Boston Children’s Hospital’s own in-house ethicist
questioned the hospital’s handling of the high-profile dispute over the care of
Justina Pelletier that broke out between her parents and her doctors, according
to documents in the lawsuit that is underway in Suffolk Superior Court.
Pelletier’s doctors soon cut her parents out of the decision
making, and the couple’s daughter ultimately ended up in the hospital’s locked
psychiatric unit for nine months, with the state’s child protection agency
assuming custody.
Christine Mitchell, longtime director of Children’s
Hospital’s Office of Ethics, e-mailed other hospital employees reviewing
14-year-old Justina’s care in 2013 to say she felt that her medical team should
improve communications with her parents, Linda and Louis Pelletier.
Mitchell said she worried the team’s decision to shut the
parents out of meetings and decisions about care was counterproductive.
“I am concerned that getting people together . . . who all
share the experience of difficult conversations with these parents (including
us) can lead to a tendency to see the parents as the problem and over-determine
a solution that works against re-uniting Justina and her parents,” Mitchell
wrote.
Mitchell’s May 7, 2013, e-mail was sent roughly three months
after the Pelletiers rushed their daughter to Children’s for care — and about a
month into her stay in the hospital’s locked psychiatric wing.
The e-mail was one of several hospital communications the
Pelletiers’ lawyers shared with jurors Thursday in a case that pits parental
rights against doctors’ authority to direct treatment.
The Pelletiers accuse Children’s and four of its providers
of violating the family’s civil rights by telling them the state would take the
teenager away if her parents didn’t consent to the doctors’ treatment plan and,
after she was removed from their custody, limiting their ability to see her.
They also allege negligence by the four providers for
treatment decisions that they say ignored the regimen set by her doctors at
Tufts Medical Center. Tufts was treating Justina Pelletier for mitochondrial
disease, a group of rare genetic disorders that affect how cells produce
energy.
Days after the Pelletiers raced to Children’s in February
2013, on the advice of Justina Pelletier’s lead doctor at Tufts, the Children’s
specialists determined that Pelletier’s health problems — difficulty walking,
eating, and slurring speech — were largely psychiatric. They recommended
stopping the mitochondrial medications prescribed by her Tufts doctor and said
she needed inpatient psychiatric care instead.
Pelletier’s parents sharply disagreed with the Children’s
team’s diagnosis and treatment plan; they believed she was suffering from
mitochondrial disease, not from a mental health issue. So the Children’s
providers contacted the state Department of Children and Families, saying they
suspected her parents were overmedicalizing her, placing her in jeopardy.
That’s when DCF stepped in and a Juvenile Court judge awarded the state
custody.
But e-mails shown to jurors on Thursday indicated that some
of the Children’s specialists who were treating Pelletier thought her problems
might be connected to mitochondrial disease. Others thought both mito and
psychiatric problems were fueling her ailments.
“It sounded clear to me from our meeting with all the
involved clinicians [on May 3, 2013] that the mitochondrial disease . . .
diagnosis stands,” Mitchell wrote in her e-mail to her Children’s colleagues.
“I’m leaning toward stressing the med-psych dual diagnosis
situation this patient has and clarifying for parents how to participate in
helping their daughter.”
Another string of e-mails from early May 2013 shared with
jurors indicate the hospital’s chief psychiatrist, Dr. David DeMaso, was upset
that Mitchell had called for an ethics consultation with Pelletier’s
psychiatric care team. Although Pelletier had already spent a month in the
Children’s psychiatric unit, DeMaso said the psychiatric team had not yet met
with other hospital providers to map out a care plan.
“I thought your calling together such a meeting was
premature,” DeMaso said. The psychiatric staff “needed to sit down (and should
have already sat down) with the other medical providers . . . prior to any
ethics (or other) consultation to discuss this youngster and develop an
approach and management plan.”
“I did not see this as the job of the Ethics Committee,”
DeMaso wrote.
Lawyers for Children’s and one of the doctors the Pelletiers
are suing did not address the e-mails during testimony on Thursday. The lawyers
instead questioned the qualifications of a bioethicist called by the
Pelletiers’ lawyer to offer expert testimony about the e-mails and Justina
Pelletier’s care.
The ethicist, Diane O’Leary, a visiting fellow at the Rotman
Institute of Philosophy in Canada, said the Children’s records she reviewed did
not accurately reflect that some providers at Children’s thought mitochondrial
disease was at least partially linked to Pelletier’s problems.
“That disparity had a very big impact” on the Pelletiers’
involvement in their daughter’s care, O’Leary said.
But Children’s lawyers noted that O’Leary had no medical
training and was not qualified, they said, to comment on standards of care.
https://www.bostonglobe.com/metro/2020/01/23/children-hospital-ethicist-questioned-justina-pelletier-treatment-documents-show/4J3GUoZLtWvaHg8NcXpvyJ/story.html
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