Reports advise on obtaining informed consent from parents, assent from patient
AlysonSulaski Wyckoff, Associate Editor
AAP Technical Report
By the time a 16-year-old and her mother came to see a pediatric surgeon about a breast
abscess, the girl’s mother had concluded that the treatment should be an incision
But surgeon Aviva Katz, M.D., M.A., FACS, FAAP, turned to the patient in a discussion
of the options: Trying antibiotics first, she suggested, might lend itself to needle
aspiration and minimize any scarring on the breast.
Initially, including the daughter in the discussion process didn’t sit well with the
“The mother was very insistent at first that I speak with her, that she makes the decisions,” Dr. Katz said. “I was finally able to have the mom calm down
enough that I could work primarily with the teenager and make a plan that met her
goals for minimizing the number of days she would need to be at the hospital, while
at the same time minimizing any scarring on her breast.”
While parents generally are recognized as the ethical and legal medical decision-makers
for their children, pediatric patients — especially teens and preteens — should participate
in decision-making commensurate with their development, according to a revised policy
statement and technical report, Informed Consent in Decision Making in Pediatric Practice from the AAP Committee on Bioethics. Dr. Katz is a lead author of the reports, which
are available at http://dx.doi.org/10.1542/peds.2016-1484 and http://dx.doi.org/10.1542/peds.2016-1485 and will be published in the August issue of Pediatrics.
Essential part of health care
Previous AAP statements recommended obtaining informed consent from parents or legal
guardians; the most recent (1995) statement affirmed that patients should be included in the process. The 2016 policy reflects how pediatric decision-making
is evolving in response to changes in information technology, scientific discoveries
and legal rulings.
Pediatric practice is unique in that developmental maturation allows for increasing
inclusion of the child’s and adolescent’s opinion in medical decision-making. Despite
the Academy’s longstanding view that older patients should be involved in the process,
the technical report says there have not been “widespread understanding and endorsement
among practitioners” of pediatric assent or refusal.
“What we’re hoping to make clear with this statement is that everything you would
normally do, where you would normally ask the parents for permission, you should be
working with the child in terms of assent,” Dr. Katz said.
That doesn’t mean soliciting a child’s assent if the treatment or intervention is
essential. But the patient should be told that and not deceived.
Assent from children as young as 7 years can foster moral growth and developing autonomy,
according to the policy. Around that age, children enter a stage of development that
allows for limited logical thought processes and the ability to develop a reasoned
decision. Older adolescents, especially those who have dealt with chronic health issues,
may be perfectly capable of engaging in the informed consent or refusal process for
proposed goals of care.
“Let’s empower our preteen and teenage patients,” Dr. Katz said. “Let’s really empower
them. The more we involve them in medical decision-making, the better they’ll be at
medical decision-making and the stronger they’ll be in terms of partnering with their
physicians as they become adults.
Being open is critical for those with potentially life-threatening diseases, as well,
“We can’t expect anybody to make good decisions when they are in the ICU on a ventilator
on medication,” Dr. Katz said, “which is why we have to be more transparent working
with our teens … before they are at that point.”
In discussions with minors, clinicians must be adept at using developmentally appropriate
language, a skill most pediatricians already have mastered.
When it comes to parents, however, it’s not always easy to gauge their medical literacy
level. Low health literacy, including in non-English speaking families, can lead to
bad health outcomes, so trained interpreters are vital during the informed consent
When an adolescent turns down a recommended treatment, it can be ethically and emotionally
challenging. The involvement of psychiatric counselors, ethicists, child life specialists,
social workers or other consultants may be necessary to help resolve the conflict.
That’s why knowledge of state laws on such treatment refusals is critical.
But dissent by a patient should carry considerable weight if the proposed intervention
is nonessential, according to the policy. Young adults older than 18 who have no cognitive
impairments legally can make their own decisions.
The reports also state that informed consent and assent obtained from children involved
in research are clearly mandated, in contrast to the “recommended” guidance in clinical
Informed consent/permission/assent/refusal is a process, not a discrete event. It
requires information sharing in ongoing physician-patient-family communication and
Surrogate decision-making by parents/guardians should seek to maximize benefits for
the child by balancing health care needs with social and emotional needs within the
context of overall family goals, religious and cultural beliefs, and values.
Physicians have a moral obligation and legal responsibility to question and, if necessary,
to contest both the parents’ and the patient’s medical decisions if they put the patient
at significant risk of serious harm.