family member. In that case, the health of the recipient is said to be tied to with the welfare of the donor, so the procedure does have some potential benefit for the donor. AAP guidelines include these criteria for stem cell donation. The criteria for solid organ donation are basically the same.

• No adult relative willing and able to donate
• A strong, positive tie between donor and recipient
• Reasonable likelihood the donor will benefit
• The risks to the donor are minimized and are reasonable in view of the potential benefit
• Parental permission is given, as well as the donor’s assent (approval) if appropriate
• An independent donor advocate should be appointed

Growth hormone treatment for idiopathic short stature (ISS): This is highly controversial. Ethical considerations include:

• The cost is about $50,000 per inch of adult height. Is that a just and fair use of scarce health resources?
• Are the parents and patient well informed about the costs, the expected benefit, and have they been protected from commercial and undue social pressure?
• What is the benefit of being an inch or two taller? This is not well defined and there’s little to no evidence that the quality of life is increased.

There are consensus guidelines, and according to them, treatment should be considered if the height ranges from -2 standard deviations to -3 standard deviations for age. Adverse effects, cost of treatment, the physical and psychological impact of height gain, patient’s expectations, and ethical issues should all be considered.

If the decision is made to treat for ISS using growth hormone, the following should be kept in mind:

• Treatment should not start prior to 4 years of age.
• Therapy should continue until growth is complete (bone age > 16 years in boys and > 14 years in girls) or until the child’s height achieves the normal adult range (greater than -2 standard deviations).
• Any treatment should be done by or in consultation with a pediatric endocrinologist.