Initiative for Pediatric Palliative Care (IPPC): Curriculum

	The Initiative for Pediatric Palliative Care www.ippcweb.org
	IPPC is actively seeking to collaborate with children's hospitals, pediatric units within general hospitals, and hospice or home care settings serving children and families. Beginning in the fall of 2004, a series of regional educational retreats for interdisciplinary teams will be held in which participants will be exposed to the IPPC curriculum and helped to develop the skills and strategies for implementing the curriculum in their home institutions. If your team or institution is interested in receiving more information about these educational opportunities as details become available, please contact us. Several leading hospitals have collaborated with IPPC to develop and implement exemplary quality improvement projects and to pilot test the IPPC curriculum. These are: Children's Hospital of Boston/Dana-Farber Cancer Institute The Children's Hospital of Philadelphia Children's Mercy Hospitals and Clinics Johns Hopkins Children's Center University of California, San Francisco Children's Hospital Vanderbilt University Medical Center Lucile Packard Children's Hospital at Stanford University Medical Center For more information about the IPPC-related activities initiated 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 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: Tammy Kang, MD Medical Director Pediatric Advanced Care Team Clinical Instructor Division of Oncology The Children's Hospital of Philadelphia 4304 Wood Building 34th and Civic Center Blvd Phildelphia, PA 19104 Phone: 267-426-5051 Email: KANG@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. 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. 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. 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 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. 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 Pilot Activities: The Lucile Packard Children's Hospital at Stanford University joined the initiative to serve as an additional field-test site for the IPPC curriculum materials. 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