Methods
The goal was to create a comprehensive pediatric PC program using only a dedicated PC nurse practitioner (PC/NP) with 25 years of experience as the pediatric hematology/oncology (PHO) clinical nurse specialist/NP at the same facility. The PC/NP would work with already in place professionals in their specific setting to enhance the delivery of PC.
For example, pediatric intensive care unit (PICU) consults were accomplished with the involvement of a unit-dedicated physician assistant (PA), social worker (SW), chaplain, child life specialist (CLS), respiratory therapist (RT), occupational therapist, and dietician as appropriate. After receiving an initial consult request via medical doctor (MD) order, the PC/NP reviews electronic medical record and discusses case and concerns with the PICU MD and/or PA and the health care team. A physical, social, and spiritual assessment is done by the PC/NP, collaboratively with the MD, PA, and SW. A consult note is documented in the electronic medical record and an interdisciplinary team/family conference is arranged as indicated with key care providers and family members. At this time, a plan of care including medical, family, quality of life, and contextual issues are addressed and documented. Follow-up is done weekly by the PC/NP and more frequently as deemed necessary. Of note, this concept using a comprehensive nondedicated team was developed before there was board certification in PC in pediatrics for physicians or nurses. Ultimately, the dedicated PC team was expanded to include 2 PC-trained registered nurses (PC/RN), a part-time medical director, and a part-time CLS with strong psychosocial training. The evolution of the service will be described
Steering Committee
A proposal was developed, and hospital foundation grant funding was secured for a 0.5 full-time equivalent (FTE) position for the PC/NP to identify the hospital's need for formalized PC services. (The NP continued at an additional 0.5 FTE on the PHO service). Recognizing a need for structured education to guide program development, a steering committee (SC) was selected including key individuals from all service areas (PICU, PHO, perinatal [PN], and neonatal intensive care unit [NICU]) who could define specific specialty/unit needs related to PC. The SC was made up of the PC/NP representing nursing; 2 SWs, 1 from PICU and 1 from PHO; a chaplain; and a pediatric oncologist as medical consultant and program advisor. A medical center decision support analyst, fluent in translating clinical activities into financial terms, completed the team. This person provided budget analysis and program direction for the medical center and agreed to be part of the PC SC but was not exclusively dedicated to PC. The mission of the SC was to investigate the specific need for a PC program within different hospital areas and to develop an implementation plan. The SC members attended a Center for Advancement of Palliative Care (CAPC) Leadership program, which is nationally recognized to help programs develop and formalize PC services. Intensive planning sessions were held at this conference and were continued on a biweekly schedule for 3 months. Topics discussed at these meetings were the determination of the target patient population, identification of stakeholders in different clinical areas, and anticipated strengths and weaknesses of the program. Valuable mentoring through CAPC with their pediatric PC specialists continued for the next year, focusing on program development and advising on anticipated and actual pitfalls, which was very much appreciated.
The SC developed a service vision and mission and decided, based on available staffing, that the model for the PC program was to be inpatient consultative. To broadcast the scope of practice and services that would be available through a PC referral, an educational brochure was developed and distributed to staff and referring physicians and was available to patients and families. A physician order was required for all consultations that were then provided by the PC/NP, assuring the MD's acceptance of PC's involvement and providing a conduit for continuity of care upon discharge.
Capturing metrics demonstrating PC program effectiveness and cost avoidance was an important consideration that required the SC to develop databases of metrics to be used in program documentation and expansion (Table 1). The roles of the decision support analyst and the advisory physician well versed in developing hospital programs were extremely helpful in identifying data points useful in furthering the case for PC to hospital administration.
Before initiating the PC service to patient enrollment, presentations were made to all hospital leadership committees including Pediatric Care Lines, Interdisciplinary Practice Councils, Nursing Executive Committee, Medical Executive Committee, and the Ethics Committee. Six months after attending CAPC, the program was opened to patient enrollment. Although it was anticipated that there would be few referrals to the new service within the first year, there were 23 consults requested during the first month and have continued to escalate (Figure). The PC/NP position was moved to hospital operations, funded as 1.0 FTE after the first 6 months. It immediately became obvious that more resources/staff would be needed to serve the vast numbers of potential PC patients in this medical center.
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Figure.
Number of pediatric and perinatal palliative care consults per year.
Education Programs
Health care teams continued to struggle with the definition of PC and had difficulty disassociating beliefs that it was exclusively related to care at time of death and hospice. Staff expressed a lack of understanding of how concurrent aggressive therapy could be offered alongside PC. The service operationalized a model to allow every caregiver to be able to use PC concepts at the bedside on a daily basis as a component of excellent patient care with a dedicated PC professional available for more complex scenarios. Individuals from each service were identified and offered more formalized training. They were given the opportunity to attend nationally recognized pediatric PC educational conferences such as End-of-Life Nursing Education Curriculum–Pediatric Palliative Care, Initiative for Pediatric Palliative Care, and Resolve through Sharing. Interdisciplinary staffs were invited to attend these conferences as a team that included MDs, RNs, SWs, CLSs, case managers, RTs, clinical educators, nurse specialists, chaplains, physical/occupational/speech therapists, art and music therapists, and interpreters. Support for attendance at these conferences and travel expenses were secured via grant funding and staff time was supported by hospital administration. Within a 2-year period, more than 300 members of interdisciplinary teams from throughout the medical center possessed the tools allowing them to incorporate PC into their daily practices in at least a basic fashion.
PC Focus Groups
The need for an arena to implement skills learned in formal training programs was recognized. With the objective to identify and meet area-specific needs, determine diagnostic triggers, and set annual goals, focus groups (FGs) were developed in the 5 core service areas: PICU, NICU, PHO, general pediatrics (GP), and labor/delivery (L/D). The composition of each FG is interdisciplinary, varied, and representative of the population being served. For example, RTs are active in the PICU and NICU FGs, whereas CLSs and art and music therapists are more involved in the GP and PHO FGs. Each FG also has at least 1 parent representative, invited by the FG as having insight into PC needs of the patient and family. The parent volunteer received hospital-mandated volunteer training. At least 1 physician is on each FG. The FGs meet monthly and were initially attended by the PC/NP to ensure uniformity and consistency. Ultimately, each elected chairperson served on the Pediatric Palliative Care Steering Committee, which also meets monthly and is chaired by the PC/NP.
Focus groups have significantly contributed to the success of PC at this children's hospital and were key to ensuring that PC principles were becoming imbedded in the unit culture. The FG was responsible for individualizing unit surveys administered to all care providers in the area to determine current perceived level of provision of PC on that service. For example, staff was asked to score from 1 to 5, with 5 being the highest, their agreement with statements such as, "Patients [age appropriate] are included in treatment decision making." Based on responses, goals and methods for improvement were established. Re-surveys were administered in a year and further plans for improvement were designed (Table 2). The opportunity to work with an interdisciplinary team committed to the same population has been very rewarding to the staff and allows for continued learning and implementation of evidence-based practices. Managers may be members of the FG, have supported meeting attendance on hospital time, and have recognized and rewarded work accomplished by the FG.
Community Services/Collaborations
The need to collaborate with community services was recognized as important to PC services from the beginning. Most of the pediatric PC patients return to their communities and require continuation of PC care at home. Initially, hospital-based pediatric home health staffs attended Initiative for Pediatric Palliative Care and/or End-of-Life Nursing Education Curriculum–Pediatric Palliative Care and further individualized training in pediatric hospice and PC by the PC/NP. Home health incorporated PC and hospice skills into the RN, SW, and chaplain skill base, thus providing seamless continuity of care for pediatric PC patients, especially those with complex, chronic conditions. Less than a year into the program, hospital-based home health and hospice was outsourced to a community agency for home health and hospice. To better meet the needs of the pediatric population, a valuable relationship was established with a pediatric hospice/PC agency in the community who continues to provide this valuable service.
Collaboration with this community agency providing pediatric hospice was essential to the success of the service. When a Medicaid waiver was passed allowing for concurrent hospice services along with attempts toward the cure of a condition, PC was added to the hospice services. The outpatient PC and hospice services for the medical center continue to be well served by this community organization. With their provision of a hospital liaison and collaborative communication systems, patients and their families are assured seamless continuity of care between the hospital and home.
Personnel
Based on the Institute of Medicine mandate, developing The Joint Commission recommendations, and data collected by the PC/NP on program demands and cost avoidance, a year and a half after beginning the service, grant funding was secured to allow for the addition of 2 FTEs RNs, 0.05 FTE administrative assistant, and 0.2 FTE MD. In an effort to continue to strengthen the FGs, the FTE RNs were assigned at 0.5 FTE each to the PICU, NICU, PHO, and GP areas. The RNs were full-time employees, allowing for the other 0.5 FTE of their time to be spent in their usual staff position. This deeper penetration by a known and respected staff member allowed for further integration of PC principles into bedside care, improved MD relationships, and ensured strong continuity with patients and families. The MD position was administrative, providing supervision of PC/NP and collaboration on complex patient management issues.
After another 2 years of continued data collection demonstrating cost avoidance and increasing requests for service, the 2 RN positions became operationally funded, and an increase to a full-time administrative assistant was secured. The RNs, along with the PC/NP, served throughout the children's medical center, with the PC/NP providing initial consultation and care planning. The RN positions were also changed from 4 halftime positions to 2 full-time positions. Their focus areas were consolidated such that 1 RN served primarily PICU and PHO patients, and the other, primarily NICU, L/D, and GP patients, based on individual nursing skills and expertise. To ensure continuity of care, the PC/RN followed a specific patient throughout any admission and subsequent admissions. The costs of the program's first 5 years are delineated on Table 3.
Clinical Care Process
Medical doctor orders are required and received for consultation service from all service areas based on established and physician-vetted diagnostic triggers brought forward by the unit FG. Referrals begin before birth with antenatal diagnoses of potentially lethal conditions or severe prematurity. Pediatric hematology-oncology patients are seen initially at diagnosis, with subsequent consultation for refractory symptom management, at the time of disease relapse, and when consideration is being given to definitive surgery, bone marrow transplantation, and others. Consults are also received for all infants born under 28 weeks gestation or with a known or suspected congenital anomaly. Children with complex chronic conditions are referred from throughout the medical center and outpatient services. When an elective tracheostomy, home ventilator support, or a gastrostomy tube is being considered for neurologic reasons, a PC consult is usually requested. Requests are also received for discussions regarding anticipated changes in home care demands, assistance in addressing the goals of care, and/or plans to allow for natural death. The PC/NP provides an initial assessment and development of PC care plan and provides support to the PC/RN for the continued patient management. The PC/RN coordinates interdisciplinary team and family meetings and community referrals and sees the patient daily in intensive care settings and a minimum of once a week in other care areas. Daily huddles and weekly interdisciplinary team meetings with the PC/NP occur as well.
Continued support is provided during treatment challenges and when a change in treatment goals must be determined. Palliative care provides earlier discussions including decision-making support for families of children with complex, chronic conditions, allowing each admission to be a decision point for determining further goals of care, quality of life determinations, and providing support along the trajectory of that condition.
The service is considered a consultative service, with afterhours PC issues addressed by the primary care team providers who have had formal training in PC but are not dedicated to PC exclusively. There is a goal for 24/7 availability of formal support with the addition of additional staff. Because the entire medical center is now aware that PC begins at diagnosis and is not synonymous with end-of-life care and provides an extra layer of support to systems that may already be in place, the initial work of a board-certified expert PC team has been accomplished and is primed for further development.