This ethical debate itself is not new, the authors acknowledge in
the journal Pediatrics, where they make a case for strengthening
guidelines on pediatric assent.
"In our work, we noticed that there are lots of patients who lack
the capacity to make decisions for themselves but who nonetheless
have strong preferences about how they want to be treated," said
lead author Jason Wasserman of Oakland University in Rochester,
Michigan.
"They don't necessarily understand fully, or reason well, about
their care, but they still often have firm preferences about what
they want," he told Reuters Health by email.
"This doesn't mean we always give kids what they want; sometimes we
are morally obligated to treat them over their objections because
it's in their best interest," Wasserman said. "But if we want to
treat kids as persons, then we have to solicit and take seriously
their preferences."
Wasserman and colleagues cite a 1995 letter to the editor of the
same journal written by pediatrician and ethicist William Bartholome,
in response to a revised statement on pediatric assent from the
American Academy of Pediatrics' (AAP) Committee on Bioethics.
Bartholome said the organization's statement didn't show enough
respect for children, and that doctors should always ask for
permission and apologize when they act against their patients'
wishes.
Wasserman and his co-authors take up that position and offer several
suggestions to improve current guidelines.
In its latest statement on pediatric assent in 2016, the AAP said
doctors are "obliged to act out of fundamental respect for other
persons by virtue of their personal autonomy." The Committee on
Bioethics emphasized that informed consent should be seen as an
"essential part" of healthcare, both parental permission and child
assent should be included, and patients should participate in
decision-making as appropriate for their developmental phase.
Wasserman and colleagues say this doesn't go far enough. Some
pediatric ethics organizations say a child's assent shouldn't be
solicited if treatment is inevitable, they note. Instead,
pediatricians should ask kids about their preferences, even if they
already know they ultimately can't grant them.
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"And even when treating those kids over their objections is
ultimately the right thing to do, pediatricians should acknowledge
that the child has experienced that treatment as a harm," Wasserman
said.
He and his colleagues offer an example to illustrate the doctor's
moral obligation to the child. In the scenario, a pediatrician sees
a 4-year-old who needs to have an abscess removed. When the child
sees the needle for the local anesthetic, he begins to cry and
flail, saying he doesn't want the shot. The doctor explains to him
why the shot is needed and how it will help him, and just before the
injection, says, "Sorry, buddy."
Apologies demonstrate respect and are meant to honor a patient's
objection, the commentary authors write. At the same time, apologies
are not a concession of moral failure or expression of guilt.
"I appreciate the authors' concern for ensuring the children's
voices be heard in their healthcare. At the same time, I do not
think their position is that different from the AAP's position,"
said Bob Macauley, chairperson of the AAP Committee on Bioethics.
"The one point of divergence is whether the child's agreement should
be sought in situations where refusal cannot be honored," he told
Reuters Health by email. "The AAP believes that a choice is only a
choice if it's really a choice."
The conversation should also include the parent, who plays a vital
role in confirming assent and building trust between doctor and
child. This is particularly true when the child is young or a
newborn, said Margaret Moon, chief medical officer at Johns Hopkins
Children's Center in Baltimore, Maryland. Moon served on the
2015-2016 AAP Committee on Bioethics.
"Parents and pediatricians together should figure out what level of
engagement is appropriate," she told Reuters Health by phone. "It
requires close teamwork for each individual child and each
individual treatment to ensure the child is as engaged as possible."
SOURCE: https://bit.ly/2Ws1TZ1 Pediatrics, online October 30, 2019.
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