8 Quality in Pediatric Palliative Care

Conrad Williams IV, Amanda L. Thompson, and Kathie Kobler

Introduction

Across all healthcare settings and specialties, clinicians are charged with providing care that exemplifies the National Academy of Medicine’s quality aims of safe, effective, patient-centered, timely, efficient, and equitable care.¹ Pediatric palliative care (PPC) provision inherently incorporates the Institute for Healthcare Improvement’s quadruple aim for optimizing care: enhancing the patient experience, improving health outcomes, reducing healthcare costs, and enhancing healthcare professionals’ experiences.² Measurement of healthcare quality is often framed in the Donabedian model,³ as teams evaluate the structures, processes, and outcomes of their care.⁴ Implementing quality measures and reporting health outcome data are increasingly important in the current climate of healthcare accountability, accreditation, and reimbursement.^4,5

As the field of PPC matures, interdisciplinary PPC teams are called to draw from the growing evidence base and deepen their quality-focused efforts to optimize care for children with serious illness. Quality in healthcare is grounded in providing effective, safe care that results in optimal or desired health and is reflected by a culture of excellence.⁶ Quality in PPC embodies and extends this definition by addressing and optimizing the well-being of both the child and family in an interdisciplinary fashion. In this chapter, we explore quality in PPC from the child/family, individual clinician, and team perspectives, and we provide a review of national quality-focused organizations and initiatives currently advancing PPC. Practical strategies are offered from an interdisciplinary perspective to encourage PPC teams to incorporate quality measurement and improvement initiatives into their clinical practice.

Importance of Quality in PPC

PPC clinicians strive to provide quality care with integrity and in a manner that honors the preferences and goals of children with serious illness and their families. Core PPC tasks include providing effective interventions that enhance well-being, coordinating care throughout the child’s trajectory and across all settings, and supporting problem-solving and decision-making for all involved in the child’s care.⁷ Quality-focused initiatives to evaluate how such core tasks are provided and to measure their outcomes are vital to optimize access, reduce variation in services delivered, and build evidence about the impact of PPC. Contributions from quality improvement initiatives allow PPC clinicians to nimbly address time-sensitive issues impacting a child or family. New comprehensive, evidence-based clinical practice guidelines provide a sound framework for PPC teams to engage in quality assurance activities and evaluate how they are achieving their goals and intended level of care delivery.

Quality Challenges and Gaps in Pediatric Palliative Care

From an individual program level, high-quality PPC provision depends on team structure and staffing, costs and resource availability, and individual clinicians’ level of education, expertise, and competency in quality improvement (QI) methodology. Any strain on these essential components impacts both team members’ capacity to optimally meet the needs of the children in their care and their ability to engage in quality measurement activities.⁸

In the field as a whole, most existing palliative quality measurement initiatives are adult-care oriented and not fully applicable to the unique needs of children with serious illness.⁹ The PPC community is significantly challenged in developing pediatric-focused measures to capture the complexities and nuances inherent when managing symptoms, optimizing communication, and coordinating care for a vast spectrum of neonatal, pediatric, and young adult conditions and care trajectories. The dearth of evidence-based literature, relatively small population served, and lack of time and funding to develop quality measures are current quality-related hurdles encountered by PPC teams. The variability of PPC program structure and delivery models further complicates the field’s ability to benchmark quality and productivity.¹⁰ While PPC research continues to deepen, clinicians are challenged by the relative dearth of high-quality, psychometrically sound instruments to assess the impact of PPC interventions.¹¹

PPC-focused research leads to the development of new knowledge, which is critical to QI initiatives that implement such new knowledge. Although the PPC literature has grown substantially over the past two decades, significant gaps remain in the current research base. Identifying these gaps will encourage investigators to engage in collaborative and interdisciplinary PPC scholarship efforts. Research priorities may be distinct from adult palliative care⁹ and include pediatric-specific palliative and end-of-life quality and outcomes measures, along with evidence-based intervention trials.

In a multidisciplinary workshop conducted by the Pediatric Palliative Care Research Network, PPC experts and rising investigators in the field identified five crucial research topics for the growth of PPC: (1) advance symptom and outcomes measurement; (2) improved symptom management and quality of life interventions; (3) improvement of communication, elicitation of goals of care, and decision-making; (4) understanding of family impact and improvement of family adaptation and coping; and (5) analysis and improvement of systems of care, policy, and education.¹² These five areas line up well with important quality initiatives in PPC that might ensure the implementation of developing evidence-based practice in these five topics. Workshop attendees also emphasized the importance of enhancing the early career training and ongoing professional development of PPC investigators, along with developing core PPC research resources, such as large administrative databases and valid and reliable measures.¹²

Initiatives in PPC that are focused on fostering increased attention to research and quality efforts are crucial to support sustained and efficient development of evidence-based and high-quality PPC practice. Such initiatives also are able to support those who choose a career path focused on PPC research or quality.

Perspectives on Quality in Pediatric Palliative Care

Quality PPC provision depends on an awareness of the experiences and perspectives of all involved in a child’s care, followed by a willingness to tailor interventions and support to meet the preferences and goals of each family. This section explores considerations on quality from the perspectives of those actively receiving or providing PPC.

Listening and attending to the individualized needs of a child with serious illness and his or her family is perhaps the purest form of quality in PPC. PPC teams are encouraged to reflect on and remember ways in which they actively seek to identify, acknowledge, and honor a child’s perspective amid a complex care situation. Ensuring that team members have the time and space in their schedules to engage thoughtfully with a child and family is a necessity in quality PPC care provision. In Box 8.1, Mattie’s parents, Victoria and Peter Brown, offer their reflections on what quality in PPC means to their family, and how their experiences are now shaping quality care for others.

Research teams have created innovative methods to evaluate a child’s experiences during treatment in order to enhance quality symptom management¹³ and to better assess child/parental needs at the start of PPC provision.¹⁴ Researchers also explored what it means for parents to be a “good parent” during their child’s serious illness to further enhance strategies to support parents during decision-making.¹⁵ In their research to understand parents’ perspectives as their child received home-based hospice or PPC, Thienprayoon and colleagues¹⁶ identified that parents prioritized compassionate care as a key domain for quality PPC. This new knowledge sets the stage for the development and selection of child-/family-centered quality measures.

Individual Clinician and Team Reflection on Practice

In addition to understanding the child/family perspective, PPC clinicians should be mindful of how quality is reflected in their daily practice. Incorporating strategies for both individual clinician and PPC team reflection on practice is imperative to ensuring quality of care for individual children, as well as identifying avenues for QI within a PPC program. Box 8.2 offers examples of self-inventory questions to assist with fostering a culture of honest inquiry and process improvement orientation, which can ultimately lead to team members collaborating in QI projects.

Creating effective methods to measure quality in palliative care for children and adults is recognized as a vital need for the entire field.^4,7,17 On a national level, palliative care–focused quality initiatives and organizations have been established to foster collaboration and a standardized approach to quality-related efforts. While many of these quality initiatives are adult-care oriented, PPC teams are encouraged to familiarize themselves with these organizations and initiatives because the resources and guidance they offer may be adapted by PPC teams to meet their quality measurement and QI needs. What follows is a synthesis of such resources, with attention to PPC team applicability. Table 8.1 provides a summary of how to access each, with notation of PPC-specific resources.

National Quality

Organizations National Quality Forum (NQF) is a nationwide membership organization devoted to improving healthcare through quality measurement. The NQF is recognized as the leader in setting the standards for healthcare measurement; NQF members have access to a wide range of QI resources and tools. The NQF has robust adult-oriented palliative and end-of-life measures,¹⁸ which are used as the framework for many adult-focused quality initiatives. However, these NQF palliative measures have not been updated since their original creation. The NQF Healthcare Coordination Measures initiative may be of interest to PPC clinicians who coordinate care for children across settings.

Measuring What Matters (MWM) is a consensus project of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA), with a focus on developing quality measures related to current palliative care guidelines and standards. MWM investigators identified potential quality indicators that mapped onto the National Consensus Project’s (NCP) Clinical Practice Guideline domains.¹⁹ Using a Delphi process with key stakeholders, the list was narrowed to 10 quality palliative measures: one in the NCP domain Structure and Process (Comprehensive Assessment), three in Physical Aspects (Screening for Physical Symptoms, Pain Treatment, and Dyspnea Screening and Management), one in Psychological and Psychiatric Aspects (Discussion of Emotional or Psychological Needs), one in Spiritual and Existential Aspects (Discussion of Spiritual/Religious Concerns), and three in Ethical and Legal Aspects (Documentation of Surrogate, Treatment Preferences, and Care Consistency with Documented Care Preferences). While MWM measures are primarily adult-care focused, reviewing them will inspire PPC teams to consider how similar measures could be adapted to their current program and patient needs.

For the pursuit of high-quality palliative to be successful, it is crucial that programs participate in quality data collection and analysis collaboratives. Historically, each individual program has developed its own unique methods for tracking and analyzing data that are not easily translatable outside of that specific organization. As a result, much of the quality work exists in individual silos.²⁰ There have been exciting developments regarding facilitating collaborative quality work that PPC clinicians should explore.

The Global Palliative Care Quality Alliance (GPCQA) was developed in 2007, as a quality assessment and improvement collaboration initially focused on a single state and inclusive of academic and community care settings. Originating at Duke University, GPCQA developed into a fee-based membership collaborative with national and even global scope.²¹ While GPCQA has established an overall palliative care outcome registry, there have been no specific efforts focused on pediatrics within this alliance. In 2020, GPCQA became one of the founding partners of the Palliative Care Quality Collaborative (PCQC) and no longer functions independently.

The Palliative Care Quality Network (PCQN), established in 2009 at the University of California-San Francisco, also was focused initially within a single state and then expanded nationally with a fee-based membership structure. PCQN’s stated goal is to help sustain and grow palliative care by providing teams with all the tools, data, and support they need to demonstrate value, build strong teams, and promote resilience in their clinicians. The core dataset focuses on care processes and patient-level outcomes in addition to metrics around financial outcomes of palliative care. Like GPCQA, data are entered in a registry, and custom reports are produced for both individual member programs and the whole collaborative.²² PCQN has also focused on the unique needs of PPC.²³ Along with GPCQA, the PCQN serves as a founding partner of the PCQC and no longer functions independently.

National Palliative Care Registry. While GPCQA and PCQN have primarily emphasized patient-level outcomes, the National Palliative Care Registry is focused on the structural and programmatic delivery of high-quality palliative care across all healthcare settings. A joint effort of the Center to Advance Palliative Care and the National Palliative Care Research Center, the registry aims to provide data that programs can use to secure, expand, and retain resources for delivery of high-quality palliative care and to support the establishment of new palliative care programs where none exists. The Registry collects data on all service settings across the continuum of care, including hospital, long-term care, office/clinic, and home-based palliative care. The Registry formatting was recently updated to further meet the unique needs of pediatric programs, and PPC clinicians are encouraged to submit their team’s data to both support their program’s measurement needs and contribute to the national PPC dialogue.

The PCQC is a recently established 501c3 effort that combines GPCQA, PCQN, and the National Palliative Care Registry into one organization to collect program-level data on structure and process and patient-level data. The goal of PCQC is to improve the care and well-being of people with serious illness and their caregivers by delivering timely and useful patient- and program-centered data that identifies and promotes best practices through QI research and supports accreditation, accountability, and benchmarking. A PPC physician serves on the PCQC Board of Directors. A significant investment in the PCQC infrastructure will ensure integration with electronic health record (EHR) systems and real-time access to data analysis and visualization.²⁴ All adult and pediatric palliative programs are strongly encouraged to commit to participating in the PCQC collaborative registries. Participation in the program-level data and reporting comes at no cost. There is a fee associated with the patient-level data entry and reporting.

Pediatric Palliative Improvement Network. Specifically, within the field of PPC, the Pediatric Palliative Improvement Network has formed as a loose association of interdisciplinary professionals from pediatric programs across the country that span care settings. The network has focused on QI education mainly through holding regular conferences and online collaboration. Additionally, members have participated in a collaborative QI project focused on pain assessment. The group used the American Academy of Pediatrics Quality Improvement Data Aggregator to collect, analyze, and report data.²⁵

Pediatric-Specific Collaborative Efforts, Guidelines, Standards

The growth of a more robust evidence base in PPC allows for the ongoing development and revision of clinical care guidelines (i.e., practice recommendations) and standards of care (i.e., best practices) that lay the blueprint for quality clinical care of patients and their families within and across institutions. Several organizations and multidisciplinary efforts, to date, have outlined standards or guidelines for palliative care, each including a focus on PPC.

The National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care, 4th edition. The latest edition of the NCP guidelines for quality palliative care outlines core concepts, structures, and processes necessary for quality palliative care, with an emphasis on access to quality care for all people with serious illness regardless of setting, diagnosis, prognosis, or age.²⁶ Developed by 16 national organizations with experts representing all disciplines in hospice and palliative care and endorsed by more than 80 national organizations, the NCP guidelines outline criteria across eight domains for quality palliative care provision. Each domain is supported by a systematic review of evidence²⁷ and includes an emphasis on assessment, care coordination, culturally inclusive care, and communication. Operational implications are now outlined for each domain, including a description of essential skills needed by all PPC clinicians for each domain.²⁶ Domain 1, Guideline 1.9 emphasizes the importance of continuous QI work for all palliative care teams.²⁶

The PPC community was actively engaged in the writing and review of the fourth edition, resulting in deepened perinatal-, neonatal-, and pediatric-focused criteria in each domain, along with pediatric case examples, program exemplars, and PPC evidence and resources. PPC clinicians can use the NCP Guidelines to enhance their existing program and identify opportunities for quality care measurement and QI improvement activities.

National Hospice and Palliative Care Organization’s (NHPCO) Standards of Practice. NHPCO’s Standards of Practice for Hospice Programs (revised in 2019) are organized around core components of quality hospice care and thereby provide a method for organizations to perform quality self-assessments and/or set performance benchmarks. The NHPCO Standards include pediatric-specific criteria²⁸ that serve as a supplement for palliative and/or hospice programs providing care to children, adolescents, and young adults, whether that care is delivered in the home, hospital, long-term care, or respite facility.

Standards for Psychosocial Care for Children with Cancer and Their Families

Models of standardized quality palliative care are also emerging within specific pediatric illness groups, like childhood cancer, via collaborative and multidisciplinary efforts. Recognizing the significant variability in psychosocial services offered to patients in different pediatric oncology settings and the lack of published, comprehensive, evidence-based standards for pediatric psycho-oncology care, pediatric oncology psychosocial professionals collaborated with an interdisciplinary group of experts and stakeholders to develop the first evidence- and consensus-based standards for pediatric psychosocial care.²⁹ As described by the Browns (Box 8.1), this set of 15 Standards for Psychosocial Care for Children with Cancer and Their Families, endorsed by more than 15 professional organizations, was based on a systematic review of relevant literature and rigorous evaluation of the evidence quality.

Standard 13 addresses PPC specifically and recommends (1) early introduction of palliative care concepts regardless of disease status and (2) developmentally appropriate end-of-life care.³⁰ Standard 14, addressing bereavement follow-up care, recommends contact by a member of the family’s healthcare team after a child’s death to assess family needs, identify those at risk for negative psychosocial sequelae, continue care, and provide resources for bereavement support.³¹ These established standards help to ensure that all children with cancer receive essential psychosocial care.

Integrating National Standards/Guidelines from a Quality Perspective

The guidelines just described are not quality measures in and of themselves, yet they provide a valuable foundation and framework for developing such measures and can be a useful tool in QI initiatives for both national projects and individual programs.

While the Standards for Psychosocial Care for Children with Cancer and Their Families²⁹ are a valuable blueprint for clinicians and organizations, additional guidance was needed on best practices regarding how to adopt and implement the standards, with consideration for the heterogeneity of program size and resource availability. As a result, the multidisciplinary working group has provided implementation toolkits for individual cancer site use and guidance on how to evaluate both quality of care and systems change. Accompanying each standard is (1) a Matrix (Institutional Assessment Tool), utilizing a scoring system of 1–5, with 1 reflecting lack of implementation of the standard and 5 reflecting the gold standard (comprehensive care and complete implementation), and (2) Guidelines, providing specific guidance on “how to” improve implementation of each standard (i.e., action items with strategies, along with useful tools and resources) and thus improve each center’s score. These additions have been developed as tools for individual program self-assessment and setting of benchmarks and therefore lay the foundation for QI projects, regardless of treatment setting.³²

For the palliative care standard, for example, the guidelines recommend, among a number of specific strategies, the use of standardized advance care planning (ACP) tools to facilitate early discussions with children and families about goals of care. As such, PPC programs may initiate QI projects to increase the percentage of adolescents undergoing bone marrow transplantation who participate in ACP and who have decisions documented in the EHR. Similarly, the guideline for this standard recommends close collaboration with community-based palliative and hospice providers to honor family preference for location of end-of-life care and to ensure ongoing symptom management. This standard could also inspire QI initiatives to evaluate percentages of patients who die in their preferred location.

Quality Measures in PPC

Moving beyond clinical guidelines or best practices, the PPC community must also identify and validate quality measures specific to PPC and then monitor and assess the quality of care provided to children with life-threatening conditions and their families using those indicators. Quality measures provide definitions of the eligible populations (denominator), rules for determining when the care aligns with the best practices (numerator), and rules for exclusions and outcome interpretation (risk adjustment).⁹ Quality indicators, for example, may include availability of specialized PPC services (including bereavement care), proportion of children suffering from a variety of symptoms, proportion of families with documented discussion of goals of care, proportion of children dying in their preferred location, and proportion of parents satisfied with PPC services.³³

PPC Quality Measure Evolution

Recognizing the need for pediatric-specific quality measures, especially in the domain of end-of-life care, Johnston and colleagues⁹ utilized the NCP Guidelines and the framework from MWM to suggest modifications to quality measures that better meet the needs of dying children and their families. These include measuring death in the preferred location rather than only home versus hospital, developmental and age-appropriate symptom assessment, sibling support training for palliative care programs, and assessment of bereaved parent outcomes. These authors also advocate for establishment of a task force to develop pediatric-appropriate end-of-life measures.

Similarly, other research teams are exploring how and where the existing NCP Guideline domains and criteria should be translated to pediatric-specific measurements of quality. Thienprayoon and colleagues’ research, for example, focused on defining provider priority domains of quality in home-based pediatric hospice and palliative care. Their work recommended the addition of new domains for quality criteria and measurement development, that of Coordination of Care and Coordination of Bereavement.³⁴ Most importantly, there is growing recognition of the need to focus on the development of person-centered measures that ensure that patients and families are key stakeholders in the identification of such measures.^35,36,37

Call to Action: Implementing Quality Measures in PPC Programs

Overcoming the inertia of starting a QI initiative is a significant challenge. The barriers are many: lack of QI knowledge and expertise, overwhelming clinical demands, small team size, inability to identify a project, and insufficient evidence base.³⁸ An important initial step is to ensure the PPC team places value on delivering high-quality care as a core objective of their service. Establishing a culture focused on providing high-quality services will help to set the stage for establishing an effective QI structure in the team. When focused on getting a structure established and starting an initial project, PPC clinicians should consider the following:

Learn the Basics of QI Methodology. A key initial step is to assess the knowledge level of team members in QI methodology. If there is little prior experience or knowledge, then teams should consider identifying an individual who can pursue further education and training in primary QI methodology. Such training might be available through internal institutional quality experts, national organizations such as the Institute for Healthcare Improvement’s Open School,³⁹ or groups specific to PPC such as the Pediatric Palliative Improvement Network. One individual with specific interest or expertise in QI methodology can serve as the quality champion for the program. Consideration should also be given to regular interdisciplinary team education on QI methodologies.⁴⁰

Think Small and Relevant. QI projects need not be intimidating. Projects that are narrow and specific in scope can be fairly easy to implement. For PPC teams with limited capacity outside of clinical work, it is important to focus on a very specific project. Identification of a tension point in the team or a perceived weakness that concerns a team member may aid in considering a project focused around this issue.

Think Interdisciplinary. As the Brown’s story reminds us, a core feature of PPC is the interdisciplinary nature of the service. QI work is not possible without drawing on the skills and expertise of all disciplines on the PPC team. Box 8.3 outlines examples of potential QI structure, process, and outcome projects and the opportunity for PPC interdisicplinary team members’ participation.

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