The Initiative for Pediatric Palliative Care
www.ippcweb.org
Participating Hospitals and Their IPPC Quality Improvement Initiatives
Seven hospitals are developing exemplary quality improvement activities and serving
as fieldtest sites for the IPPC curriculum. These seven are:
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Children's Hospital of Boston/Dana-Farber Cancer Institute
The Children's Hospital of Philadelphia
Children's Hospital and Health Center San Diego
Children's Mercy Hospitals and Clinics
Johns Hopkins Children's Center
University of California, San Francisco Children's Hospital
Vanderbilt University Medical Center
In addition, the Lucile Packard Children's Hospital at Stanford University Medical
Center is serving as an eighth fieldtest site for the curriculum.
For more information about the IPPC-related activities going on at these hospitals,
please see below.
Children's Hospital of Boston/Dana Farber Cancer Institute
Contact:
Joanne Wolfe, MD, MPH
Medical Director, Pediatric Advanced Care Team
Children's Hospital of Boston/Dana-Farber Cancer Institute
Dane 3
44 Binney Street
Boston, MA 02115
Phone: 617-632-5286
Email: joanne_wolfe@dfci.harvard.edu
Janet M. Duncan, MSN, RN
Clinical Educator, Pediatric Advanced Care Team
Children's Boston Hospital of Boston and Dana-Farber Cancer Institute
7 West
300 Longwood Avenue
Boston, MA 02115
Phone: 617-355-5231
Email: janet.duncan@tch.harvard.edu
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The Initiative for Pediatric Palliative Care
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Quality Improvement Initiative:
The Pediatric Advanced Care Team is a palliative care service for children with
advanced illnesses at Children's Hospital of Boston and the Dana-Farber Cancer
Institute. Established in 1997, this service is one of the first of its kind in the United
States. The primary goal of our IPPC project is to increase utilization of the Pediatric
Advanced Care Team (PACT) in three target services: neurology, pulmonology and the
CCS (Coordinated Care Service—for children with genetic disorders and complex
medical problems). Key "change agents" from selected services have been invited to
become active members of the PACT. Prospective data collection to assess impact will
include: attendance at monthly PACT educational meetings, number of consults from
target services, and needs of patients, families and consult team. We anticipate the
key success factor will be the degree of endorsement by medical, nursing and social
work leadership.
Children's Hospital of Philadelphia
Contact:
Chris Brown, MS, CCLS
Director, Child Life and Education
The Children's Hospital of Philadelphia
34th Street and Civic Center Boulevard
Philadelphia, PA 19104
Phone: 215-590-2001
Email: brownc@email.chop.edu
Quality Improvement Initiative:
Patients between the ages of 5 and 18 who are receiving bone marrow transplants are
eligible for participation in this quality improvement initiative. A specially trained and
certified art therapist provides six art therapy sessions to support the patient's
involvement in his or her own illness experience and to foster verbal and non-verbal
communication with and among the patient, the family, and the healthcare team.
Concurrently, the patient, primary family caretaker, and members of the healthcare
team are surveyed to measure, (1) the participant's understanding of the patient's
diagnosis, current condition, and treatment outcomes, (2) the participant's beliefs
regarding frequency of communication about the patient's diagnosis, condition, and
treatment outcomes, (3) the participant's comfort level with the discussions about the
patient's diagnosis, condition and treatment outcomes, and (4) the extent to which art
therapy has changed the participant's frequency and comfort in communication about
the patient's diagnosis, condition, and treatment outcomes.
An Initiative of the Center for Applied Ethics and Professional Practice at EDC, Inc.
© 2002 Education Development Center, Inc. All Rights Reserved
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The Initiative for Pediatric Palliative Care
www.ippcweb.org
Children's Hospital and Health Center, San Diego
Contact:
David Sine, MD, RN, BScN
Pediatric Hospitalist/Medical Director, Children's Hospice Program
Pediatrics
Children's Hospital San Diego
3020 Children's Way
MC 5064
San Diego, CA 92123
Phone: 858-966-5841
Email: dsine@chsd.org
Quality Improvement Initiative:
The Children's Program at San Diego Hospice has developed a pilot program on the
Oncology Unit at Children's Hospital San Diego with the intent to; (1) improve health
care providers' knowledge, attitude and comfort with pediatric palliative care, (2)
measure improvements in quality of life of children with life-threatening conditions,
and (3) assess children's and families' feelings about palliative care through taped
interviews. The overall objective of this study is institutional change with a goal of
actively addressing quality of life issues with all children challenged with lifethreatening conditions.
Children's Mercy Hospitals and Clinics
Contact:
Jill Burris Linn, MDiv
Staff Chaplain and Program Director
Pediatric Advanced Comfort Care Team (PACCT) Chaplaincy
The Children's Mercy Hospital
2401 Gillham Road
Kansas City, MO 64108
Phone: 816-234-3000 x7803
Email: jlinn@cmh.edu
Quality Improvement Initiative:
The focus of our IPPC project is the implementation of a clinical pathway being
developed by the Pediatric Advanced Comfort Care Team (PACCT) for the
Gastroenterology (GI) Section. The pathway will direct the care of complex and
terminally ill patients from diagnosis to cure or death. The pathway will be a tool to
provide consistent holistic care, both medical and psychological, and to improve
communication among patients and staff.
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The Initiative for Pediatric Palliative Care
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Pathway effectiveness will be measured by patient and family satisfaction, staff
satisfaction, tracking the number of consultations by the PACCT from the GI section,
measuring lengths of stay in the hospital and intensive care, and tracking the team
meeting content. In addition a values inventory will be used to assess parental beliefs
at program enrollment and again after completion of the education component of the
intervention.
Johns Hopkins Children's Center
Contact:
Cynda H. Rushton, DNSc, RN, FAAN
Harriet Lane Compassionate Care Coordinator
Johns Hopkins Children's Center
2312 Henslowe Drive
Potomac, MD 20854
Phone: 410-414-2223
Email: crushton@son.jhmi.edu
Quality Improvement Initiative:
The goal of the IPPC project at Johns Hopkins Children's Center is to promote
excellence in pediatric palliative care provided to patients and families by focusing on
the staff providing the care. The premise of Harriet Lane Compassionate Care—an
interdisciplinary palliative care team—is that if we can reduce the suffering of
caregivers who care for children with life-threatening conditions, and strengthen their
ability to accommodate grief, they will be better able to provide care for children and
families. We have developed a comprehensive system of support for health care
professionals, including providing information about pediatric palliative care, clinical
support for the interdisciplinary team, emotional support and opportunities to make
meaning in the face of suffering, death and grief. We believe the staff and, in turn,
the patients and families, will benefit greatly from this unique approach to enhancing
family-centered care.
Lucile Packard Children's Hospital at Stanford University
Contact:
Barbara M. Sourkes, PhD
Kriewall-Haehl Director
Pediatric Palliative Care Program
Lucile Packard Children's Hospital at Stanford University
725 Welch Road, Room 2129
Palo Alto, CA 94304
Phone: 650-497-8963
Email: bsourkes@stanford.edu
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© 2002 Education Development Center, Inc. All Rights Reserved
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The Initiative for Pediatric Palliative Care
www.ippcweb.org
Pilot Activities:
The Lucile Packard Children's Hospital at Stanford University has joined the initiative
to serve as an additional eighth field test site for the IPPC curriculum materials.
University of California, San Francisco Children's Hospital
Contact:
Robin Kramer, RN, MS, PNP
Clinical Nurse Specialist
Pediatric Oncology
UCSF Children's Hospital
Box 0106
University of California, San Francisco
San Francisco, CA 94143
Phone: 415 353-2770
Email: robin.kramer@ucsfmedctr.org
Quality Improvement Initiative:
Our overall goal is to develop a pediatric palliative care program at UCSF Children's
Hospital. The cornerstones of the program will be shaped by a comprehensive needs
assessment, which includes a medical record audit of pediatric hospital deaths and
surveys of both staff and parents to better understand their perceptions of end-of-life
care provided in the hospital setting. These data will help us identify strengths and
weaknesses in care, allowing us to target priority areas for improving the overall
quality of care. Our palliative care initiative also includes the development of 12 hours
of core content, which is being used for interdisciplinary staff training.
Vanderbilt University Children's Hospital
Contact:
Brian S. Carter, MD, FAAP
Associate Professor of Pediatrics
Vanderbilt University Medical Center
Gateway Medical Center
1771 Madison Street
Clarksville, TN 37043-3160
Phone: (931) 551-1973/(615) 322-0545
Email: Brian.Carter@mcmail.vanderbilt.edu
Quality Improvement Initiative:
Our local IPPC project, Pediatric Pain and Symptom Management—A First Step Toward
Pediatric Palliative Care at Vanderbilt Children's Hospital, has three goals. The first is
to examine the number of children who die at Vanderbilt Children's Hospital after
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The Initiative for Pediatric Palliative Care
www.ippcweb.org
being hospitalized for more than 24 hours in the NICU, PICU, Oncology Service, and
Cardiology Service, and describe the circumstances and conditions around their death
for the patient, family, and staff as they pertain to patient pain and other symptoms
at the end of life. The second is to improve practitioners' understanding and attention
to the circumstances around child death at Vanderbilt, especially as it pertains to
patient pain and symptom assessment and management. The third goal is to develop a
continuous quality improvement tool to ascertain and track or monitor, in a
prospective sense, how pain and symptom assessment and management are addressed
at the end of life for children.
An Initiative of the Center for Applied Ethics and Professional Practice at EDC, Inc.
© 2002 Education Development Center, Inc. All Rights Reserved
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