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.

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.

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.

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:

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.)

As programs begin to announce their services, it will be important to address the referral process. The benefits of introducing palliative care as early as possible, such as at the time of diagnosis with a life-threatening condition, are widely advocated.^1,14,21,22 From a practical standpoint, the biggest challenges are initiating these discussions and gaining entry from providers or family members for early palliative care team involvement. Marketing materials can address myths and misunderstandings that equate palliative care with giving up, taking away hope, or certainty that the child is dying. Teams need to prepare consistent responses to these types of concerns.

More often than not, a palliative care team may find that its involvement is requested late in the trajectory of a life-threatening event or when death is imminent. Ongoing education at multiple levels throughout the hospital will be necessary to effect culture change. Until there is a universal understanding of pediatric palliative care in hospitals, it will be necessary to reinforce two cardinal principles: curative or life prolonging therapies and palliative treatments can coexist; and this concurrent approach maximally benefits the family and child if it is implemented soon after the life-threatening condition is recognized. Likewise, pediatric palliative care programs need to recognize that the kinds of services needed at the time of diagnosis may differ considerably from the services required at the end of life.²³

A number of resources offer suggestions as to how and when palliative care should be discussed.^9,24 These guides often identify significant medical events or diagnoses, such as the need for a bone marrow transplant or the placement of a non-urgent tracheostomy, that serve as automatic triggers for a consult. With these triggers in place, clinicians may be more inclined to initiate pediatric palliative care earlier, thereby conforming to best practice standards.

In addition to the timing of the team’s involvement, the mechanism by which its input is requested should be defined. The palliative care team will need to decide if a formal order from a physician is required to initiate services, or if any staff or family member can request assistance. How a request for team involvement is initiated may be dictated in part by hospital policy and by whether the services will be billed to insurance, as in a formal consult.