Abstract
P
Success in other medical fields is often described in terms of value—centered on addressing the quadruple aim of improving patient experience, providing better care, lowering costs, and improving provider experience.5,6 These values reflect important tasks for medical institutions and patients alike in improving the quality of care while decreasing cost.7–9 Adult palliative care programs have responded by defining success in terms of outcomes such as hospital utilization, patient quality of life, and even mortality.10–12 These are important markers of the added value of palliative care programs and services.
Defining success in pediatric palliative care (PPC) is more complicated for three major reasons. First, the number of patients is much smaller with ∼50,000 children dying per year and about a quarter-million children living with intensive medical care needs.13,14 Second, the total government healthcare spending for children is minuscule when compared to adult healthcare costs. Third, and more important than the numbers, is the perspectives of patients and families. The death of a child is completely counter to assumptions about life and death—posing unique challenges when families consider goals of care and medical decision making for their seriously ill child. 15
The challenge of defining success is pressing for PPC and impacts junior clinicians starting careers as well as experienced PPC clinicians solidifying lasting foundations for the field. Although the adult palliative care community has taken on the value equation of meeting the quadruple aim, it remains unclear what should be promised in pediatrics. 16 Wanting to meet the broad needs of families with seriously ill children as well as meet organizational pressures is daunting. This article aims to explore important considerations and to provide guidance on how we begin to define success from the perspectives of both junior and expert PPC clinicians.
PPC and Its Alignment with the Quadruple Aim
The field of PPC is growing and offers a wide variety of interventions well matched to support better healthcare for children and their families.17,18 Palliative care provides multi-leveled additional support given the long periods of time our patients live with serious illnesses. PPC teams get to know patients personally by meeting extended family, seeing them at home, and in their communities. We discuss tradeoffs and priorities, given evolving goals of care throughout a child's disease course. We advocate for more or less intervention, establishing care plans based on patients' and families' perspectives about perceived benefits and risks. Palliative care teams also sit with families when children worsen and when children die. We even follow families in bereavement as they attempt to understand the loss of the person most dear to them.
PPC clinicians are stewards of responsible healthcare resource use. We apply “big picture” thinking to individual health problems, while being strong patient advocates. We prioritize what individual patients consider quality of life for themselves and their families. We think about the financial impact of care on our society and work to align care with goals that patients have which include medical, spiritual, and psychosocial interventions.
PPC teams also support other medical staff members. We cultivate compassion for differences of opinion. We listen when it seems like nothing is helping to make a child better and interventions fail. We support providers who have to share difficult news and stop fruitless treatments. We advocate for the role of palliative care throughout a child's disease process regardless of the clinical outcome.
When palliative care promises so many things, it makes it difficult to determine what it shouldn't. As we think about palliative care's ability to address the quadruple aim for children, what should be the limits and what are the limitations?
The Promise of the Quadruple Aim: Internal Worries and External Pressures
Clearly, palliative care is closely aligned with the quadruple aim and with all of its benefits.13,19 Although the majority of studies showing the benefits of palliative care at improving quality of life, decreasing symptom burden, reducing cost, and even prolonging life have been in adults, 10 PPC programs aimed at similar goals are being developed and studied.20–24 Many PPC programs are serving children and their families for extended periods of time (75% of patients and families for over one year) and are working to collaborate with other services throughout healthcare organizations and community systems. 25 Often these programs make connections across various settings to gather together supports for seriously ill children and their families.
All of these benefits and goals are extremely important, but they are also lofty. This begs the question of whether this approach is setting up PPC teams for failure by overpromising and under-delivering, particularly on costs and given PPC teams' limited resources. And what are the other unintentional consequences of trying to meet the quadruple aim in PPC?
Internal worries
The majority of PPC programs have developed in the last 15 years. 22 Many programs have limited staffing and consist of passionate providers doing their best to meet patients' needs without sufficient resources or even dedicated time. Many programs also rely on providers new to the field of PPC. Given these limitations, it is easy to blame ourselves for less-than-perfect patient care. How can we forgive ourselves for a “bad” outcome? How can we accept care that was less than perfect when the stakes of a child's last few hours with his or her family feel so high? How can we be strong enough to support a family's wishes even if they are not aligned with the medical teams' goals, and should we? What happens when we are advocating for things that are expensive or involve limited resources?
These aspects are deeply personal and point to an area ripe for self-reflection. They include worries about self-doubt, perfectionism, and merit. They are routed in the passion for the tenets of palliative care, but put us as clinicians at risk for depersonalization, burnout, and depression. 26 In particular, worries about the quality of care we are providing can lead to burnout without adequate staffing and support mechanisms for PPC providers.
External pressures
External pressures about what success in PPC means depend on local leadership and the culture of organizations and communities. PPC is a young and growing field, and there are many preconceptions held by patients, families, and healthcare providers about what palliative care is and what it entails. 27 Should PPC be about reducing costs? Is palliative care only for children at end of life? Should palliative care support be able to keep children out of the emergency room or prevent hospitalization? Should it mean that children die at home? Should it mean that every child is symptom free? The local leadership and culture surrounding PPC teams influence the ability of teams to meet and/or exceed expectations. Local priorities often determine the supports and benchmarks of a program and can vary depending on practice settings. This variability may put PPC teams at risk for inconsistent goals and unrealistic expectations.
Through the lens of internal worries and external pressures, Table 1 identifies the four areas of the quadruple aim and highlights examples of common challenges for PPC providers. Addressing these issues is critical to enabling PPC clinicians and teams to better understand the potential challenges to their success. Moreover, the field's ability to define its own commitments and priorities can help to further shape benchmarks for success and the long-lasting trajectory of the field.
DNR, do-not-resuscitate order.
Outlining a Pathway to Success: Establishing Core Commitments
By knowing the internal worries and external pressures relevant to the PPC field, we can then begin to formulate ways to move ahead. These ways likely include the following.
Trusting ourselves
Those developing and sustaining PPC programs have to be confident and yet self-aware enough to foster programs that do the “right” things to grow palliative care in their organizations and communities. They must also be tied in with the institutional culture and savvy enough to prevent overextending to address all aspects of the quadruple aim and avoid setting themselves up for burnout. Influencing culture and practice changes throughout an institution or in a community can be extremely overwhelming and slow. Soliciting individual and team feedback can be useful for clarifying expectations. Efforts in self-care, mindfulness, and personal reflection can also help tend to some of these challenges.
Relying on each other
Collaborators in hospital, home, and community settings can help support PPC teams to know how to determine their success. Often members of our own palliative care teams can be instrumental in reflecting on our program's strengths and weaknesses. Utilizing champions locally and experts nationally to reflect on internal worries and external pressures can be helpful and lend insight to teams about how to integrate with local priorities without under- or over-promising. Program input and evaluation from families can also guide PPC teams.
Looking to national organizations and published guidelines
To gain further insight into defining our success in PPC, resources outside of a single institution can be helpful. National palliative care organizations, some of which have pediatric-specific programs, can assist PPC teams. These include the American Academy of Hospice and Palliative Medicine (AAHPM), the Center to Advance Palliative Care (CAPC), Pediatric Academic Societies (PAS), the National Hospice and Palliative Care Organization (NHPCO), the Hospice and Palliative Nurses Association (HPNA), Social Work Hospice and Palliative Care Network (SWHPN), and the American Academy of Pediatrics (AAP). Subspecialty organizations also offer resources and guidance to those working with dual roles in palliative care and other specialties. In fact, there are defined commitments, guidelines, and recommendations in PPC supported by the AAP that can guide clinicians in their work. 28 These core commitments are relevant to the clinical, educational, research, and community domains of practice. The guidelines aim to advocate for families' concerns, foster compassion and respect for others, and enhance the growth of PPC and education. Table 2 shows the relationship between these core commitments and the important domains of defining success in PPC. Notably, much of what is described in these core commitments leaves timelines and costs out of the discussion. In addition to thinking about the quadruple aim, these core commitments can provide general guidance for meaningful successes and high-quality PPC.
AAP, American Academy of Pediatrics.
Deliberately stating what aspects of the quadruple aim the PPC community can faithfully meet is important. This will support the development of national benchmarks to define success in the field and curb internal worries and external pressures going forward for clinicians and developing PPC teams.
Conclusion
Defining value and tackling the quadruple aim are important to healthcare for children. Unique features of PPC make this definition of success more challenging, creating circumstances for internal worries and external pressures. These vulnerabilities put junior clinicians and PPC experts at risk for overpromising and under-delivering. Defining benchmarks for success can be a first step in acknowledging the unique challenges of PPC and bringing us together in discussing these crucial aspects of our field.
Footnotes
Acknowledgments
We thank the exceptional pediatric staff and administrators at Benioff Children's Hospital at the University of California, San Francisco, who support and foster the work of PPC. We also thank Joanne Wolfe, MD, MPH, Director Pediatric Palliative Care Boston Children's Hospital, Division Chief Pediatric Palliative Care Service, Department of Psychosocial Oncology and Palliative Care Dana-Farber Cancer Institute for her insight and initial review of this article.