6 Program Development

Tammy I. Kang, Daniel P. Mahoney, Meaghann S. Weaver, and Stacy S. Remke

The field of pediatric palliative care (PPC) has evolved over the past two decades 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 nationwide survey in 2013 showed that 112 of 162 children’s hospitals in the United States had PPC programs and many more were developing them.² Developing and implementing a PPC program requires not only an understanding of the principles and practice of good PPC, but also a familiarity with business and design principles.

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. Incorporating input and fostering ownership longitudinally among all stakeholders, including patients and families, cannot be overestimated. The goal of program development is to change the culture of the healthcare organization to one that anticipates and provides for palliative care needs of children, ideally from the time of their diagnoses.

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 10-fold number of children who have chronic, complex conditions that may shorten lifespan or impact wellness. 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 (grit!) in achieving the goal of excellent interdisciplinary palliative care for children.

Although this chapter focuses on development of a PPC 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. One exception to this is program development in limited resource settings, such as global low- and middle-income countries, which deserves special consideration and will be addressed separately. No hospital-based program would be complete without the ability to coordinate with the community resources that serve these same children and their families. Through such reciprocal relationships 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.

Comprehensive preparation and planning from the earliest stages is essential (see Box 6.1). No PPC program will develop at an institution without the buy-in and support from institutional leadership. It is therefore important to make the case to leadership, as with many palliative care interventions, in the target audience’s language. In the case of institutional leadership and administration, this is frequently the language of business plans and design strategies. The Center to Advance Palliative Care (CAPC) offers comprehensive resources to assist those looking to establish palliative care programs using the “target language” of institutional leadership [CAPC]. Successful planners should identify areas where palliative care program goals can overlap with or support institution-wide goals, incorporate local champions and stakeholders to include family champions, conduct a thorough top-down needs assessment, and plan for stepwise growth and implementation conscious of the new team’s capacity and operating costs.

Identify and Align with Institutional Goals

In 1962, Everett Rogers published Diffusion of Innovation,³ which has been widely applied to a variety of economic and development topics. PPC is an innovation that has established itself as an integral part of the care of seriously ill children, growing from innovative and “early adopter” institutions to now include much of the “early and late majorities” as described by Rogers. This is worth considering when brainstorming strategies for developing new PPC programs as institutions (and the individuals that comprise them) have their own traits that will impact the likelihood of adopting this innovation. Identifying the institution’s values helps early champions and stakeholders focus on goals and strategies most likely to be effective within their target organization. Consider the recommendations of Friedrichsdorf and Bruera, which help planners anticipate institutional challenges and myths related to PPC that frequently must be addressed in the course of program development.⁴

Good planning examines how the palliative care program will fit into the institution 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 (TJC), the National Hospice and Palliative Care Organization (NHPCO), the American Academy of Hospice and Palliative Medicine (AAHPM), the CAPC, and the National Quality Forum (NQF).

Everyone feels a greater sense of ownership in projects in which they feel personally vested. It is from this observation that participatory action research (PAR⁵) has grown in both popularity and efficacy for scholarly work addressing health and social needs of a variety of groups. Similarly, the Institute for Healthcare Improvement (IHI) recommends inclusion of relevant and diverse champions⁶ and stakeholders, inclusive of patient and family members, when working to improve the quality of any process or system within a healthcare setting. Early champions will be able to communicate a cohesive and consistent message that substantiates the need for improved palliative care at the institution. Creating a team of interdisciplinary champions from the start is fundamental to establishing 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, they 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 development team as well as for the larger hospital community.

The development team should expand over the first several months to include respected champions⁶—individuals within the institution who have demonstrated a special interest and expertise in palliative care. The central work of this group is to communicate what is needed, generate institutional support, identify possible solutions, and organize improvements in the delivery of care. To succeed at transformative program development,⁷ it is imperative to assemble individuals who are respected as achievers, experts, innovators, and leaders. They will be key spokespeople in creating a coalition for change.^7,8 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.

Secure Stakeholder Support

Securing institutional stakeholder support begins by consulting with and recruiting key administrative and clinical stakeholders for their opinions and support. This purposeful effort includes seizing every informal or formal opportunity to influence stakeholders by publicizing the program’s vision while building collegiality around a common purpose and including families in the core mission and message.^7,8 In this effort, education is marketing, and marketing is education. Partnering with existing familiar venues within the organization for communication and education, such as Grand Rounds, interdisciplinary staff meetings, clinical rounding, and resident conferences, successfully reaches staff without asking them to attend extra meetings. Participating in these educational initiatives fosters team cohesion and promotes consistency of the PPC vision among the development team as well as throughout the organization. The team 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 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 leaders can foster their ongoing investment in the program. This group’s involvement validates the importance of PPC and helps sanction quality improvement efforts in this area. This phase also includes soliciting constructive feedback from potential antagonists of palliative care program development, 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.

Needs Assessments

New programs or programs wishing to expand often begin by conducting a needs assessment. Typically, programs focus on a detailed clinical needs assessment, which can uncover the concerns of patients, families, and staff in addition to the circumstances and practices that affect the provision of care. The assessment generally describes current clinical metrics, such as the documentation of pain scores and the numbers and locations of hospital deaths, which 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. This type of needs assessment can also serve as a baseline for comparison of metrics 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.

Another helpful approach may be to consider incorporating a top-down needs assessment. This is a way to structure the assessment by prioritizing needs. While organizational priorities are driven by patient needs and community factors, including a top-down approach highlights the importance of incorporating organizational needs and priorities at the onset, particularly if programs are seeking organization funding. A first step for the needs assessment is to consider the needs of the organization—what are the immediate, mid-range, and long-term priorities? How can palliative care assist with achieving some of these goals? A next step is to study the priorities of high-level clinical leadership including chief medical officers, department chairs, and service chiefs. In what ways could palliative care assist with their priorities? Considering these higher level needs early can tailor a detailed clinical needs assessment which typically involves providers, patients, and families. For new programs, the needs identified are often broad and numerous. Beginning with a few key metrics that are important to organizational leadership can build credibility and narrow the scope of initial work to be done. A potential downside to this approach is lack of buy-in from a broader range of individuals who may have an interest in or be affected by the evaluation and results. This can be mitigated with strategic communication and engagement.

For programs ready to engage in a comprehensive clinical needs assessment, there are several avenues to pursue, 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,^9,10 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 pediatric intensive care unit [PICU], neonatal ICU [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 intensive medical interventions for personal or moral reasons, from those who lack familiarity with clinical practice standards in PPC, or from those concerned about either redundancy of services or infringement of their relationships with children and families. The needs assessment often uncovers the belief that a separate program for PPC is unnecessary because it is already done well enough within the institution. A better understanding of the principles of PPC 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.¹¹

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.

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 prepares the planning team for difficulties that may arise in program implementation, and it allows them to develop proactive strategies to avoid or minimize barriers. This activity should include an examination of how existing resources within the institution and community might interface with the PPC program.

Mission, Vision, and Implementation Plan

Within the first few months, the development team must begin to articulate the program goals¹³ which will eventually lead to a mission or vision statement, as well as an implementation plan.^7,8,14 A well-articulated mission statement clearly defines PPC⁷ and reveals core objectives that guide program planning. By contrast, a vision statement should describe the future role of palliative care within the organization as envisioned by the development team. These two statements will serve as the foundation of the business plan and executive summary,¹⁵ which will be described in more detail later in this chapter.

The implementation plan will 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,¹⁶ on advanced care planning and care coordination,¹⁷ or on services within the pediatric oncology population.¹⁸ Each team’s start-up path will depend on the local goals, values, and needs of their institution or organization. The authors recommend starting with a comprehensive palliative care service that is implemented in a stepwise, modular fashion to address the assessed organizational needs according to their priority as determined by the development team and organization leadership. To paraphrase a famous concept, it is better to do one thing well and build on success than to do several things poorly and lose momentum. It is the positive experience of participating in high-quality PPC that will drive the satisfaction and implementation of the team within the institution.¹⁹ In addition to the implementation plan, create a concurrent implementation risk table (Table 6.1). This a way to organize potential implementation challenges, identify the impact of the challenge, and develop potential strategies to mitigate the challenges.

Building a program is a daunting endeavor. Helpful steps include outlining small, manageable steps; using resources that already exist, and establishing a realistic timeline. The CAPC has designed a training methodology for programs at any stage of development. Expert guidance and written worksheets are combined with year-long mentoring. The CAPC website, www.capc.org, also offers extensive program development resources.²⁰

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 to brand and market the program within the institution and the community. Administrators and clinicians, as well as patients and their families, appreciate being able to identify the program and understand its 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 pediatric advanced care team (PACT), pediatric advanced comfort care team (PACCT), and pain and palliative care team. Others have chosen a name that is associated with metaphoric imagery such as Palette of Care, Bridges, Footprints, Compass Care, the Butterfly Program, and Hand in Hand. Parents 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 hope^21,22 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. Either naming approach means the team must be prepared for the ongoing challenge of addressing misperceptions around the term “palliative care” until the term is better understood by society.²¹

Related posts:

Quality in Pediatric Palliative Care Neurological Symptoms Fatigue Practical Aspects of Palliative Care Communication Advanced Heart Disease Children’s Voices: The Experience of Patients and Their Siblings

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