Until Every child is well

the boston Childrens hospital & Justina

Margaret Stegall
April 21, 2015
Cases in Public relations

Table of Contents
Abstract.2
Summary of the Case.3-4
Timeline of the Case..5
Hospital History..6
Hospital Public Relations6
Public Response...7
Media Coverage...8-9
Analysis....10-11
Impact on the Hospital...12
Conclusion..13
Bibliography.....14

Abstract
As Americans become more aware of reporting abuse and with the rise of
medical child abuse, hospitals are being forced to increase their vigilance
and better define their reporting policies. New rules and new cases make
following mandatory confidentiality laws more difficult. This case study
examines the Boston Children Hospitals policies and procedure in the
case of one of their patients, Justina Pelletier. The study examines how
and when the hospital chose to respond to criticism from the media,
government officials, and the public. While the hospital was bound by
confidentiality laws, the case study examines how they chose to follow
protocol and how they could have better answered demands from their
publics.

Summary of the Case

On February 10, 2013, 14-year-old Justina Pelletier was taken by ambulance to Boston
Childrens Hospital. She could barely walk, was having trouble talking, and wasnt
eating. Just a few weeks prior Justina participated in a holiday ice-skating show. She
had been sick off and on but for the most part was a happy, active girl. Her mother,
Linda, told doctors that Justina had been treated at Tufts Medical Center for a rare
metabolic disorder called Mitochondrial Disease.
After several days of observation and treatment the doctors at Boston Childrens
hospital found no physical explanation for her symptoms and began to suspect that
Justinas illness was psychiatric and file a complaint of medical child abuse, defined as
the non-accidental commission of any act by a caretaker upon a child
under age 18 which causes, or creates a substantial risk of, physical or
emotional injury; or constitutes a sexual offense under the laws of the
Commonwealth; or any sexual contact between a caretaker and a child
under the care of that individual by the Massachusetts Code of Laws. Doctors
diagnosed her with Mnchausen syndrome by proxy, a behavior pattern in which a
caregiver fabricates, exaggerates, or induces mental or physical health problems in those
who are in their care. Upon examining the evidence a judge gave custody of Justina to
the Massachusetts Department of Children & Families (DCF) under the care of the
Boston Childrens Hospital. She was transferred to the psychiatric unit.
As physicians at BCH examined Justina, talked to her mother, and looked into her
medical records, they discovered several inconsistencies. First, Mitochondrial Disease is
difficult to diagnose. The symptoms of Mitochondrial Disease could be easily explained
by many things. Symptoms include fatigue, muscle weakness, cramping, gastrointestinal
pain, and failure to gain weight. None of the symptoms by themselves can be absolutely
linked to Mitochondrial Disease, and records from Tufts Medical Center do not show
that tests to diagnose Justina absolutely were ever performed, and when BCH staff ran
test they found no link from the symptoms to Mitochondrial Disease. Second, Linda
Pelletier initially made statements about Justinas care and symptoms and they changed
her story when doctors informed her that some things about Justina were more in line
with a psychological disorder. Lou Pelletier became verbally and physically abusive to
hospital personnel when doctors requested permission to run psychological tests.
Finally, in their initial conversations with Justina, doctors learned that many of
Justinas symptoms started after her parents began visiting doctors and claiming she
was suffering from Mitochondrial Disease. This was consistent with the doctors
suspicions that Justina had Mnchausen syndrome by proxy. In other words, the
suggestion by her parents that she was sick had actually begun to affect Justina
psychologically and physically. That She later changed her story when she was taken
away from her parents.
In the meantime, a Judge determined there was not enough evidence to take custody
away from Lou and Linda Pelletier, Justinas parents, and appointed a special

investigation. While this was not the first time parents and physicians disagreed over a
patients care, it is a landmark case in determining the boundaries of medical child
abuse and the role of physicians in such cases. This case shows the action, or lack
thereof, Public Relations professionals at the Boston Childrens Hospital took in
response to the negative publicity and public pressure they faced in the wake of Justinas
diagnosis and treatment.
In March of 2014, over a year after she was admitted to Boston Childrens Hospital,
Justina was placed in the permanent custody of the state of Massachusetts. A judge
criticized the Pelletiers for their neglect of Justina and their lack of cooperation to those
who tried to help her. This ruling attracted the attention of the nation, and people began
to protest the states handling of Justinas case and the hospitals psychiatric diagnosis.
Several Facebook groups, such as Free Justina Pelletier Now, A Miracle for Justina,
and Boston Childrens HospitalStop Stealing Our Children were formed and
continue to offer support to Justinas family and protest the hospital. Their efforts
attracted the national media and governmental attention. High level health officials put
together a reunification plan and re-instated the familys visiting rights, even allowing
Justina to go home for short periods of time.

On June 18, 2014 Justina was returned home to her parents, who were given full
custody after a Judge decided their circumstances had changed. She continues to be in
and out of various hospitals, and doctors still fear her condition to be psychologically
based as a result of neglect.
Justina
Doctors file
Justina
Pelletier is
complaint
transferred to
brought to
with
psychiatric
Children's
Massachusetts
unit
Hospital
DCF

2013

Feb.
10

Dec.

Feb.
14

Hearing held
over
permanent
custody of
Justina

Dec.
20

April

Judge
appoints
special
investigator

2014

Jan.
17

Justina enters
residential
treatment
center

Mar.
25

June
17

Judge grants
permanent
custody of
Justina to
state

Judge returns
custody of
Justina to
parents

May
12

Sept
.

State
announces
reunification
plan

Justina
admitted to
Yale-New
Haven
Childrens
Hospital

June
6

2014

Dec.
1

DCF drops
opposition to
returning
custody to
parents

Justina
admitted to
Yale-New
Haven
Childrens
Hospital

History of Boston Childrens Hospital

Boston Children's Hospital (BCH) is a 395-bed comprehensive center for pediatric
health care. As one of the largest pediatric medical centers in the United States, BCH
offers a complete range of health care services for children from 15 weeks into gestation
to birth through 21 years of age. According to their website, the hospital treats
approximately 25,000 inpatient admissions each year and 200+ specialized clinical
programs schedule 557,000 visits annually. Last year the hospital performed more than
26,500 surgical procedures and 158,700 radiological examinations.
The hospital was founded on July 20, 1869 by Dr. Francis Henry Brown, a Civil War
surgeon. With more than 680,000 square feet of laboratory space, Children's is home to
the world's largest research enterprise based at a pediatric medical center. Two hospital
doctors have won the Nobel Prize for Medicine, and six prestigious Lasker awards for
medical innovation.

Boston Childrens Hospital is the nations number one childrens hospital. Staff includes
approximately 1,026 active medical and dental staff, 384 associated scientific staff, 922
residents, fellows and interns, 1,596 full-time nurses, and close to 9,000 other full and
part-time employees. More than 800 volunteers work thousands of hours each year to
support the hospital staff and patients.

Public Relations at Boston Childrens Hospital

Public relations for the hospital is handled internally. Because of HIPPA and other
confidentiality laws, BCH is not at liberty to discuss
For the first several months
individual patients with the media. This created an issue
after Justina was removed
for the hospital in this case, as they were often accused by
from her parents custody Lou
protesters and the media of staying silent when they
and Linda Pelletier were
should offer explanation. The BCH website states,
restricted from sharing their
Under the Health Insurance Portability and
story due to a gag order.
Accountability Act (HIPAA) of 1996, no
information other than a one-word condition on
a patient's medical status is made available to any
In February 2014 Lou Pelletier
member of the media unless/until Public Affairs
broke the gag order and went
receives written authorization from a patient's
on social media. Since that
parent or guardian.
time various Justina Pelletier
Facebook pages have gotten
In Justinas case, her parent/guardian changed often. Her
over 75,000 likes and
parents refused to cooperate with Hospital personnel and
hundreds of media
the Massachusetts DCF was reluctant to give the Hospital
impressions.
permission to disclose Justinas condition in detail for
fear of further lawsuits.
Dr. Phil, ABC News, Fox News,
So the question remains, what is the best course of
The Blaze, the Boston Globe,
action for the Boston Childrens Hospital as they
NY Daily News, and dozens
look to preserve their public image and provide
more news organizations
the best care for their patient?
carried the story.

As a result of the extensive

news coverage, Massachusetts
politicians got involved. The
DCF and the Judge overseeing
the case received over 5,000
phone calls inquiring about
Justinas case.

Personhood USA petitioned

the Massachusetts State
legislature to pass a resolution
for the release of Justina to her
parents.

Public Response

Media Coverage
Most of the coverage of the Justina Pelletier story came from the Boston Globe and
local Boston TV stations. Eventually, through this coverage and social media, the story
received national attention.

----

Analysis
We acknowledge the tremendous efforts of our staff in caring for this patient. We are
proud of their work and positive impact on the patient. Our clinicians are particularly
distressed that the inaccuracies surrounding this case have caused [undue] concern for
the many children and their families with mitochondrial disorders in our care.
Misleading reports suggesting that the hospital holds patients in its inpatient
psychiatric unit do not recognize the role of DCF as the legal guardian or the
challenges inherent in finding appropriate lower acuity facilities for certain patients.
In all cases, transfer to a less restrictive setting occurs as soon as an appropriate
placement setting becomes available. Patient privacy prevents the hospital from
commenting further." Boston Childrens Hospital spokesperson

Our primary goal has always been the health and well-being of Justina. We want the
parents to be able to work with the providers and courts to ultimately move Justina
back to her home state of Connecticut. That is the objective, and is consistent with our
previous efforts to find an appropriate placement near her home. A medical team has
been identified at Tufts, the familys provider of choice, with the clinical expertise to
care for Justina. DCF spokesman Alec Loftus
There are very few primary source examples due to the confidentiality laws binding both
the Boston Childrens Hospital and the Massachusetts DCF. However, the hospital took
the following steps in their care for Justina.
1. Support decisions of medical staffthroughout the entire ordeal BCH officials
maintained that their doctors made the best decisions for the health and wellbeing of their patient. Hospital spokespeople defended the physicians caring for
Justina.
This was an important and positive choice by the hospital. Internal relations
are always important, but especially so in a setting where lives are on the line
and physicians need to be free to make the best choice for the patient, regardless
of public opinion.

2. Maintain confidentialityit was often confusing knowing who was Justinas legal
guardian and who therefore had access to her medical records and who was
authorized to make decisions about her care. Due to the sensitive nature of the
case and the intense public interest, the hospital maintained a policy of not
discussing the case with the media.
This decision allowed the hospital to avoid legal action for breaking
confidentiality and HIPPA laws. However, it earned them criticism from people
who had taken a personal interest in Justina.

3. Distance themselves from the Massachusetts DCFInitial public opinion was

that the physicians of the BCH took custody of Justina away from her parents.
However, as mandatory reporters of suspected abuse, the hospital staff was
required to inform DCF of the inconsistencies with Justinas records. From there,
it was their job to treat Justina as the DCF requested. It was important for the
hospital to announce to the public that they were following protocol and that they
played no part in the custody battle over Justina.
This was perhaps the most vital step, yet it was not terribly effective. Justinas
family and supports still blame Boston Childrens Hospital for taking Justina
away and for changing her treatment. BCH did a good job of separating
themselves and their response from the DCF, but they sacrificed their public
perception to protect their physicians. No BCH staff names were released at
any time in an effort to prevent people from personally attacking Justinas
doctors. Many people called for BCH to release the names and accused BCH of a
cover-up when they did not. In the case of Josie King, a girl who died as a result
of physician error at Johns Hopkins Hospital, the hospital released a statement
accepting full responsibility for her death. While this case does not involve a
death or even necessarily physician error, it would have been wise to explain
their legal responsibilities and limits in a public statement and detail whatever
information they could give on their website (nothing about Justina appears on
any official hospital website or publication.)
Despite efforts to remain separate from DCF, the Pelletiers have linked the two
organizations together and are fighting them as a unit.
The following is an exerpt from a March 2014 interview the Pelletiers had with
Dr. Phil.
Linda Pelletier: I feel she has been kidnapped from me and our family. I do think
that Boston Childrens Hospital is trying to cover for their mistakes.
Dr. Phil: [DCF] has to be implying, accusing or insinuating that you guys are
making her sick in some way.
Lou Pelletier: Massachusetts DCF does not have its own medical director. So,
who does Massachusetts DCF rely on? Boston Childrens Hospital, Lou
responds. They can just, as a mandated reporter, report to the DCF that
somebodys violating their protocol; and once they take that child, theres not a
thing you can do about it.

The Pelletiers effectively used Twitter and Facebook to get the word out, using the
hashtag #FreeJustina and calling on politicians to make a statement on their behalf.

10

Impact on the Hospital

In 2014 Boston Childrens Hospital was named the Best Childrens Hospital in the
Nation and BCH was named one of Beckers Hospital Reviews 100 Great Hospitals in
America in 2014.
The hospital treated over 60,000 patients in 2013, 2014, and is on schedule to do the
same in 2015. Justinas story, and the publicity that came with it, did not affect the
hospitals performance or success rates.
However, it did affect donations to the hospital. Each year Boston Childrens releases an
annual donor report. In 2013 BCH raised $149.8 million from corporations and
individuals. In 2014 that number was down to $119.1 million, a difference of $30 million
dollars. While some donors have stood by the hospital (such as Dunkin Donuts, who
gave $431,000 to BCH last year after having received negative press for their continued
support of the hospital), the dramatic and unusual decrease in donations seems to have
a direct correlation between the publicity brought by the Pelletiers. A spokesperson from
Harvard, one of the hospitals main partners, said the school is re-evaluating their
connection with BCH in light of the allegations and after a Harvard Law School
professor signed on as the Pelletiers lawyer.

Conclusion
The Boston Childrens Hospital continued to treat patients and carry out their mission
to innovate and experiment until every child is well. As a result of Justinas experience
the Hospital began studying Mitochondrial disorders and their effects on the body to
better identify and treat patients.

Justina Pelletier was returned to her family and the care of Tufts Medical Center. In
April of 2015 she underwent a procedure to hopefully find answers to the pain shes
experiencing. Justina was initially diagnosed with Mitochondrial Disorder at Tufts,
which is nearer to her familys home. It was doctors at Tufts who initially recommended
that she go to BCH, but they were quick to side with the Pelletiers. Tufts officials offered
several statements in support of Justina and her parents and urged BCH and DCF to
return Justina to her family, earning the trust of the Pelletiers and public opinion.

Justinas Law was introduced by Representative Michelle Bachmann. The law would
prohibit the use of federal funds to conduct or support treatment or research involving
a ward of the state in which the individual's health is subjected to greater than minimal
risk with no or minimal prospect of direct benefit. It has yet to be passed. Physicians
fear that passing the law would prohibit children in foster care from getting the best
treatment options. In Justinas case, physicians argued that Justinas treatment under
her parents was subjecting her to greater risk than the treatment she would receive as a
ward of the state.

The Boston Childrens Hospitals situation is unique. It is not the first example of a
hospital being caught between a family and DCF, but it is the first time a hospital
received such public outcry and attention. Their response could have been a landmark
success, but they chose to deny responsibility and failed to communicate with the public.
Although they had medical proof for the position they took in regards to Justinas care,
they did not inform their publics of the evidence that supported their decision or the
responsibility they had to their patients and physicians. At no time did they accept
responsibility or offer their sympathy to the Pelletier family, and their critics used this
impersonal approach as the heart of their attacks.

Bibliography
Berman, Beau. "CT DCF Commissioner: Pelletier 'Circus' About Parents,
Not Justina." FOX CT. N.p., 06 Aug. 2014. Web. 15 Apr. 2015.
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Is Admitted to Specialist Unit after Being Put on IV Because She
Cannot Eat." Mail Online. Associated Newspapers, 08 Dec. 2014.
Web. 15 Apr. 2015.
Corbin, Cristina. "Justina Pelletier Back in Hospital, Family Says." Fox
News. FOX News Network, 07 Oct. 2014. Web. 15 Apr. 2015.
James, Susan Donaldson. "Mom of Sick Connecticut Teen 'Collapses' in
Court After Judge Sends Kid to Foster Care." ABC News. ABC News
Network, 25 Feb. 2014. Web. 15 Apr. 2015.
"Timeline of the Justina Pelletier Case - The Boston Globe."
BostonGlobe.com. N.p., n.d. Web. 15 Apr. 2015.
Wagner, Meg. "Justina Pelletier Goes Home." NY Daily News. N.p., 18 June
2014. Web. 15 Apr. 2015.
Wen, Patricia, and Neil Swidey. "A Difficult Return to Hospital for Justina
Pelletier - The Boston Globe." BostonGlobe.com. N.p., n.d. Web. 15
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