Pediatric Palliative Care in Infants and Neonates

Carter, Brian S.

doi:10.3390/children5020021

Cited by 67 publications

(69 citation statements)

References 47 publications

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“…Similar studies in the adult population have used the APR‐DRG mortality rating to determine indication for PC . Neonates were excluded due to the disparate cancer presentation and unique considerations in neonatal cancer management . This study complies with the Strengthening the Reporting of Observational Studies in Epidemiology reporting guidelines .…”

Section: Methodsmentioning

confidence: 99%

Palliative care utilization in hospitalized children with cancer

Cheng

Wangmo

2019

Pediatric Blood & Cancer

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Background There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its patterns of use. Methods We analyzed the 2005‐2011 National Inpatient Sample, a representative, cross‐sectional sample of US hospital admissions. Our study cohort comprised 10 960 hospitalizations of children with cancer and high in‐hospital mortality risk. Survey‐weighted regression models were constructed to determine associations of person‐ and hospital‐level characteristics with PC involvement and healthcare costs. Results Overall, 4.4% of hospitalizations included PC involvement. In regression models invoking stepwise variable selection, a shorter length of stay (PC vs no PC; mean: 23.9 vs 32.6 days), solid cancer (solid vs hematologic vs brain cancer; PC use: 7.4% vs 2.8% vs 5.5%), and older age (PC vs no PC; mean: 10.2 vs 8.9 years) were associated with PC use. PC utilization was also associated with lower overall and daily hospital costs. Conclusions One in 20 pediatric inpatients with cancer and high mortality risk receives PC, with differential utilization by socio‐economic groups. These results have significant implications for public health resource allocation and the delivery of pediatric PC as high‐value care. Future research should focus on the development of new tools to help physicians assess when PC is appropriate for their patients.

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Section: Methodsmentioning

confidence: 99%

Palliative care utilization in hospitalized children with cancer

Cheng

Wangmo

2019

Pediatric Blood & Cancer

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“…More than 90% of respondents in the same study felt that their institution would benefit from further education and training in neonatal EOL care. Carter elaborates on PPC for babies in his article [ 19 ] in this special edition.…”

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Friedrichsdorf

Bruera

2018

Children

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Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.

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“…Perinatal teams are structured like adult and pediatric palliative care teams, which usually include medical care providers, social workers, chaplains, respiratory therapists, and lactation consultants. It is recommended that nurses and physicians in these teams be trained in obstetrics and neonatology ( 12 ). Because of improved technology and the earlier diagnoses of genetic anomalies and lethal malformations over the past four decades, expectant couples are now being counseled about the health of their unborn child earlier in the pregnancy.…”

Section: Introductionmentioning

confidence: 99%

Fostering Vicarious Resilience for Perinatal Palliative Care Professionals

et al. 2020

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Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high risk for burnout and compassion fatigue, which can leave healthcare institutions increasingly vulnerable to poor retention, absenteeism, and waning quality of care. The provision of exemplary palliative care requires a cohesive interdisciplinary team of seasoned professionals resilient to daily challenges. In September 2019, the American College of Gynecology, in a committee opinion, published standard of care guidelines for perinatal palliative care. This has created an impetus for exceptional caregiving and a greater demand for both physician and interdisciplinary healthcare provider education, training, and ongoing support that promotes truly beneficent care for pregnant patients confronted with life-limiting fetal conditions. Methods: A scoping review of the research literature was conducted in order to distinguish the barriers and facilitators of professional resiliency in perinatal palliative care. PubMed, Medline, CINAHL, and EBSCO Psychology & Behavioral Sciences Collections were systematically reviewed. Because of the paucity of studies specific to perinatal palliative care, several interviews of nurses and physicians in that field were conducted and analyzed for content distinctly pertaining to personal practices or workplace factors that support or hinder professional resiliency. Results: The research indicated that medical professionals often cite a lack of knowledge, inexperience using effective communication skills related to perinatal palliative care and bereavement, challenges with interdisciplinary collaboration, misconceptions about the role and function of palliative care in the perinatal or neonatal settings, moral distress, and workload challenges as encumbrances to professional satisfaction. Strategic implementation of facility-wide bereavement care training, effective communication modalities, and evidenced-based practical applications are critical components for a thriving perinatal palliative care team. Authentic formal and informal debriefing, peer mentoring, adequate caseloads, robust provider self-care practices, exceptional relational efficacy, and cultural and spiritual humility can foster personal growth and even vicarious resilience for perinatal palliative care professionals. Conclusions: Support should be strategic and multifaceted. The onus to implement salient measures to cultivate resilience in the perinatal palliative caregiver should not be only upon the individuals themselves but also upon prevailing regulatory governing bodies and healthcare institutions.

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Pediatric Palliative Care in Infants and Neonates

Cited by 67 publications

References 47 publications

Palliative care utilization in hospitalized children with cancer

Palliative care utilization in hospitalized children with cancer

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Fostering Vicarious Resilience for Perinatal Palliative Care Professionals

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