With the focus on evidence-based medicine, clinical practice guidelines and standards
of care, the practice of pediatrics often looks black and white. However, when a child
refuses to take asthma medication or doesn’t want chemotherapy, pediatricians are
confronted with shades of gray.
Cases in this murky area will be presented during an interactive group forum titled
“Minors and Medical Decision-Making: Can a Child Refuse Treatment?” The session will
be held from 8:30-10:00 am Saturday, Sept. 16 (I1050) and again from 8:30-10:00 am
Sunday, Sept. 17 (I2052).
“Our goal is to think about when do children (and their parents) have the right to
refuse medical care,” said Lainie Friedman Ross, MD, PhD, FAAP, who will lead the
session with Joel Frader, MD, MA, FAAP. Both are members of the AAP Section on Bioethics,
and Dr. Frader also is a member of the Section on Hospice and Palliative Medicine.
The pair will outline an ethical framework to help guide decision-making and then
will present four or five cases for discussion by attendees. The cases may be based
on situations they have encountered as practicing pediatricians.
Dr. Frader is division head of pediatric palliative care, Lurie Children’s Hospital
of Chicago, and A Todd Davis Professor of Academic General Pediatrics/professor of
bioethics and medical humanities, Northwestern University Feinberg School of Medicine.
Dr. Friedman Ross is Carolyn and Matthew Bucksbaum Professor of Clinical Ethics; professor,
Departments of Pediatrics, Medicine and Surgery; and associate director, MacLean Center
for Clinical Medical Ethics, University of Chicago.
After attendees weigh in, Dr. Friedman Ross and Dr. Frader will explain how they would
approach each case.
“Joel and I don’t fully agree on everything,” Dr. Friedman Ross said. “There’s a lot
of overlap, but we also want to make sure that we picked at least one case where we’re
going to have at least a little bit of disagreement between us to show people that
decision-making in pediatrics isn’t black and white. There’s a lot of gray.”
Factors to consider when facing treatment refusals include whether ongoing medical
care is needed for a chronic illness vs. providing a one-time treatment; the child’s
age and maturity; whether the parents and child agree; likelihood of cure with treatment;
likelihood of an adverse event with or without treatment; and reason for refusal,
explained Dr. Friedman Ross.
For example, has an adolescent who is refusing chemotherapy just been diagnosed with
cancer or has she already been through a round of treatment?
“Kids who have experience with an illness may see things very differently than kids
who are getting diagnosed the first time,” Dr. Friedman Ross said. “Many of us in
pediatrics feel more comfortable including the child as they become more and more
involved in their own care just because now they have experience. They understand
what are the benefits, what are the costs. How much pain have they already tolerated
and how much more pain are they willing to tolerate.”
Whether it’s the child or the parents who are refusing treatment, communication is
“A lot of what we’re going to say is when there’s disagreement, talk,” Dr. Friedman
Ross said. “No matter what the question is, the answer is let’s talk about it. Let’s
negotiate with the family.”