Report to the Community - Akron Children`s Hospital

HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER > 2013 REPORT
Can we find new ways to bring hope and healing to children?
Why not?
Inside
Director’s Letter to the Community.................................................................... 3
A Palette of Care............................................................................................. 4
Awards and Recognition.................................................................................. 5
2013 Clinical Activity...................................................................................... 6
Research Initiatives......................................................................................... 8
Haslinger Center Highlights.............................................................................. 8
Meet Savannah............................................................................................. 10
Programs..................................................................................................... 12
Volunteers.................................................................................................... 14
Meet Marie Parker........................................................................................ 15
Meet Debbie Patterson.................................................................................. 16
Educational Activities..................................................................................... 17
Meet Jack.................................................................................................... 20
Financial Support.......................................................................................... 22
We received a beautiful letter
from one of our parents
describing how much our
palliative care team meant to
her and her family. She
addressed the letter to “The
Palette of Care Team.” In that
phrase, she described so well
what we strive to be – a
transdisciplinary collection of
colors that blends together on a
canvas to paint the best picture
of care for all of our families.
Each painting is unique,
created by our patients who
hold the brush. The artwork
shown above is one child’s vision
of “the palette of care team” in
her life – 11-year-old Cassidy
Jackson.
About Akron Children’s Hospital
Akron Children’s Hospital is dedicated to improving the
health of children through high-quality patient care, education,
advocacy, community service and research. We are one of
the largest pediatric hospitals in the U.S. and are proud to
be ranked among the best children’s hospitals in the nation.
More than 700 providers strong, our dedicated staff handles
nearly 800,000 patient visits annually at our 2 hospital
campuses and through our network of primary and specialty
care locations. Our home care and school health providers
bring medical care to children in their homes and schools.
We also collaborate with other health systems to provide
neonatal and pediatric care in their facilities.
As a teaching affiliate of Northeast Ohio Medical University,
we are training a new generation of physicians, and our
research institute is advancing pediatric medicine and
improving patient care.
Learn more at akronchildrens.org.
Haslinger Family Pediatric Palliative Care Center
Akron Children’s Hospital
One Perkins Square
Akron, OH 44308
330-543-3343
akronchildrens.org
2 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
> From the Director
Hello Friends,
We hope you’ve had a wonderful year since our last update to you.
In this year’s Report to the Community, we ask the question, “Why not?” This concept defines
our culture, as we strive to meet the physical, emotional and spiritual needs of patients facing
complex, chronic or serious medical conditions.
Thanks to a 3-year grant from the Center for Medicare and Medicaid Innovation received in
partnership with Nationwide Children’s Hospital, we added an additional social worker and
nurse case manager to our complex care team in 2013. This effort will continue through
June 2015, along with data collection and research, which we hope will result in long-term
changes in care delivery. Our goal is to ensure that children with complex medical conditions
receive effective, comprehensive and cost-efficient care – a scenario in which everyone wins:
the child, family, providers and payers.
Sarah Friebert, MD
Director, Pediatric
Palliative Care
Why not?
In April 2013 we increased our use of technology when our medical records went completely
electronic. We’re now able to create an interactive care plan for our patients, which allows
all Akron Children’s providers to become familiar with the goals for each child.
We received Advanced Certification in Palliative Care from The Joint Commission, the
organization that accredits healthcare organizations and programs in the United States.
Joint Commission certification is recognized as a symbol of quality and commitment to
performance standards, so this is a great achievement for our program. This certification
has also allowed us to review our program’s overall structure and improve our methods so
we can be more efficient and provide better care.
We also implemented a new caregiver support program, called Schwartz Center Rounds.
This national program gives staff a forum to explore the emotional and psychosocial dimensions
of the care they provide. Sessions are held monthly on a variety of topics related to ethical
issues, difficult situations and other causes of emotional distress for providers.
We are extremely grateful to our generous donors, especially those who spend months
planning fundraisers for us. The Courage for Carina Wine Tasting with a View event
celebrated its 4th year in 2013, raising more than $34,000 and bringing the grand total
raised to more than $100,000. The first Friends and FUNds event was held in October.
This cocktail party was organized by enthusiastic volunteers and raised $11,000. Eroc Music,
with the help of Dave Lasco and several other volunteers, organized a benefit concert at the
Akron Civic Theater in November. The concert, attended by around 2,000 people, raised
nearly $12,000.
These are just some of the highlights of 2013. In the following pages, you’ll read more
about our program and meet some of the children who inspire us to ask “Why not?”
as we look for new ways to advance pediatric palliative care.
Thank you for your support of the Haslinger Family Pediatric Palliative Care Center.
We truly couldn’t do what we do without each and every one of you.
Blessings,
Sarah Friebert, MD
Director, Pediatric Palliative Care
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 3
> A Palette of Care
>Can an extra layer of support promote healing?
Haslinger Family Pediatric Palliative Care Center Services
The Akron Children’s Hospital Haslinger Family
Pediatric Palliative Care Center serves children, from
before birth and into adulthood, who have complex,
chronic or serious medical conditions. Pediatric
palliative care provides an additional layer of support
for families on difficult medical journeys, in partnership
with cure-directed care.
Our nationally recognized team works in collaboration
with a child’s other healthcare providers to coordinate
care and improve communication, as well as to help
families make informed choices regarding difficult
medical decisions.
Palliative care patients receive comprehensive,
interdisciplinary care to control pain and other
symptoms. Support is also provided for emotional,
psychological, practical, spiritual, educational and
developmental issues which may contribute to
suffering or interfere with healing. Our care is
customized for each patient, allowing each family
to choose from a variety of programs and services
that will best meet their needs.
Our Mission
•To integrate legendary, indispensible and
individualized pediatric palliative care into
the journey for all children, adults and their
families living with chronic, complex and/or
life-threatening conditions of childhood.
•To provide leadership in education, research
and advocacy initiatives in pediatric palliative
care locally, regionally, nationally and
internationally.
Find us on Facebook, twitter and Pinterest
The Haslinger Family Pediatric Palliative Care Center has a Facebook page featuring updates and events,
with links to articles, websites and discussion groups on bereavement, chronic illness and more. We would love
to connect with you. Visit us at facebook.com/haslingerpalliativecare.
For more updates, you can follow us at
twitter.com@haslingerppc or at pinterest.com/haslingerppc.
4 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
> Awards and Recognition
Patient/Family Support
Advanced Certification in Palliative
Care through The Joint Commission
The Joint Commission’s Advanced Certification
Program for Palliative Care recognizes hospital
inpatient programs that demonstrate exceptional
patient and family-centered care and optimize quality
of life for patients with serious illness. The certification
emphasizes an interdisciplinary team with advanced
training in palliative care; leadership support of the
program’s goals for providing care, treatment and
services; patient and family engagement; processes
that support the coordination of care and communication
among all care settings and providers; and the use
of evidence-based national guidelines or expert
consensus to support patient care processes.
Marlene Hardy-Gomez
Ohio Nurse of the Year Award
Marlene Hardy-Gomez received the first annual Ohio
Nurse of the Year Award from the March of Dimes in
2013 for providing excellent palliative care to many
of our Neonatal Intensive Care Unit (NICU) patients
and their families. This state-wide award recognizes
exceptional nurses, creates awareness of professional
excellence and promotes the future of the nursing
profession, while advancing the mission of the March
of Dimes: to prevent premature birth, birth defects
and infant mortality. The Nurse of the Year selection
committee reviewed hundreds of applications in
17 categories, and the finalists were honored at
a formal gala in Columbus, Ohio.
After much preparation on our part, a Joint Commission
reviewer visited our program, interviewed our team
members and staff from throughout the hospital
and reviewed many documents. We were pleased to
receive Advanced Certification in Palliative Care,
and will undergo a similar site review every two
years to keep our certification. In addition, we will
submit required performance measurement data on
a regular basis.
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 5
> 2013 Clinical Activity
> New Families Served and Patient Consults – 2002 - 2013
New Families Served
Patient Consults
500
400
300
200
100
0
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
2012
Total families served - 1,886 Total patient consults - 3,037
Can we make a difference, 1 patient at a time?
> Top 6 Patient Diagnoses
> Patient Gender
2013
2013
Cardiologic17.1%
Male57.9%
Neurologic/Neurodegenerative16.1%
Hematologic/Oncologic13.1%
Complex/Chronic Female42.1%
12.1%
Sudden/Burn10.6%
Genetic/Chromosomal8.5%
All Others – 22.5%
6 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
2013
> Patient Age – 2013
16-20 yrs. - 7.8%
> Types of Insurance – 2013
Unknown - 3.9%
> 20 yrs. - 3.9%
Medicare
2.4%
None/Self Pay - 5.8%
Bureau for
Children with
Medical
Handicaps
(BCMH)
1.5%
Private - 27.5%
11-15 yrs.
11.7%
1-10 yrs.
14%
Medicaid/
Medicaid HMO
58.9%
< 1 yr. - 62.6%
Ashtabula
Lake
Fulton
Sandusky
Lorain
Huron
Trumbull
Medina
Ashland
Van Wert
Richland
Wayne
Marion
Holmes
Knox
Shelby
Delaware
Coshocton
Franklin
Perry
Muskingum
Miami
Portage
Mahoning
Stark
Tuscarawas
Other States Served
Florida Nebraska
Georgia
New Hampshire
Indiana
Pennsylvania
Maryland
West Virginia
Geauga
Cuyahoga
Erie
Summit
> 47 Counties Served
2002 - 2013
Wood
Columbiana
Carroll
Harrison
Guernsey
Belmont
Monroe
Washington
Butler
Athens
Clermont
Pike
Jackson
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 7
> Research Initiatives
>Can we raise the bar for safe, efficient care?
Setting new standards in quality patient care
In 2013, we conducted or continued work on the
following studies:
The Haslinger Center is also engaged in many quality
and performance improvement initiatives to ensure that
we deliver high-quality care as safely and efficiently as
possible. Examples of these projects include: tracking
home visit efficiency; ensuring access to resources/
support services; engaging with families to assess risk
acceptance for stem cell transplantation; developing
service standards for consultation, inpatient, outpatient
and bereavement care; monitoring team compliance
with best practices in clinical care and documentation;
developing protocols for transitioning pediatric patients
as they age into the adult healthcare system; tracking
adherence to therapy for patients with chronic pain;
and developing a protocol for critical care transport
of patients desiring end-of-life care outside the
hospital setting.
• Family satisfaction with services
• Bereaved family satisfaction with services
• Difficult Conversations Simulation Study
• Pediatric Palliative Care and Complex Congenital
Heart Disease: Improving informed decision making
at the bedside for patients, parents, siblings and
caregivers
• A Study of the Collective Soul of a Pediatric
Palliative Care Team and Interventions to Support
that Soul
• Family Functioning with Pediatric Palliative Care
• Family Bereavement and Functioning
• Softening the Impact Following Discharge from
the PICU
• PCA Tracking: Inpatient and Home
• Trends in Hospital Utilization among Children
Receiving Inpatient Palliative Care
> Haslinger Center Highlights
2002200320072008
Dr. Sarah Friebert
founded the Haslinger
Family Pediatric
Palliative Care Center.
The center received an
endowment commitment
from the Haslinger family.
The center created a
pediatric palliative care
fellowship program to
further our commitment to
education and training. To
this day, it is one of a limited
number in the country.
The center hosted a
national pediatric
palliative care conference
in Akron, attracting 480
participants from 30
states.
8 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
The center was chosen to
be one of two Pediatric
Palliative Care Leadership
Center training sites by
the Center to Advance
Palliative Care.
The Children’s Garden
of Hope & Healing was
completed.
200920112012 2013
Dr. Friebert was honored
with the Children’s Miracle
Network “Children’s Miracle
Achievement Award” for
her transformational work.
Our palliative care
fellowship program
received accreditation from
the Accreditation Council
for Graduate Medical
Education.
Akron Children’s received a
$1.2 million donation to
create an endowed chair
in pediatric palliative care,
believed to be the first of
its kind in the country.
The center received the
Circle of Life Award from
the American Hospital
Association.
The center received Advanced
Certification in Palliative
Care through The Joint
Commission.
The Emily Cooper Welty
Expressive Therapy Center
opened. It’s the region’s only
dedicated expressive therapy
facility designed for patients,
families, staff and the community.
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 9
> Meet Savannah
Rebecca, Savannah and Robert McClary
While pregnant with her first child, Rebecca McClary
of Canton had an emergency C-section at just 27
weeks. Her baby girl, Savannah, weighed only 1.2
pounds. Because Savannah had several health
problems related to her prematurity, she spent the
next 109 days in a local neonatal intensive care unit.
One of Savannah’s biggest problems is pulmonary
hypertension due to her underdeveloped lungs.
“When she finally went home, she still needed to be
on oxygen and a feeding tube, but things went well
for the next 2-1/2 months,” said Rebecca.
However, when Savannah aspirated fluid into her
lungs, Rebecca and her husband, Robert, brought
her to Akron Children’s where she was admitted to
the Pediatric Intensive Care Unit (PICU).
Her parents never anticipated this would turn into
a 4-month hospital stay or that she would need so
many procedures, including a tracheotomy to help
her breathe.
During this time, the McClarys met the palliative
care team including nurse practitioner Marlene
Hardy-Gomez and social worker Denise PowersFabian.
Since Rebecca had to quit her job during her pregnancy,
Powers-Fabian helped connect the McClarys with
financial assistance and resources available for
medically fragile children like Savannah. Palliative
care was also there to answer questions and support
Rebecca and Robert through their daughter’s long
stay in the PICU.
10 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
Although she’s now home, she still has a tracheotomy
and requires tube feeding and overnight nursing care.
Just 18 months old, Savannah’s been through a lot
in her young life.
Because she’s so susceptible to respiratory infections,
something as simple as a common cold could result in
another hospital stay.
“Our goal is to keep her out of the hospital as much as
possible,” said Rebecca, who limits Savannah’s contact
with others, especially those who might be sick.
To help the McClarys manage her care at home, the
palliative care team created a flow chart of steps they
should take in certain situations, including when to
take her to the hospital.
They include providers from pulmonary medicine,
cardiology, gastroenterology, surgery, infectious disease
and ophthalmology.
“Palliative care brought the entire team together to
coordinate Savannah’s care and have helped with
scheduling all her medical appointments,” Rebecca said.
Along with the support they’ve received from the
palliative care team, the McClarys are also blessed
with a huge support system that includes their parents,
siblings, friends and fellow church members, as well as
Robert’s co-workers at First Energy.
Although Savannah still faces challenges, she’s doing
well – thanks to the care she’s received at Akron Children’s
and the love and support that surround her at home.
“They also created a card with Savannah’s medical
information we can give paramedics in the event of
an emergency,” Rebecca said.
Although she continues to grow and get stronger,
Savannah still has many health problems common
in premature babies. Besides pulmonary hypertension,
she has bronchopulmonary dysplasia, difficulty
swallowing and an atrial septal defect, commonly
known as a hole in the heart. She’s also been
evaluated for possible vision problems.
“The hole in her heart is closing on its own, so,
fortunately, she won’t need surgery to repair it,”
said Rebecca.
To manage these conditions, Savannah is under
the care of several Akron Children’s specialists.
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 11
> Programs
>Can we find new ways to ease suffering?
Supporting patient families on their journey
Emily Cooper Welty
Expressive Therapy Center
Akron Children’s Emily Cooper Welty Expressive
Therapy Center is the only facility in northeast Ohio
designed for patients, families, staff and the community
to receive holistic healing through art, music, theater
and dance. Here patients use the creative arts to deal
with illness, cope with difficult emotions and find
comfort. The center is staffed by art and music therapists
who are trained to address the psychosocial and
physiological concerns that accompany serious illness.
In 2013, the center provided 1,156 patient encounters –
595 for art therapy and 561 for music therapy. In
addition, more than 4,000 people attended workshops,
group sessions, performances or tours of the center.
Many community organizations, musicians, actors and
dancers conducted workshops or performed.
Expressive Therapy also held its first community open
house in 2013, which was appropriately named the
Art of Hope. There were patient-created paintings,
drawings and multimedia works on display, and
patients sang, read their poetry and danced. This was
one of the first performances by Dance Unlimited, a
special-needs dance class which was started in 2013
by physical therapist Kellie Lightfoot. The class is a
great opportunity for kids who may be unable to
participate in a traditional dance class, while also
providing them a different type of physical therapy.
Nicole Robinson from the Wick Poetry Center at
Kent State University (KSU) came on board to offer
creative writing workshops in 2013. She helps patients,
families and staff write poetry and prose about their
emotions and experiences. Several of our patients’
poems have been featured in “Traveling Stanzas,” an
outreach program through the Wick Poetry Center and
KSU School of Visual Communication Design. Selected
poems are displayed on northeast Ohio buses and
transit systems, and also in the Poetry Park on KSU’s
main campus.
Dance Unlimited
12 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
Ohio Home Choice Program
Since spring 2012, the Haslinger Center has been a
transition coordination site for the Ohio Home Choice
Program. This federal program is focused on getting
individuals out of institutional settings to live at home.
The project also focuses on redesigning the system by
balancing community-based options with institutional
ones. This has been a major resource for babies and
children who have been in the hospital 90 days or more
and who need extra services and support to go home.
In less than three years, the Haslinger Center has served
95 families through this program, bringing in just under
$1 million in available resources for families, as well as
$450,000 in revenue to our center. The program will
continue through September 30, 2016, with possible
expansion to 2020.
Grief and Bereavement Services
Individual and Family Counseling is available for
bereaved family members as needed.
Good Mourning Grief Support Series helps children
and their parents understand and deal with grief resulting
from the death of a loved one.
Hope for Grandparents Grief Support Series offers
support for grandparents who have experienced the
pain of losing a grandchild.
Precious Parents is a pregnancy and infant loss support
group run by parents for parents.
Supporting Super Kids is a support group for children
ages 5-16 who have a family member coping with a
chronic illness.
Energized Toward Healing Grief Support Series is
co-facilitated by professionals and parents to provide
information and support to bereaved parents.
The Compassionate Friends, Akron Area is led by parent
facilitators and offers friendship, understanding and hope
to bereaved families.
Family-centered, follow-up phone calls are made to
bereaved families by palliative care volunteers and staff.
Support for Your Journey – A Resource Guide for
Grieving Families provides information on a host of
available community resources and other services to help
families through the grieving process.
Annual Remembrance Service at the Holidays is a
non-denominational service featuring speakers, music, a
candle-lighting ceremony and a slide show of the children
who have been lost. It’s a huge event, which would not
be possible without hundreds of volunteers and hospital
staff members.
Funeral Assistance Program provides up to $500 for
funeral-related expenses to needy families whose children
have died at Akron Children’s. This provides for the basic
cost of cremation and a service, or can help defray the
cost of burial or other funeral expenses. This is an ongoing
need and something we feel is important to offer to families.
If you’re interested in supporting or raising funds for our
Funeral Assistance Program, please contact our office.
For more information about these programs,
please visit akronchildrens.org/palliativecare or
contact the Haslinger Center at 330-543-3343.
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 13
> Volunteers
Our dedicated volunteers donate hundreds of hours
to help our patients and families. With their help,
we are able to offer many additional programs and
services that greatly benefit our patients and families.
These include: home visits and phone calls to patient
families; the creation of beautiful handmade cards to
send to patients on their birthdays and for bereaved
families on special days; professionally taken portraits
for patient families provided through Flashes of Hope,
as well as drawings of children for bereaved families,
provided through Faces of Angels; and assistance with
many other programs and special events. Our volunteers
also help with events and workshops in the Expressive
Therapy Center and provide clerical support.
If you are interested in becoming a volunteer, please
contact us at 330-543-3343 and let us know how
you’d like to get involved.
A Heartfelt Thank You
to Our Volunteers
Sandy Adkins
Wendy Avery
Olivia Avsec
Lindsey Bailey
Isabella Bartholomew
Linda Bowlin
Janae Brookhart
Jacquelyn Brown
Anne Bruno
Katie Butler
Connie Buzek
Franklin Choate
Cierra Clark
Bailey Cole
Matt Dailey
Alex Davis
Ginny Deighton
Tom Deighton
Lauren Delsanter
Julie Dewees
Amanda Dreher
Erin Dremann
Fred Linxweiler
Kelly Livesay
Sue Locke
Nancy Ludwick
Yin Luo
Mary Lyons
Paula Malone
Rebecca Marley
Marcy Mauric
Emily McGuirk
Emily McKenna
Stephen McNulty
Sandra Montgomery
Joan Oldham
Mary Beth Palmer
Amrita Pandey
Elizabeth Parker
Caroline Parry
Debbie Patterson
Lorri Pewton
Jody Pittner
Tess Powers
Is anything possible when we share our time?
Community Leadership Team
The Community Leadership Team (formerly the
Community Advisory Board) began in 2003. Its
members serve as liaisons to the community and
promote the center’s services.
The team has continued the Holiday Elves program,
which provides holiday wreaths, trees and other treats
to palliative care families. Many members also serve as
volunteers in the Haslinger Center and the Expressive
Therapy Center and assist with events and fundraisers.
Community Leadership Team Members
Kathy Bearer
Barbara Brown
Shelly Brown
Eileen Burg
Catherine Clark
Paula Dutton
Andy Lamb
Meg Lamb, Chair
Sue Locke
Jeannine Marks
Jody Miller-Konstand
Jaynee Nance
Marie Parker
Vicki Parisi
Elizabeth Sheeler
Katie Durr
Allison Ewing
Ed Fabian
Laurie Fenton
Jean Frisone
Heather Gerrets
Maggie Grant
Stephanie Gross
Robin Habunek
Cheryl Hatcher
Jackson Henderstrom
Sara Holm
Tami Hood
Nora Houser
Rhonda Hughes
Katie Humbel
Michele Jackson
Jennifer Janisko
Tiffany Jett
Brandon Johnson
Barbie Jones
Patti Kelleher
Chante Kightlinger
Karen King
Terrie Kisha
Jean Kopp
T.J. Lewis
Becky Lightfoot
Ellen Lintner
14 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
Maryanne Rechner
Ann Ries
Ellen Roose
Joe Rose
Kelly Rose
Donna Ross
Leslie Saralino
Marianne Schauer
Michelle Sergi
Kaitlyn Shapphard
Nicole Shreffler
Sydney Sien
Rhonda Spada
Peg Stalter
Carol Stanley
Bridget Swihart
Linda Szeles
Patrick Szeles
Mary Thompson
Jamie Tople
Nicole Valentino
Karen Vincent
Terry Wells
Alicia Weston
Penny White
Sataire Williams
Holly Zazo
Barbara Ziegler
Rachel Ziemba
> Meet Marie Parker
The death of a child is one of the most difficult experiences
a parent can face.
For Marie Parker, the pain of losing her first child more
than 25 years ago inspired her to get involved with the
Haslinger Center, both as a volunteer and member of the
Community Leadership Team.
In 1988, Marie’s infant daughter, Hillary, was born
prematurely and admitted to Akron Children’s Neonatal
Intensive Care Unit. After a short stay, Hillary was able
to go home with her parents, where she died at age
3 months.
Many years later, Marie, a member of the Akron
Children’s Women’s Board, heard about Dr. Sarah
Friebert and wanted to learn more about the palliative
care program she was starting.
“When Hillary was born, pediatric palliative care was a
new concept that was not yet implemented in children’s
hospitals,” Marie said. “Had it been available, it would
have been really helpful for us.”
Through her involvement with the Women’s Board,
Marie has volunteered in numerous capacities at Akron
Children’s, including working in the Gift Shop and
assisting with the Charity Ball, tree-lighting ceremony
and in-school programs for the Akron Public Schools.
Ten years ago, she also became a volunteer in the
Haslinger Center, where she’s assisted with tasks
ranging from weekly clerical support to making phone
calls to bereaved families.
“Through our card ministry, I started a group that
makes handmade cards for patients and bereaved
families,” said Marie.
This past holiday season, her group of more than
50 women created 1,175 cards.
She’s also helped coordinate home visits made to
patient families by palliative care volunteers and
Marie Parker
assisted with the annual memorial service. She’s a
past secretary of the Community Leadership Team.
“Dr. Friebert and her staff are an incredible group who
have very difficult jobs,” said Marie. “I’m grateful to be
able to support them in the work they do. It’s really an
honor to work with them.”
She also finds it rewarding to get to know the patients
and their families and help them during a difficult time,
even if it’s just in some small way.
As an advocate for the Haslinger Center, Marie has also
helped recruit others to become volunteers.
“It doesn’t take much to convince them to get involved –
once they understand the opportunities that are available
and all the ways they can help,” she said.
Marie lives in Bath Township with her husband, Michael,
a plastic and reconstructive surgeon. Their family
includes twin daughters, Brittany and Taylor, age 25,
and son Colin, age 23. A former nurse, Marie also
works part-time in a local boutique.
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 15
> Volunteers
> Meet Debbie Patterson
As a long-time volunteer at Akron Children’s, Debbie
Patterson started out as a family representative. In this
role, she checked in with patients and families to see
how their hospital stay was going and if they
needed anything.
“I would pass along any concerns to the appropriate
staff and provide them with something to do to pass
the time,” said Debbie. “I also gave Pinkie Puppets to
the kids and provided any supplies families might need,
such as linens and sundry items.”
When she needed greater flexibility due to her work
schedule, the volunteer office suggested she become
a volunteer in the Haslinger Center.
Since 2008, she’s been coming to the office every
week where she assists with clerical tasks such
as sending faxes, filing and making folders for
new patients. A typical shift is 3-1/2 to 4 hours.
“Because I have arthritis, I’m able to assist with
more sedentary tasks,” said Debbie.
Using volunteers to provide clerical support allows
the Haslinger Center to save resources and allocate
more funds to programs and services that directly
benefit patients.
Having an extra hand in the office is also a huge help,
especially as the number of patients continues to grow.
For Debbie, it provides a nice break to her weekly
routine, which includes working part-time as a sales
associate with a major retailer.
“As a volunteer, you get to see the amazing work the
palliative care staff does every day,” she said. “Getting
to know them and seeing first-hand how they are
making a difference in the lives of their patients is
very gratifying.”
Debbie Patterson
Debbie also enjoys being able to support these efforts
by pitching in with day-to-day tasks that help keep the
office running smoothly.
“For those who are considering becoming a palliative
care volunteer, I encourage them to try it,” she said.
“The staff has a difficult job that can be emotionally
draining, but knowing that you’re helping them make
a difference is very rewarding.”
Debbie lives in Cuyahoga Falls with her husband, Pat.
When she’s not working or volunteering, she enjoys
taking walks and caring for the home she and Pat share.
16 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
> Educational Activities
>Can we lead the way in palliative care education?
Impacting the delivery of pediatric palliative care
Schwartz Center Rounds
In 2013, we started monthly Schwartz Center
Rounds at Akron Children’s Hospital. A national
program of the Schwartz Center for Compassionate
Health Care, Schwartz Center Rounds offer a forum
for clinical staff to explore the emotional and
psychosocial dimensions of care. The mission of
the Schwartz Center is to strengthen the relationship
between patients and their care providers and to
celebrate and support caregivers who make the
unbearable bearable. By making this program
available at Akron Children’s, we join over 350
hospitals in more than 40 states who offer this
experience to caregivers.
Pediatric Palliative Care Fellowship
Training Program
Our Pediatric Palliative Care Fellowship Training
Program received certification from the Accreditation
Council for Graduate Medical Education (ACGME)
in 2009, and was reaccredited for 10 years after a
site visit in 2012. All of our graduated fellows who
have taken the board exam in Hospice and Palliative
Medicine have passed and are currently practicing
in the field. Palliative care fellows trained in 2013
include: Todd Dalberg, DO; Marina Lazbin, MD and
Mona Raed, MD.
An interdisciplinary team from across the hospital
forms the steering committee that guides the rounds.
Cases are presented by hospital staff members and
moderated by a trained facilitator. Sessions started
in September of 2013 and topics included, “An
Unexpected End to a Difficult Journey,” “You’re
Back Again? Dealing with the Challenge of Self-Inflicted
Suffering” and “Personal and Family Tragedy: Dealing
with Overwhelming Violence.” The purpose is to
allow caregivers to reflect and support one another.
Each presentation has had an average of 150
participants, including many different disciplines
involved in patient care, demonstrating the need
for this type of programming. Learn more at
theschwartzcenter.org.
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 17
> Educational Activities
Medical Education
Scholarly Publications/Presentations
The Haslinger Center continues to offer elective
rotations for medical students from Northeast Ohio
Medical University and for Akron Children’s Hospital
residents, as well as residents and students from
institutions that do not have well-developed pediatric
palliative care programs.
Publications
We host nursing and social work students, physicians
and other healthcare professionals who want to learn more about pediatric palliative care. Learners participate
in consultations and family meetings, and receive
overall exposure to the goals, philosophies and practice
of pediatric palliative care.
Feudtner C, Friebert S, Jewell J. Pediatric palliative
care and hospice care commitments, guidelines and
recommendations. American Academy of Pediatrics
Section on Hospice and Palliative Medicine and
Committee on Hospital Care. Pediatrics 2013; 132(5);
966-72. Originally published online October 28, 2013.
The monthly Pediatric Palliative Care Curriculum series
continues to be well-received by Akron Children’s staff
and the community, and is a required lecture for the
hospital’s residents. Topics include communication,
treatment of pain and other symptoms, boundary issues,
ethics, spirituality, grief and bereavement. Presenters
include palliative care and other hospital staff, community
members, patients and parents. Continuing education
credit is offered to nurses, physicians, psychologists and
social workers, with a certificate of completion offered
for other allied health professionals.
The quarterly Lunch ‘N Learn Series continues to be
well-attended by community agencies and hospice
organizations. Many of these organizations do not
frequently see children with life-threatening or chronic
conditions, so our education can help them provide
better care for our patients in their own communities.
For the most up-to-date schedule and topics for these
educational programs, check our event listing at
akronchildrens.org/palliativecare.
Feudtner C, Womer J, Augustin R, Remke S, Wolfe J,
Friebert S, Weissman D. Pediatric palliative care programs
in children’s hospitals: a cross-sectional national survey.
Pediatrics 2013; 132(6):1063-70.
Roth M, Davies D, Friebert S, Wang D, Kim M,
Zelcer S. Attitudes and practices of pediatric oncologists
regarding methadone use in the treatment of cancerrelated pain: results of a North American survey. Journal
of Pediatric Hematology/Oncology 2013; 35(2):103-7.
Wiener L, Pao M, Battles H, Zadeh S, Patenaude AF,
Madan-Swain A, Friebert S, Elkin D. Socio-environmental
factors associated with lone parenting chronically ill
children. Children’s Health Care 2013; 42:264-80.
Presentations
Sarah Friebert
• Annual Pediatric Update for the Practicing Physician,
Akron Children’s Hospital, Akron, OH; April 2013;
Co-panelists: John McBride, MD; P. Cooper White;
MD; Steve Cosby, MD
-
The Intersection of Health Care Reform and
Primary Care: The Future is Coming
• ProMedica Cancer Institute 2013 Fall Cancer
Symposium, Toledo, OH; October 2013
-
Pediatric Palliative Care
• Center to Advance Palliative Care National Seminar:
Palliative Care at the Forefront: Innovation and
Opportunity, Dallas, TX; November 2013
-
Integrating Pediatric Palliative Care into a
Patient-Centered Medical Home (Plenary)
-
Barking Up the Money Tree? Developing a
Financial Case for Pediatric Palliative Care
-
Pediatric Palliative Care: Reports from the Field
18 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
Cassandra Hirsh
• Rounding with the Stars Presentation at American
Academy of Hospice and Palliative Medicine (AAHPM)
National Conference, New Orleans, LA; March 2013
-
Portraits of Life, Love and Legacy Through
Pediatric Palliative Care • Guest lecturer at the University of Akron, Akron, OH;
April 2013
-
Acute and Chronic Pain Management
• Hospice and Palliative Care Pediatric Summit,
Flatwoods, WV; June 2013
-
The Fundamentals of Effective Communication
-
Walking Through the Valley
Catherine Kelly-Langen
• Schedule II Pharmacology Course, Akron Children’s Hospital, Akron, OH; February 2013
-
Acute & Chronic Pain Management for
Prescribing APNs
• Current Topics in Pediatric Pain Medicine,
Akron Children’s Hospital, Akron, OH; September
2013
-
Pediatric Pain Assessment and Management
Molly Kohut
• International Expressive Arts Therapy Association Conference, Berkley, CA; March 2013
-
Art-Centered Healing Approach to the Pediatric
Medical Hospital Setting
• Workshop at Northeast Ohio Medical University, Rootstown, OH; March 2013
-
Exploring Art Therapy in Complex Populations
• American Art Therapy Association Conference,
Seattle, WA; July 2013
-
Creating a Healing Community: Art Therapy
Support Group for Pediatric Hospital Employees
-
Introducing Tablet Technology and Art-based
Applications to Art Therapy Practice (co-presenter
E. Dennis)
• Buckeye Art Therapy Association Conference, Columbus, OH; September 2013
-
Creating a Healing Community: Art Therapy
Support Group for Pediatric Hospital Employees
• Great Lakes Association of Child Life Professionals Annual Conference, Cleveland, OH; October 2013
-
Working Hand-in-Hand to Serve Children and
Their Families: Pediatric Palliative Care and Child
Life Specialists
• Walsh Nursing School, Canton, OH; November 2013
-
Pediatric Palliative Care: An Overview
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 19
> Meet Jack
Sandi and Jack Cleavenger
In the spring of 2013, Sandi and David Cleavenger of
Akron anxiously awaited the birth of their first child.
“Up to that point, there had been no indication that
anything was wrong,” said Sandi.
During a routine doctor’s visit, Sandi had an ultrasound to
make sure her child was developing normally. Due to the
baby’s position, the technician was unable to get a clear
image of the heart.
At 2 days old, Jack was in congestive heart failure. He
would spend the next 30 days in the neonatal intensive
care unit (NICU) at Summa Akron City Hospital, then
another 30 days in Akron Children’s NICU.
“We’ll get it next time,” the technician assured.
The Cleavengers knew he would need surgery to repair
and reconstruct the valves in his heart once he was a little
older and stronger. Once again, Jack had other plans.
However, there wasn’t to be a next time.
Instead, Jack Cleavenger arrived prematurely a few weeks
later on April 13. Soon after, his parents learned that he
did indeed have a problem with his heart. Jack was also
born with Down syndrome. The couple was shocked by
the news.
After just 6 days at home, Jack was back at Children’s to
have heart surgery, followed by a month-long stay in the
Pediatric Intensive Care Unit (PICU). He was 3 months old.
This was an incredibly stressful time for the Cleavengers.
20 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
“The same day that Jack was put on a ventilator in the
PICU, I had to resign from my job,” said Sandi, who
worked as a nurse at a local hospital. She did not qualify
for a family medical leave, which would have assured her
a leave of absence during her son’s recovery.
Easing the burden
It was during Jack’s stay in our NICU that Sandi and
David were first introduced to the palliative care team.
“I’ve always wanted to work at Children’s,” said Sandi.
“I love the environment and the philosophy of providing
family-centered care.”
During Sandi’s shift, Jack, who’s now 19 months old,
attends day care at Summit County Developmental
Disabilities Board. A nurse is available there since Jack
continues to be tube fed through his stomach for a
condition known as delayed gastric emptying.
“I immediately thought of end-of-life care,” said Sandi.
Today, he’s a sweet, happy toddler who loves to play.
He’s also learning sign language to help him communicate,
and enhance his ability to learn and develop.
However, Marlene Hardy-Gomez, a nurse practitioner in
the Haslinger Center, explained that one of the roles of
palliative care is to help ease the burden for families
facing a child’s serious or chronic illness.
“When Jack was born, I was worried about having a child
with Down syndrome,” said Sandi. “But if I would have
known then what I know now, I would have felt very
differently. He has brought us so much joy.”
The center’s staff has helped the Cleavengers by answering
medical questions regarding Jack’s diagnosis, coordinating
his care with numerous specialists and home health nursing
agencies, and providing financial assistance.
A few months before Jack was born, the Cleavengers
bought a new home, so the loss of Sandi’s income made
it difficult to pay all their bills. Through the Haslinger
Center, they were referred to the River of Life Fund, which
provided assistance with their mortgage payment, so they
were able to keep their home.
They also received vouchers for parking and gift cards
to local restaurants through the Courage for Carina Gift
Card Fund.
“Being able to go out to dinner once in a while was
a nice break and gave us some sense of normalcy,”
said Sandi.
New beginnings
Once Jack’s heart was repaired and the family settled into
a new routine at home, Sandi was ready to return to work.
A nurse from Children’s Home Care Group, who provided
care to Jack, told her about a job opening at Children’s.
Sandi got the job as a home health nurse and started
the week of Jack’s first birthday.
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 21
> Financial Support
>Does every little bit really count?
Palliative care funds go a long way to support our patient familes
The following funds support
the Haslinger Family Pediatric
Palliative Care Center. The funds
allow donors to direct how their
money is used. Your gift to any
of these funds will go a long way
toward enhancing the lives of
children and families. If you are
interested in making a donation,
please use the enclosed postagepaid envelope and indicate if there
is a specific fund you would like
to support, or contact the Akron
Children’s Hospital Foundation at
330-543-8340. Thank you!
The Palliative Care General Fund
provides financial support for the
immediate needs of the center,
such as equipment and supplies
for patient use, educational needs,
or other expenses related to the
operation of the center.
The Cushwa Family Pediatric
Palliative Care Fund was
established by Mr. and Mrs. William
Cushwa to support program staff
who provide unreimbursed care,
such as our psychologist, dietitian,
child life specialist and massage
therapist.
The Pediatric Palliative Care Gift
Card Fund was recently renamed
the Courage for Carina Gift Card
Fund in honor of Carina Britz, a
palliative care patient who died in
2009. It was established by
Mr. and Mrs. William Cushwa
to purchase gift cards for patients
to buy items such as groceries,
clothing, gasoline and other
necessities.
The Austin Michael Davis
Memorial Endowment Fund was
created by donations received in
memory of Austin Michael Davis
who died in 1992 at age 2-1/2
from Hemolytic Uremic Syndrome.
It funds parent and family support
services.
The River of Life Fund assists
caregivers by relieving financial
burdens when other resources
have been exhausted or are
unavailable, particularly for
housing, utilities, groceries,
transportation, medical and
burial expenses.
Sarah Elizabeth Friebert, MD
Leadership Chair in Pediatric
Palliative Care Fund supports
the director of the Haslinger Center
and was started by a gift from the
Sutkowski Foundation. This is the
first-ever pediatric palliative care
endowed chair position in the
country.
The Pediatric Palliative Care
Fellowship Fund supports programs
and activities to enhance the
education of pediatric palliative
care fellows trained at Akron
Children’s Hospital.
22 AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT
The Colin James Carr Fund
supports community bereavement
services and programs at Akron
Children’s Hospital. It was
established in 2001 by Adam
and Valerie Carr in memory of
their son.
Lauren Ellen Gartner, Forever
in Our Hearts, Expressive
Therapy Fund supports the
Expressive Therapy Center at
Akron Children’s Hospital. The
center provides space where
patients and family members can
participate in music, art, dance,
photography and other forms of
creative expression.
The Stan and Roberta Marks
Fund for Music Therapy supports
staffing, supplies, instruments,
programming, education and other
designated projects needed for the
music therapy program.
The Manny Rodriguez Patient
Safety Education Fund supports
education and training of staff and
families related to patient safety,
as well as the importance of
pediatric palliative care in the lives
of children and families.
> Donor Angels
January 1, 2013 through December 31, 2013
Akron Children’s Hospital Employee
Foundation Council
Akron Community Foundation
Mr. and Mrs. James Albertson
Mr. and Mrs. Michael D. Allega
Stephanie Allen and Family
Anthony Funeral Homes
Audio Video Interiors
Dr. Kimberly N. Baker
Bath School 4th Graders
Dr. and Mrs. Anthony P. Bartholomew
Mr. and Mrs. Barth Bonniwell
Mrs. Eileen E. Burg
Mr. and Mrs. Adam E. Carr
Ms. Linda J. Chasteen
Mr. James Clark
Community Hall Foundation, Inc.
Ms. Chantel Conrad
Courage for Carina & Company
Covelli Enterprises, Inc.
Mr. and Mrs. Fred Crewse
Mr. and Mrs. Thomas J. Deighton
Ms. Jennifer Demoss
East Woods School 5th Graders
Ms. Carol A. Eckroate
Emerson Process Management
Mr. and Mrs. Ed Fabian
Ms. Beth Farnstrom, RN
Five Guys Burgers and Fries
Ms. Sarah Forrer
Dr. Sarah E. Friebert
Mr. and Mrs. Stuart Friebert
Friends of Akron Children’s Hospital
Gap Foundation Gift Match Program
Ms. Nancy X. Gartner
Ms. Joyce K. Hamaker
Ms. Marlene E. Hardy-Gomez, CNP
Ms. Jane Harrison
Harry K. Fox and Emma R. Fox
Charitable Foundation
Haslinger Family Foundation
Ms. Molly Holley
Mr. and Mrs. Bruce Hollingsworth
Mr. and Mrs. Adam A. Holtz
Ms. Tami Hood
Mr. and Mrs. Joseph W. Hovatter
Mrs. Susan M. Howson, CNS
Mr. and Mrs. Thomas J. Hruby
Ms. Connie W. Humble and Mr. Bill Delagrange
Mr. Jordan Hunt and Dr. Amber Hunt
Jean P. Wade Foundation
Ms. Tiffany Jett
Mr. and Mrs. Edward K. Jones
Mrs. Patti Kelleher
Mr. Jeffery L. Klebs
Ms. Rebecca Klein
Ms. Molly K. Kohut
Kovatch Castings
Mr. and Mrs. Douglas Krapf
Mr. and Mrs. Lester D. Kurtz
Mr. and Mrs. Thomas Lamb
Ms. Shirley Lawrence
Ms. Audrey M. Lindsey
Ms. Michelle Lisco
Lubrizol Advanced Materials
Mr. and Mrs. Fred J. Luecke
Mellion Orthodontics
Ms. Laurie Mellion
Mr. and Mrs. Leo McGuinness
Ms. Emily McKenna
Mr. and Mrs. Thomas McKenna
Mrs. Josephine A. Moran
Ms. Kristine R. Moran
Ms. Carol Morano
Ms. Stephanie Morley
Mr. and Mrs. Paul E. Neidert
Mrs. Julie O’Neil
Dr. Maura K. O’Shea and Mr. Eugene S. Moritz
Mr. and Mrs. Gordon P. Owens
Palliative Care Team
Ms. Mary Beth Palmer
Ms. Elizabeth R. Parker
Dr. and Mrs. Michael G. Parker
Mr. and Mrs. Anthony N. Pendolino, Jr.
Ms. Molly J. Pirie
Mr. Thomas B. Plazo
Ms. Beth Z. Potere
Mr. and Mrs. Jack Price
Mr. Thomas D. Rich
Ms. Donna M. Ruther
Ms. Shelley Sereni
Ms. Evelyn I. Sertell
Mr. and Mrs. Robert A. Service
Ms. Kelly Shackelford
Mr. and Mrs. Timothy D. Sheeler
Mr. Richard R. Slocum and Mrs. Eva
Katherine Bertsch
Mr. and Mrs. Karl Slosberg
Mr. and Mrs. Paul Steurer
Ms. Sandra K. Stewart
The Compassionate Friends
The Cookie Jar
Timken Company Charitable and
Educational Fund, Inc.
Tribune Chronicle
Mr. and Mrs. Wayne W. Wax
Ms. Danielle Westover
Mr. and Mrs. Roy Whitt
William’s Legacy Foundation
Wish You Were Here AKA Eroc Music, Inc.
Ms. Randi Wolfe
Women’s Board of Akron Children’s Hospital
Mr. and Mrs. Greg Wunderle
Mr. and Mrs. John Yehl
Yoga Lounge, LLC
Mr. and Mrs. Timothy L. Young
The Haslinger Family’s Generous Support
The Haslinger Family Pediatric Palliative Care Center Fund was created in 2002 with a generous $4 million
commitment in support of the center’s operations. In 2009, the Haslinger family generously pledged to
continue their support of the Haslinger Center and an endowed chair in Pediatric Palliative Care through a
matching grant. A challenge was issued: to raise $200,000 annually for five years, with each dollar matched
by the Haslingers, up to $1 million.
Sandra Haslinger
The challenge was completed in 2013, with a total of $2 million donated to establish the endowed chair.
The Haslinger family donated $1 million and the remainder was raised from other donors in the community.
AKRON CHILDREN’S HOSPITAL | 2013 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER REPORT 23
Sandi and Jack Cleavenger pictured on front cover. >