Program Development and Implementation

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8 Program Development and Implementation

Robin Kramer, Stacy S. Remke, Sally Sehring

Culture does not change because we desire to change it. Culture changes when the organization is transformed; the culture reflects the realities of people working together every day.

—Frances Hesselbein, The Key to Cultural Transformation, Leader to Leader, Spring 1999

The field of pediatric palliative care has evolved over the past decade in response to an escalating acknowledgment of need and a call to action by the Institute of Medicine (IOM) Report: When Children Die.1 A report from the First Forum for Pediatric Palliative Care in 20072 indicated that 31 children’s hospitals in the United States had pediatric palliative care programs and many more were developing them. Developing and implementing a palliative care program requires not only an understanding of the principles and practice of good pediatric palliative care, but also a familiarity with techniques to bring about change within an institution.

Palliative care program development is not a fixed, linear process; rather, it unfolds and takes shape over time. There are opportunities to address needed changes in organizations in each phase of program evolution. The necessity of attending to the interests of all stakeholders over time cannot be underestimated. The goal of program development is to change the culture of the healthcare organization in order to anticipate and provide for palliative care needs of children, ideally from the time of their diagnosis.

The majority of children with life-threatening conditions are referred to a regionalized medical center with expertise in complex pediatric health problems. Most childhood deaths occur in hospitals. These same hospitals may provide care for an additional estimated ten-fold number of children who have chronic, complex conditions that may limit life. It is crucial for these institutions to make palliative care available to children and their families.

This chapter outlines phases of program development, including suggestions for tasks or important work to be done; challenges; and strategies to promote buy-in and generate small successes that facilitate bigger change. Change is an ongoing process that requires focused, consistent efforts and responsiveness to emerging obstacles and needs. Shifting the culture of an institution requires both flexibility and tenacity in achieving the goal of excellent interdisciplinary palliative care for children.

Although this chapter focuses on development of a pediatric palliative care program in the hospital, the phases of growth and the challenges of each stage share commonalities across diverse settings. The strategies offered here can be extrapolated and adapted to other circumstances. No hospital-based program would be complete without the ability to coordinate with the community resources that serve these same children and their families. It is only through such reciprocal relationships that continuity of care can occur.

The phases of program development described are neither rigid nor self-contained. Certain tasks, such as ensuring alignment with institutional goals and priorities, should be repeated in each phase. Some tasks that drive organizational change may prove too difficult to be completed within one phase and thus stages may blur. Nevertheless, it is useful to have a structure that facilitates planning the requisite steps for change and addresses challenges proactively as the program evolves.

Phase I: Planning

Comprehensive planning from the earliest stages is essential (see Table 8-1). An early start-up strategy often involves convening an interdisciplinary task force. Five to seven members, representing different medical specialties, can identify needs and delineate a plan toward improving the institution’s provision of palliative care. The first task is to collect institution-wide information about practices, policies, and procedures related to palliative care. It is also critical to identify the many ways in which children with life-threatening conditions move through the organization. Early on, raising others’ awareness of the deficits in care delivery arouses a sense of need or urgency to make improvements.3,4 Identifying the many issues, barriers, and concerns related to the provision of care helps define the problem that the planning group is organizing to improve.

TABLE 8-1 Program Development Phase 1: Planning

Marshall resources for change Define and promote the Program Educate
• Carefully select task force/ planning committee members
• Engage stakeholders
• Identify partners for collaboration
• Investigate start up funding possibilities
• Create an action plan to initiate change

• Align mission & goals with those of the organization
• Solicit input from proponents & antagonists
• Uncover strengths & weaknesses
• Convey clear, consistent program message
• Communicate needs & plans

• Hone expertise & skill of planning committee
• Use every opportunity, formal & informal
• Extend awareness of PPC principles
• Reinforce the message

Identify early champions

Based on this preliminary information, the task force must communicate a cohesive and consistent message that substantiates the need for improved palliative care at the institution. Initial task force members are selected for their ability to articulate this need, as well as to gain support as the planning team moves forward. Fostering interdisciplinary leadership from the start is fundamental to creating a balanced program. It is strategic to include a well-respected physician who will advocate for inclusion of the interdisciplinary team. Whether or not this individual eventually assumes the medical directorship, he or she can help advance early planning efforts. In many settings, particularly within an academic hospital, a physician and a clinician from another discipline share leadership responsibilities. The leader or leaders should be clearly defined for the planning group as well as for the larger hospital community.

The task force should expand over the first several months to include respected champions5—staff members who have demonstrated a special interest and expertise in palliative care. The central work of this group is to communicate what is needed, to generate institutional support, to identify possible solutions, and to organize improvements in the delivery of care. To succeed at transformative program development,3 it is critical to assemble individuals who are respected as achievers, experts, innovators, and leaders. They will be key spokespeople in creating a coalition for change.3,4 Recruitment focuses on individuals who have power within the institution through their influence and reputation; the skill to leverage organizational resources; and the clinical expertise to advance program development effectively.

Create a vision and action plan

Within the first few months, the task force must begin to articulate the program goals,6 which will eventually lead to a mission or vision statement.3,4,7 A well-articulated statement clearly defines pediatric palliative care7 and reveals core objectives that guide program planning. It will be necessary to explain the range of services that the program plans to offer. The start-up paths of programs can vary. For example, programs have begun with a primary focus on staff support and education,8 on advanced care planning and care coordination,9 or on services within the pediatric oncology population.10

Building a program is a daunting endeavor. It is fundamental to outline small, manageable steps; to use resources that already exist; and to establish a realistic timeline. The Center to Advance Palliative Care (CAPC) has designed a training methodology for programs at any stage of development. Expert guidance and written worksheets are combined with yearlong mentoring.11 The CAPC website, www.capc.org, also offers extensive program development resources.

Education as a development tool

During this early phase, it is essential to provide pediatric palliative care interdisciplinary education for the planning committee. This education increases the confidence of the task force members in their clinical skills, as well as gives them an understanding of the steps involved in program development. The dual focus helps to steer program efforts in a productive direction while developing collegial relationships for networking and mentorship. In addition, educating the entire hospital community raises awareness of the need and benefits of palliative care and conveys how best to use the nascent services. Capitalizing on existing venues for communication and education, such as Grand Rounds, staff meetings, and resident conferences, is a successful way to reach staff without asking them to attend extra meetings. Participating in these educational initiatives fosters group cohesion and promotes consistency of the pediatric palliative care vision among the planning members as well as throughout the organization.

Systems Assessment: Align with Institutional Goals

A systems assessment examines how the palliative care program will fit into the organization, and whether its goals are compatible with the overall mission of the institution. The receptivity of hospital administrators is enhanced not only through adherence to organizational priorities, but also through meeting national standards of excellence for palliative care. These standards are recommended by influential organizations such as the American Academy of Pediatrics (AAP), the Joint Commission, the National Hospice and Palliative Care Organization (NHPCO), the American Academy of Hospice and Palliative Medicine (AAHPM), the Center to Advance Palliative Care (CAPC), and the National Quality Forum.

A helpful assessment activity is the Strengths, Weaknesses, Opportunities, and Threats (SWOT) analysis,12 which can reveal the overt and covert power dynamics of the organization. This type of introspection can prepare the team for difficulties that may arise in program implementation, and it allows them to develop proactive strategies to avoid or minimize barriers.

A systems assessment also determines how existing resources within the institution and community might interface with the pediatric palliative care program. The task force can contact those in charge of pertinent departments, clinical services, committees, or community agencies, proposing collaboration to improve efficiency and standardize practice.

Secure stakeholder support

Key administrative and clinical stakeholders should be consulted for their opinions and also recruited for support. Every informal or formal opportunity to influence stakeholders can be seized to publicize the program’s vision while building collegiality around a common purpose.3,4 The task force should be ready to communicate a compelling case for the program within the context of an informed understanding of the organization. Ultimately, the goal is to obtain endorsement of the endeavor; doing so secures essential stakeholder buy-in and paves the way for access to tangible resources needed to establish the program.

Creating a small advisory council of administrative and clinical stakeholders can foster their ongoing investment in the program. This group’s involvement validates the importance of pediatric palliative care and helps sanction quality improvement efforts in this area. It is also important to solicit constructive feedback from potential antagonists, as well as from staunch supporters. Individuals from both groups can be recruited as advocates for the program, and they should be given options for their involvement.

Establish workgroups

As the task force grows, smaller work groups can tackle specific projects such as systems and needs assessments, educational training sessions, and PowerPoint presentations for stakeholders. This is also the time, perhaps for a designated group, to secure start-up funding, write grants for specific projects and investigate options for ongoing financial support. The institution’s development office can be helpful in obtaining seed money to fund early program planning and educational efforts. It is important to find out about any rules or procedures that may effect applying for grants, soliciting funds from the community, and gaining publicity. Knowing these guidelines ahead of time can save time and frustration, and may even help to identify existing resources within the organization. The development office staff can also direct funds to the pediatric palliative care program if they have been given a good understanding of the program’s vision and goals. Involving these resource people early opens doors, provokes curiosity, raises awareness, and influences future stakeholders’ interest.

Conduct a needs assessment

A formal needs assessment can uncover the concerns of patients, families, and staff, in addition to the circumstances and practices that affect the provision of care. It describes current clinical metrics, such as the documentation of pain scores and the numbers and locations of hospital deaths, that can validate the program’s necessity and scope. The data identify strengths and weaknesses, as well as challenges and opportunities for quality improvement initiatives—all critical for program development. The needs assessment also serves as a baseline for comparison once the program is established: what progress is being made, where changes are still needed, and whether services are making a difference. Thus, planning efforts are designed to integrate data, service delivery strategies, and goals from the outset, facilitating an ongoing process of evaluation and improvement.

There are several avenues to pursue in developing a needs assessment, including reviewing the literature; contacting other institutions for advice; sharing tools that can be modified to address unique institutional questions; and enlisting the assistance of other departments within the organization. The Quality Improvement (QI) staff may already have relevant information or may be able to help with data collection. Other areas, such as strategic support, may be able to analyze pertinent hospital statistics including length of stay (LOS) in intensive care settings prior to death, days on the ventilator, and costs associated with the last days of life. Needs assessments may also include a chart audit, a staff survey, a parent survey, focus groups with providers or family members, or the results from applicable metrics already collected at the institution, such as Press Ganey Satisfaction with Care scores. A broad-based understanding of organizational issues and opinions is important. Clinicians and administrators surveyed should represent various disciplines and levels of experience; families should represent different backgrounds and have children with different ages and diagnoses. A needs assessment can turn into a labor-intensive endeavor, so adequate time and resources should be allocated. A realistic option is to pilot a needs assessment in one or two areas (such as the PICU, NICU or Hematology Oncology service), and then eventually expand to other areas.

A representative appraisal also seeks opinions from clinicians who may be less receptive to program development efforts. Resistance may come from those who are uncomfortable with limiting aggressive medical interventions for personal or moral reasons, or from those who lack familiarity with clinical practice standards in pediatric palliative care. Others are concerned about redundancy of services or that their relationships with children and families will be compromised by another team stepping in. The needs assessment often uncovers the belief that a separate program for pediatric palliative care is unnecessary because it is already done well enough within the institution. A better understanding of the principles of pediatric palliative care can mitigate many of these objections, and staff education is often a result of the assessment itself.

Comparing the institution’s palliative care program efforts with those of other local, regional, and national institutions is also valuable. Ultimately, the data from benchmarking, the systems assessment, and the needs assessment will comprise the evidence that makes a solid case for program support to the institution and potential funding sources. The information also contributes to the development of a strategic business plan, and focuses clinical resources where they are most needed.13

Strategies should be well-thought out for communicating the assessment results, together with program recommendations, to all leadership groups. Emotionally charged, real-life clinical stories, both positive and negative, can highlight critical points and carry the important message of family-centered care. All of this initial information identifies a clear direction for the program’s development and promotes the acceptance necessary to move into the next phase.

Phase II: Creating the Foundation: Program Implementation

The tasks during this phase are to delineate both the scope and components of the pediatric palliative care services that will be offered, and to elucidate the logistics involved in service delivery and program marketing (see Table 8-2). Helpful steps include making a site visit to learn from other successful programs and building collaborative relationships with key personnel from departments within the hospital. Take time to learn the options; carefully consider what may work well in the organization, what may present unforeseen barriers, and how internal resources might be used to support program efforts. Throughout this phase, it will also be important to constantly analyze services given ongoing needs, gaps, strengths, and priorities, culminating in a multiyear business plan to ensure sustainability. Building a comprehensive program also includes developing expertise at interfacing effectively with community agencies, optimizing palliative care services across settings.

TABLE 8-2 Program Development Phase II: Program Implementation

Find & create allies Build team & define function Show your worth
• Identify early clinical supporters & pilot services in receptive area
• Cultivate strategic partners necessary for implementation
• Draft a strategic business plan

• Delineate team roles, expectations, & needs
• Promote team visibility & choose a name
• Foster flexibility & efficacy
• Affirm & support patient/family relationship with primary providers
• Facilitate & model communication
• Set priorities in sync with resources/limitations
• Solicit feedback
• Proactively plan for growth
• Demonstrate “value added”
• Establish cooperative relationships with hospital providers & community
• Contribute to organizational operations
• Track data re: program’s impact & communicate it
• Educate re: standard of excellence

As this program building and implementation phase rolls out, it is helpful to note the following intersecting elements that all go into a strong program:

• Scope of Services: The particular set of services and interventions that the team will offer in the setting in which they work. This may include interdisciplinary assessment, interventions and referrals, direct care, crisis intervention, and advanced care planning. This may also be defined by specific patient populations, such as oncology patients or those with neuro-developmental disorders. Careful consideration of the scope of services can assist the team in managing program activities by avoiding unrealistic expectations, excessive workloads, and program growth at a pace that outstrips resources.
• Standards: In the area of pediatric palliative care, NHPCO has identified standards for pediatrics18 that incorporate the key elements from adult standards, the National Quality Forum13a and the National Consensus Project.34 In addition, several groups, including CAPC and the American Academy of Pediatrics14 have outlined essential service standards and begun to define the expectations that need to be met in order to offer a quality program.
• Core Competencies: Extensive expertise in specifically defined skill sets that pediatric palliative care team members demonstrate, enabling them to be highly effective practitioners. These core competencies have begun to be delineated by several groups, including CAPC and ACGME (www.acgme.org). Discipline-specific competency guidelines are also emerging as the field advances, for example, in social work.15 Although these competencies will overlap with those of colleagues who practice in other specialty areas, they also include certain skills and perspectives that particularly belong to pediatric palliative care. This combination of strengths will help establish the value added by the palliative care service to their colleagues and to patient and family consumers.

After the most pressing initial needs are met, these standards and competencies should continue to be used to establish goals to guide further program development over a planned trajectory. For example, in order to meet standards for child development expertise in talking with a child about the possibility of death, a team may establish educational programs to help build that knowledge base. There would be an anticipated outcome that expertise is available from the team within a specified time. In another situation, perhaps the team will link new staff to specified volume indicators so that the expectations for a practitioner’s caseload are well communicated and understood by all parties.

It can also be helpful to consider how these program elements can help set the work of the team apart from customary practice of the institution. Is there greater skill or knowledge in some areas? Is there more experience with certain situations? Does the pediatric palliative care program offer an assurance that certain resources and skill sets are brought into a complex situation? What’s the value added by the pediatric palliative care team? These kinds of program issues and questions are challenging to address because the field is so new. Nonetheless, it is useful to consider these aspects of successful service delivery in order to establish expectations, manage clinical tasks, and plan for interdisciplinary team growth.

Create an Identity: Choosing a Program Name

The program’s name should be selected by the time Phase II begins. Consistently using a name helps brand and market the program within the institution and the community. It is important for administrators and clinicians, as well as patients and their families, to be able to identify the program and to understand the focus for services. Clear identification makes it easier for those who need help to seek assistance from the program, and for those who appreciate the program’s efforts to give credit where credit is due. Some programs have chosen succinct, medical based names, with or without reference to palliative care, such as PACT: Pediatric Advanced Care Team, PACCT: Pediatric Advanced Comfort Care Team, and Pain and Palliative Care Team. Others have chosen a name that is associated with metaphoric imagery such as Footprints, Compass Care, and The Butterfly Program. Parents in particular have emphasized how an identified program name improves access to services. Some believe, however, that including palliative care in the name can be associated with diminished hope16,17 and associated with hospice. Other opinions focus on the importance of calling it what it is, and then working to dispel misunderstandings in the broader community. Be prepared for the ongoing challenge of addressing misperceptions around the term palliative care until the term is better understood by society.16

Fundamental program components

There are fundamental program components that serve as the building blocks of pediatric palliative care program development. The specific characteristics and infrastructure for implementation may vary considerably from program to program.

Service Delivery

The team

The current state of the art of pediatric palliative care requires effective, collaborative efforts of an interdisciplinary team, which includes the child, as appropriate, and the family.1,14,18 Team members may be selected from the original planning group. However, these individuals will need approval from their departments and the organization to allocate time in their current roles to provide palliative services throughout the hospital. Once assembled, the interdisciplinary pediatric palliative care team will work closely with a larger advisory group and/or task force to continue to direct the program’s growth.

Including representation from core disciplines—medicine, nursing, social work, psychology or psychiatry, child life, and spiritual care—is necessary for promoting interdisciplinary leadership, planning, practice, and acceptance. “The team approach ensures that the stresses and responsibilities of this work are shared.”19 Collaboration among various disciplines ensures a holistic approach to providing pediatric palliative care to patients and their families. The palliative care team may look different from one organization to another, depending on the size, resources, fiscal constraints, and culture of the institution. Hospital-based teams are often led by physicians. Additional staff may include an advanced practice nurse (APN) and a chaplain, and then rely on unit-based staff from child life, social work, case management, and pharmacy to round out interdisciplinary input as needed. Other models involve dedicated staff time for pediatric palliative care from the outset. The composition of the initial team is often a function of passionate interest, expertise, availability, budgetary constraints, and fit within the organizational structure.

Over time, the team’s composition may change to accommodate lessons learned, as well as availability of specialists. It is important to start and then to grow the team, and to not become stalled by an inability to staff the ideal team configuration. Resource pressures, the startup strategy, unclear utilization patterns, and other limitations may preclude dedicating a team of practitioners solely to palliative care at the outset. New staff can be added as emerging needs, program acceptance, and financial support are demonstrated. Other, more established programs can provide guidance in planning team membership and expansion. The CAPC website also has resources to help calculate staffing requirements, including projected needs based on program growth over the next several years.20

Members of the team will need to be highly visible and receptive to a wide range of staff, patients, and families. When feasible, consider selecting team members who represent practice areas where specific needs have been uncovered or where program receptivity is anticipated, such as pediatric oncology or pediatric intensive care. Clinical proficiency, leadership abilities, excellent interpersonal and diplomacy skills, and a capacity to influence others are qualities desired in each team member.

Although it may be easier to start with a dedicated pediatric palliative care physician and nurse while using unit or subspecialty staff to round out interdisciplinary participation, there can be limitations of this model. As a case in point, a medical director of a two-year-old program that began using unit-based ancillary staff said he now recommends using dedicated staff from the beginning to accelerate skill acquisition and to enhance cohesion as a team. A social worker or chaplain focused exclusively on palliative care is likely to develop greater expertise than someone who practices palliative care as only a part of their clinical assignment. Teams that learn and grow together often develop greater capacity than a group of individual practitioners operating in parallel.

Practice model

Once the interdisciplinary team has been established, it is time to consider the following:

• What types of services can the team provide?
• How will providers and families within the institution find out about these services?
• When should patients be referred and how can the team be contacted?
• Will a formal consult be obtained, and is there a mechanism for billing?
• Will there be resistance to making appropriate referrals, and how will this resistance be countered?
• How will these requests and services be tracked and validated for the institution’s administration?
• How will the program be structured to address these demands?

Achieving a feasible structure depends upon the availability of funding and personnel, as well as the extent of institutional acceptance for the program. Many programs use a structure that resembles a medical consultation service model, wherein a formal consult request is made to the pediatric palliative care team. Institutional protocols for a formal consult often require that a physician make the request and specify a reason for the referral, and that the consult be completed within a specific time frame. In some institutions, this request may be for a particular problem such as pain control or for transfer to the palliative care team for end of life management. The consult team, generally led by a physician or an APN, is typically identified as a distinct service having additional training, skills, and, in an increasing number of programs, formal credentialing or certification in palliative care appropriate to their discipline.

In the consultative model, the primary team acknowledges a need for outside assistance. Without the primary team’s acknowledgment of need and request for services, pediatric palliative care may not be available to all children and families who would benefit, or access may come only at the end of life. Ongoing provider education, which reiterates the principles of palliative care and clarifies the distinction between palliative, end of life, and hospice care, is crucial for promoting provider acceptance and the timely initiation of services.

An alternative to a consultative model is an integrated structure, where the interdisciplinary team supports and educates providers in developing basic competencies in pediatric palliative care appropriate to their disciplines. This approach helps incorporate palliative care as a core value throughout the institution. The primary team, guided by the pediatric palliative care team, ensures the delivery and continuity of palliative care through recovery or death. Policy and procedure guidelines may be needed in this model to facilitate buy in from the larger system. The team may also help units develop communication tools or care algorithms that optimize care throughout the hospital. In individual cases, the team may provide resources to help with difficult symptom management and may facilitate consensus-building among providers. They may offer their services in mentoring the primary team in having difficult conversations if needed. The pediatric palliative care team can also identify helpful practices being used in some parts of the hospital that could be more widely disseminated for the benefit of patients in other areas.

An integrated approach can help transition palliative care into the institution when either funding or hospital support precludes hiring a separate consult team, or when a full complement of providers are unavailable. The integrated model also has the advantage that it maintains continuity with familiar and trusted care providers at the most trying times for families and can support the primary team in introducing palliative care resources early in the illness. The pediatric palliative care team’s involvement could come via suggestions at interdisciplinary unit rounds, through the charge or bedside nurse, or when the social worker from the primary team requests additional resources or clinical support. This model helps to raise the bar of clinical practice in the hospital by providing ongoing education at the bedside. The primary team invites pediatric palliative care involvement and participates with them in direct patient and family contact. In either model, the presence of both teams helps maintain consistency of message and improves communication. In this way the pediatric palliative care team and primary team learn from and enhance each other’s work.

Consultative and integrated models are not mutually exclusive. In practice, features of both models are often found together in institutions with successful programs. The goal is to couple broad-based institutional understanding and acceptance with the expertise of the interdisciplinary palliative care team to address the most complex needs. As in any other specialty, providers get better and more efficient as they practice. This capacity development sets the skills of the pediatric palliative care team apart over time, and helps define their expertise to the organization.

Coverage and referral considerations

Ideally, regardless of the program model, team members with training in palliative care should be available to provide round-the-clock assistance to hospital staff.13,14 Program size, demand, and allocated resources will dictate team availability. It is important to plan coverage realistically to both manage expectations and avoid burnout. Many programs provide on-site consults Monday through Friday, and offer phone consultation during off-hours. This model can help staff contend with patient needs, while protecting team members’ time off. With a consult model, the practical aspects of staffing require a larger, more formal commitment of dedicated physician or APN FTE to fulfill the clinical demands of a separate service. This expense can be partially offset by billing for eligible clinical services. State agencies, and even the institution itself, can have different rules specifying who can bill for care, so it is important to know these rules. However, at this time, it is not feasible for pediatric hospital-based programs in the United States to meet program costs through consult-billing reimbursements. Philanthropy and hospital support remain important sources for funding the pediatric palliative care program’s operations. (See Business Plan and Funding.)

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