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.
They also suggested that O’Leary’s opinion may be biased by communications she had with the Pelletiers in 2014, when the family contacted her for a consultation during Justina Pelletier’s stay at Children’s.
O’Leary is expected to continue her testimony Friday.
Kay Lazar can be reached at firstname.lastname@example.org.