Parents Of Dying Newborns Need Clearer Explanation Of Options

http://www.hopkinschildrens.org/newsDetail.aspx?id=5322

September 12, 2008
Renee Boss, M.D.
Misunderstanding is rife

Parent-doctor discussions about whether to maintain or withdraw life
support from terminally ill or severely premature newborns are so plagued
by miscommunication and misunderstanding that they might as well be in
different languages, according to a small but potentially instructive new
study from Johns Hopkins Children?s Center reported in the September issue
of Pediatrics.

In-depth interviews with 26 mothers of babies who died shortly after birth
at three mid-Atlantic hospitals revealed that what mothers said they were
told by doctors was often at odds with what physicians recorded in the
medical chart with respect to options offered and accepted. This
qualitative study explored themes rather than frequencies and
investigators did not report specific frequencies of responses as part of
the study.

A range of choices exists for managing critically ill newborns, those born
with lethal anomalies or at less than 22-25 weeks gestation, including
orders to perform aggressive resuscitation to delivering compassionate
care only. Parents and doctors must often make complex decisions in a
matter of minutes, a situation compounded by the parents? emotional stress
and, often, the new mother?s own medical status.

Results of the interviews show that few mothers recalled discussing the
full range of options, from aggressive resuscitation to palliative care
through the end of life. In fact, few recalled discussing resuscitation as
an option at all, while the written medical records often indicated that
such options were discussed. For example, one mother reported being told
nothing could be done for the newborn, while the medical chart indicated
that various options were discussed at length.

Many moms found doctors? language confusing. Few recalled being offered
comfort end-of-life care, even when the discussion was noted in the
medical charts.

Tuning out much of doctors? grim predictions about morbidity and death,
most mothers said they based their decisions about life support on things
such as hope, spirituality and religion.

?What this study tells us is doctors should become better at delivering
grim prognoses unequivocally, yet compassionately, but many doctors are
uncomfortable expressing emotion during such intense moments,? says study
investigator Nancy Hutton, M.D., head of the pediatric palliative care
program at Hopkins Children?s. ?Some doctors might think showing empathy
and being positive could give parents a false sense of hope, but there are
ways to be hopeful and realistic at the same time, we just need to train
doctors to do it better.?

?We found that the parents of gravely ill newborns, who are understandably
overwhelmed are quite confused by the often technical and vague ?doctor
speak?,? says lead researcher Renee Boss, M.D., a neonatologist at Hopkins
Children?s. ?We, as physicians and caregivers, really need to come up with
a clearer way of talking with parents during this incredibly hard time.?

Most mothers said they wanted to make decisions together with the doctors,
not alone. They reported mistrusting physicians who seemed detached and
appeared to be acting ?by the book.?

Because mothers in the study reported a deeper sense of trust toward
physicians who expressed emotion, regardless of the prognosis they had for
the infant, researchers say obstetrics and neonatology training should
emphasize paying attention to emotion and expressing empathy when
delivering bad news. Also, physician organizations, such as the American
Academy of Pediatrics, should address this need with new guidelines on how
physicians should discuss life-sustaining options with parents.

The interviews took place on average three years after the infant?s death.

Other investigators in the study: Pamela Donohue, Sc.D., Anna West,
M.H.S., and Leslie Sulpar, M.S.N., all of Hopkins.


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