Pediatrics and Palliative Care: 75 Years of Optimizing Health Care Delivery

Commentary From the AAP Section on Hospice and Palliative Medicine

The 75^th anniversary of Pediatrics provides an opportunity for reflection on the evolution of pediatric hospice and palliative medicine. In each quarter-century, Pediatrics publications captured the essence of the need, fruition, and future of this multidisciplinary field. Before the Section on Hospice and Palliative Medicine (SOHPM) was created, the AAP published the statement “Palliative Care for Children.”¹ In 2000, this landmark statement generated awareness of the important role of pediatric palliative care and spurred program development across the country. The SOHPM became a provisional section just as the American Board of Medical Specialties recognized hospice and palliative medicine in 2006. The aspiration of our section is: “Seriously ill infants and children and their families will have their suffering attended to with compassion and expertise.”

Pediatrics and Palliative Care: 75 Years of Optimizing Health Care Delivery

Stephanie Schmitt, MD^1,2; Lisa Humphrey, MD³, OJ Sahler, MD⁴; Jennifer Linebarger, MD, MPH⁵

Affiliations: ¹University of California San Diego, Division of Geriatrics, Gerontology & Palliative Care, San Diego, CA; ²Scripps Health, Division of Palliative Medicine, San Diego, CA; ³The Ohio State University Medical Center, Nationwide Children's Hospital, Director of Hospice and Palliative Medicine, Columbus, OH; ⁴University of Rochester School of Medicine and Dentistry, Golisano Children's Hospital, Division of Pediatric Hematology/Oncology, Rochester, NY; ⁵Children’s Mercy Kansas City, Division of Palliative Care, University of Missouri–Kansas City School of Medicine Kansas City, MO

Highlighted Publications From Pediatrics

• Friedman SB, Chodoff P, Mason JW, Hamburg DA. Behavioral observations on parents anticipating the death of a child. Pediatrics. 1963;32(4):610-625
• Sahler OJ, McAnarney ER, Friedman SB. Factors influencing pediatric interns’ relationships with dying children and their parents. Pediatrics. 1981;67(2):207-216
• Weaver MS, Shostrom VK, Kaye EC, Keegan A, Lindley LC. Palliative care programs in children’s hospitals. Pediatrics. 2022;150(4):e2022057872

The First 25 Years: The Need

It was not rising fatality, but rising longevity that led to a focus on the care of children “with prolonged and fatal illnesses.”² The dawn of the 20^th century was marked by advances in medical technology, intravenous therapies, vaccine development, and the birth of the modern neonatal intensive care unit. With these innovations came decreased infant and child mortality. The death of a child, once expected, became the unexpected.

Dr. Morris Green, an early proponent of family-centered care, published “Care of the Dying Child” in 1967. In his observational case-based reflection, he acknowledged that pediatric death had become an exceptional rather than a common experience. The relative rarity of child mortality prompted him to question the ability of pediatricians to maintain “a high level of competence” in managing “fatal diseases.” He noted the dearth of research, guidance, and supports available for clinicians caring for children with life-limiting illness and warned that “intuition cannot be relied upon, especially in an area so highly charged with anxieties for the responsible adults.” Green called for trained competency in the care of and communication with children at the end of life, as well as a high degree of personalization of care.²

Green’s focus on the experiences of children facing death was preceded by an insightful 1963 observational study of parents by Friedman and colleagues. This study included parents of children being treated for cancer at the National Cancer Institute, who were interviewed and directly observed over the course of their child’s treatment. Investigators assessed parents’ experiences and coping from the moment they learned of the diagnosis to remission, or the “terminal episode and death.”³

Friedman’s publication was seminal in its attempts to scientifically capture caregivers’ cognitive and emotional experiences through serious illness and after the death of a child to better inform physician understanding and engagement. Among the key observations were how parents heard and understood medical information, as well as parental coping behaviors and ever-changing forms of hope. Through this observational study, the authors found common threads, and offered recommendations highlighting the importance of intentional communication and of understanding parental identity—factors including demographics, experiences with death, and social supports—that influence understanding and coping.² Recognizing this individualized understanding of illness is a key element of pediatric palliative care (PPC).

“Each parent of a child with fatal disease reacts to the tragedy in a unique manner, consistent with his particular personality structure, past experiences and individualized meaning and specific circumstances associated with the threatened loss…optimal medical management depends on the physician’s awareness and evaluation of certain aspects of this specific background information.” ³

The Middle 25 Years: The Reality

In 1981, Sahler and colleagues turned the focus onto the physicians providing pediatric end-of-life care. The authors interviewed pediatric resident physicians in the immediate period following the death of a patient in their care. They found some residents struggled to understand the role of neonates in family units, to feel connected to patients with limited ability to communicate, and to prioritize communication with families given other clinical demands. Other residents spoke of finding satisfaction in forming connections with patients and families and emotional distress surrounding the patient’s death, yet no residents held conversations with patients or families about death.⁴

In their discussion, the authors introduced a role for pediatricians with practiced expertise and specialization in end-of-life care. They described multiple potential benefits, such as “adding a degree of objectivity” and “facilitating communication among various levels of staff.” The authors invoked the early makings of the multidisciplinary palliative care team as one that can facilitate family-oriented consultations, maintain longitudinal relationships, and serve as a supportive and educational presence for learners and medical teams.⁴ This article clearly articulated the rationale for early integration of a PPC team in the care of a patient nearing the end of life.

“…the availability of specific medical and paramedical personnel who are interested and skilled in child and family-oriented consultations can help to alleviate the stress of feeling that one must deal alone, in isolation, with dying patients…. Learning to manage the psychologic aspects of illness is different from managing the physiologic aspects. Although neither more nor less rigorous, such learning requires the acquisition of a different set of skills…. If a house officer deserves guidance in diagnosing a terminal illness, does he (sic) not deserve the same guidance in presenting this information to the child and his parents and helping them all to cope with impending death?”⁴

The Last 25 Years: The Fruition and Future

Early calls for PPC captured in Pediatrics formed the foundation of current practice and highlighted the importance of communication about serious illness and the need for specialized services. Research within the field of PPC has evolved over the past 75 years, yet remains a challenging balance, as Mooney-Doyle and colleagues called attention to in their recent Ethics Rounds.⁵ In the last 25 years, Pediatrics publications evolved from observational thought-pieces to cohort and qualitative studies, systematic reviews, and randomized controlled trials (RCTs).

A key theme from the first 50 years was the importance of communication among patients, parents, and staff. Building upon the identified serious illness communication needs, advance care planning (ACP) became a core component of palliative care. Ideally, ACP is both an early and longitudinal communication about a patient’s goals of care facilitating goal-concordant treatment decisions. Publications in Pediatrics called attention to the barriers⁶ and a lack of standard practice⁷ with ACP, followed a decade later by evidence of patient and parent acceptability.^8-9 The 2021 publication of a RCT of ACP at 4 tertiary children’s hospitals affirmed that ACP conversations with children with cancer had a positive impact without increasing caregiver distress.⁹ Not only does the publication affirm the importance of ACP, it showcases an evolution of research opportunities within the field of PPC.

In addition to research about the experiences of, and interventions for, children and families with serious illness, publications in Pediatrics captured the creation of a subspecialty from need-recognition to fruition. In the years following the American Academy of Pediatrics policy statement “Palliative Care for Children,” Pediatrics publications highlighted challenges and needs for program development.^1,10 In 2011, Feudtner and colleagues summarized the palliative patient cohorts at 6 children’s hospitals with established PPC programs. The authors called attention to differences in the pediatric versus adult palliative care patient population, and showed PPC patients exhibit a greater diversity of underlying diagnoses, use medical technology commonly, and demonstrate prolonged survival.¹¹ In 2022, Weaver and colleagues found that 80% of surveyed children’s hospitals offered PPC services.¹²

While affirming the arrival of PPC, Weaver and colleagues remind us of the remaining work to ensure equitable and sustainable program growth. The authors identify the continued need to (1) train more palliative care physicians to meet clinical demand in underserved hospitals, (2) strengthen formalized education to increase exposure of pediatricians-in-training to palliative care, (3) and advocate for sustainable delivery models.¹²

“Development of new PPC programs is an urgent priority to provide optimal care to children with serious illness and their families…. Effective and sustainable PPC care delivery models…are integral to achieving equity and justice for vulnerable patient populations. Findings from this national PPC benchmark study should stimulate…actionable PPC programmatic coverage for children and families…. Further research is needed to broaden knowledge around PPC clinical demand and implementation of efficient care models to support patients, families, healthcare professionals, and communities.”¹²

References

1. American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics. 2000;106(2):351-357
2. Green M. Care of the dying child. Pediatrics. 1967;40(3):492-497
3. Friedman SB, Chodoff P, Mason JW, Hamburg DA. Behavioral observations on parents anticipating the death of a child. Pediatrics. 1963;32:610-625
4. Sahler OJ, McAnarney ER, Friedman SB. Factors influencing pediatric interns’ relationships with dying children and their parents. Pediatrics. 1981;67(2):207-216
5. Mooney-Doyle K, Pyke-Grimm KA, Lanzel AF, et al. Balancing protection and progress in pediatric palliative care research: Stakeholder perspectives. Pediatrics. 2022;150(4):e2022057502
6. Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics. 2012;129(4):e975-e982; doi: 10.1542/peds.2011-2695
7. Lotz JD, Jox RJ, Borasio GD, Führer M. Pediatric advance care planning: A systematic review. Pediatrics. 2013;131(3):e873-e880; doi: 10.1542/peds.2012-2394
8. Orkin J, Beaune L, Moore C, et al. Toward an understanding of advance care planning in children with medical complexity. Pediatrics. 2020;145(3):e20192241; doi: 10.1542/peds.2019-2241
9. Thompkins JD, Needle J, Baker JN, et al. Pediatric advance care planning and families’ positive caregiving appraisals: An RCT. Pediatrics. 2021;147(6):e2020029330; doi: 10.1542/peds.2020-029330
10. Thompson LA, Knapp C, Madden V, Shenkman E. Pediatricians’ perceptions of and preferred timing for pediatric palliative care. Pediatrics. 2009;123(5):e777-e782 doi:10.1542/peds.2008-2721
11. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics. 2011;127(6):1094-1101
12. Weaver MS, Shostrom VK, Kaye EC, Keegan A, Lindley LC. Palliative care programs in children’s hospitals. Pediatrics. 2022;150(4):e2022057872