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 Over the years, the pendulum has swung from a “protective” approach
of telling kids little or nothing to avoid worrying them about bad
news to an “open” approach of giving children all the facts and
empowering them to make their own treatment choices.
Today, however, doctors often struggle to gracefully navigate this
continuum and tailor the approach to specific medical situations as
well as the individual children and families involved, Dr. Bryan
Sisk of St. Louis Children’s Hospital and colleagues argue in a
paper in Pediatrics.
“When children have a poor prognosis, our first reaction is to
protect them by holding back information because we often fear that
sharing bad news is going to hurt them, but many children benefit
from knowing more about their illness,” Sisk said by email.
“If we try to hide bad news, some children will think their families
are acting strangely because they have done something wrong,” Sisk
added. “Just like adults, not every child wants prognostic
information, but we should still be on the lookout for signs that
they do.”
Beyond the child’s age, the family’s religious and cultural beliefs
may influence when – if at all – it makes sense to talk to kids
about their diagnosis and what the expected outcomes may be, Sisk
and colleagues note.
Pediatrics is also unique because parents have a legal right to make
treatment decisions for their children, an idea that can sometimes
seem more logical for a toddler that needs ear tubes than for a
teenager confronting terminal cancer.
Some recent research suggests that kids, particularly older teens,
can cope well even with the bleakest medical news, the authors
write.
But particularly in families where parents are accustomed to making
every decision for their child, doctors may find themselves engaging
in what the authors dubbed “shuttle diplomacy,” essentially acting
as go-betweens to find a comfortable middle ground that lets
children get the information they want while allowing parents to
still feel in control.
“This is not an 'all or nothing' situation,” said Dr. Gary Freed, a
pediatrics researcher at the University of Michigan’s Mott
Children’s Hospital in Ann Arbor.
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“There are also many factors that come into play including family
dynamics, religious beliefs and differences in state laws,” Freed,
who wasn’t involved in the paper, added by email. “Each situation
needs to be handled individually with concern and compassion for
everyone involved.”
Doctors need to think carefully about what the goal of disclosing
medical information might be and how it might help or hurt children
and families to give kids more or less detail on their diagnosis,
the authors argue.
And even when children can’t be given all the facts, they shouldn’t
be lied to.
The best thing doctors can do is make the conversation about how to
talk about health part of routine check-ups, because that will lay a
foundation for having hard conversations when problems crop up in
the future, said Dr. Abby Rosenberg, a pediatric oncology researcher
at Seattle Children’s Hospital and the University of Washington.
“It requires some work on our part, as doctors, to really explore
all of the different nuances with patients and families about how
they like to hear information and how they make decisions in their
family,” Rosenberg, who wasn’t involved in the paper, said in a
phone interview.
“You have to check in over time, because this can change over time
and it may change on any given day depending on the situation,”
Rosenberg said.
SOURCE: http://bit.ly/2bIzRUl Pediatrics, online August 25, 2016.
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