The primary clinical experience will be with the Pediatric Advanced Care Team. In an effort to provide exposure to a diverse range of both pediatric and adult patients, the fellow will have additional core rotations within The Children's Hospital of Philadelphia and the Hospital of the University of Pennsylvania , our neighboring adult hospital. Finally, the fellow will perform a Capstone project relevant to their specific interests in pediatric palliative care.
PACT, the clinical arm of the PPPC, is an interdisciplinary team that includes physicians from the Divisions of General Pediatrics, Oncology, Neonatology, and Pulmonology in the Department of Pediatrics; physicians from the Department of Anesthesiology and Critical Care Medicine; and PPPC staff from nursing, social work, chaplaincy, child-life, and bereavement support. The service offers consultation services for patients and families at the request of the patient, the family, or any member of the healthcare team. The goal of care is to improve end-of-life care for children; help families make difficult decisions; support a family's values and preferences; treat and eliminate symptoms common at the end of life; provide emotional and spiritual support to the child, family and healthcare team; and arrange for home care and hospice services. Following initial consultation, the children and families are offered ongoing, longitudinal involvement from PACT. In addition to the direct patient/family involvement, PACT works with other healthcare providers and hospice agencies to build a supportive network of care spanning the child's life and death.
The role of the fellow will transition quickly from participant observer to primary physician contact, always with the direct supervision and guidance of the attending PACT physician. Specifically, this clinical experience involves daily clinical rounds, bi-weekly interdisciplinary team rounds, phone consultations throughout the week, and home visits when appropriate. All cases are supervised, reviewed and discussed with the fellow on a daily basis.
The Integrated Care Service (ICS) is an acute inpatient pediatric unit for children with complex, life-threatening medical conditions that require the coordinated care of many specialties and disciplines. The core ICS healthcare team consists of an attending physician from the Division of General Pediatrics, five pediatrics residents, a nurse practitioner, a social worker, a case manager, and floor nurses, all working with the patient and family to optimize the patient's health status and quality of life. The responsibilities and experiences of the team typically involve diagnostic evaluation within the context of established chronic illness, the development and implementation of comprehensive care plans within the context of family and home capacity, and the assessment of treatment within the context of patient comfort and quality of life.
The fellow will provide patient care, family counseling, and residency training under the direct supervision of the ICS attending physician. The fellow will participate in daily interdisciplinary bedside rounds with the full ICS team and care coordination rounds with the social worker, nurse educator, and case manager.
Wissahickon Hospice is administered through Penn Home Care and Hospice Services, which is an affiliate of the University of Pennsylvania Health System (UPHS). It is staffed by UPHS clinicians and provides interdisciplinary HPM services for adult patients in home, hospital, rehabilitation, and chronic care settings. The IDT includes physicians, social workers, nurse case managers, nurse practitioners, and chaplains focused on symptom management, guidance in medical and legal decisions, skilled nursing, bereavement support, and spiritual care.
The Wissahickon Hospice rotation consists of four two-week blocks. In the first block, the fellow spends two weeks providing hospice care in the home hospice setting supervised by a family medicine physician in collaboration with the nurse case manager, chaplain, and psychosocial clinician. In the second block, the fellow provides care on a dedicated inpatient hospice service for adults with end-of-life conditions supervised by the attending physician and in collaboration with a nurse case manager, chaplain, and psychosocial clinician. In the third block, the fellow provides hospice consultation in a nursing home, rehabilitation and chronic care setting under the supervision of a geriatrics physician and in collaboration with a nurse case manager and psychosocial clinician.. In the last block, the fellow spends two weeks providing multi-site (e.g., hospital, nursing home, patient home) palliative care consultation to patients still pursuing life-sustaining therapies. Each week, the fellow participates in the IDT coordination meeting specific to the clinical block.
During time spent on PACT consult service, the fellow works directly with social work, bereavement, child life, art therapy, chaplaincy, and family faculty of PACT to gain specific experiences of the IDT that make up a comprehensive PPC model. This rotation includes direct patient care and informal discussions of the goals of the patient interactions.
The social worker works with healthcare workers and school systems in coordinating psychosocial services, providing psychosocial and emotional support for patients, families, and healthcare workers working with dying children.
The bereavement coordinator provides educational services to families and staff and organizes a memorial service and candle lighting ceremony. Also, in collaboration with the social worker, they provide a six-week bereavement support group and coping workshop that the fellow attends.
The child life specialist and art therapist provide social, emotional, and developmental support to children and families by utilizing developmentally appropriate play, art, education, counseling, and legacy building activities while creating opportunities for memory making.
The chaplain provides pastoral services for families from a diverse group of spiritual beliefs and religions, including spiritual interventions, support, prayer, and sacraments. The chaplain assists with ethics consultations, coordinates spiritual care with communities of faith, and arranges any special spiritual needs of a patient and family.
The family faculty supports and creates programming for families, teaches staff about the family experience, develops strategies for communication and care, and brings a family perspective to committees. As an advisor to PACT, they collaborate in patient care and strategic planning.
Through the Partners Program, a collaborative effort with hospice agencies in the greater Delaware Valley and the PPPC directed at providing support, improving communication, and educating caregivers in caring for dying children, the fellow works with hospice agencies and nurses that provide end-of-life care in the child's home environment.
This experience occurs while the fellow is rotating with the PACT team, though the fellow works directly with hospice agencies and IDT's not directly affiliated with the PACT team. Primarily, this experience is observational with the fellow learning, through direct patient care, the issues that face a family in non-acute environments with limited resources. While working primarily with the hospice nurse, the fellow interacts with the hospice's IDT as they interact with each patient. When available, the fellow attends the hospice's IDT rounds.
The Pain Team is a multidisciplinary team that offers specialized evaluation and treatment of acute and chronic pain. The team sees about 1500 consults per year, including post-operative pain, chronic pain conditions, acute non-surgical pain, and opioid/benzo dependence. The fellow will gain experience in the use of patient controlled analgesia, continuous epidural analgesia, peripheral nerve blocks, intrathecal morphine, and oral analgesic therapy. The fellow will not be asked to perform procedures but will learn the methods used, how they work, what medications and doses are employed, and any related complications.
Though there is an outpatient component available, the majority of this clinical experience will be inpatient. While on this service, the fellow will be the primary contact for all consultations and evaluations. Supervision will be provided by the Pain Team anesthesiologist.
The primary ambulatory experience comes through Oncology/Palliative Care Clinic rotation. This clinic—geared to evaluating symptom management and discussions of decision making over the course of the child's illness—is organized through the division of oncology, supervised by the director of the PPPC (an oncologist), and includes an IDT of nurses, social workers, and child life therapists. While the clinic primarily sees children with oncologic diagnoses, other patients with life-threatening diseases are seen as well (active patients involved with PACT).
The fellow participates in the clinic on a weekly basis while on the PACT rotation. The goal is to enhance the fellow's ability to follow patients longitudinally through the course of their illnesses, provide education on some disease processes common to hospice and palliative medicine, and expose the fellow to how an interdisciplinary team approaches care in an ambulatory setting.
In lieu of a capstone project, the fellow will be allowed to pursue a limited research project in the identified area of interest. Mentorship will be provided to insure the project scope is reasonable for the time allotted.
Children with life-limiting illness are cared for by many subspecialty services. In an effort to provide exposure to the natural course of many of these illnesses, as well as knowledge on some of the common therapies for prolonging life and minimizing symptoms, an experience will be offered as a collection of sub-specialty clinics. The content of each will be specific to that clinic and the disease processes seen by them. All will focus on the longitudinal care and symptom management of diseases common to the specialty, as well as the psychosocial stressors common to the patient base.
Given the sub-specialty experience needed to care for these patients, the fellow's role will primarily be observational. However, the fellow will provide direct patient care supervised by the sub-specialty physician.
Understanding the ethical and legal aspects of palliative care is an integral part of understanding how to affectively provide comprehensive palliative care to patients. While the fellow will gain exposure to these issues as they pertain to palliative care throughout the fellowship, the elective will provide a more global experience in the ethical dilemmas common to the care of children in a large pediatric hospital. The elective will include a reading list a discussion about specific cases that cover ethical and legal topics related to palliative care.
This elective is meant to augment the capstone project if the fellow chooses to do a research topic. Due to the nature of research and the difficulty of achieving a meaningful experience in a short period of time, this elective will provide time for the intensive phase of setting up the project. The experience will then continue through the year until the completion of the project. Progress will be supervised by Dr. Feudtner to guarantee a meaningful experience.
In addition to these elective experiences, every effort will be made to set up new electives that accomplish goals consistent with the mission of the fellowship program and address the specific interests of the fellow.
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