Low prevalence of palliative care and ethics consultations for children with chronic critical illness

Boss, Renee D.; Falck, Alison; Goloff, Naomi; Hutton, Nancy; Miles, Alison; Shapiro, Miriam C.; Weiss, Elliott Mark; Donohue, Pamela

doi:10.1111/apa.14394

Cited by 19 publications

(14 citation statements)

References 5 publications

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“…These services are increasingly available in hospitals but are under-utilized in the care of children with medical complexity and severe pulmonary disease who require highlycoordinated, on-going care to ensure a high quality of life. 14 Palliative care can be integrated into the PICU, where many patients with severe pulmonary disease and/or home mechanical ventilation receive care. 15 Criteria have been developed to prompt automatic palliative care consultation in adult ICU patients, and similar criteria could be developed for pediatric patients.…”

Section: Casementioning

confidence: 99%

“…Nascent palliative care research and resources for pediatric patients are expanding. These services are increasingly available in hospitals but are under‐utilized in the care of children with medical complexity and severe pulmonary disease who require highly‐coordinated, on‐going care to ensure a high quality of life 14 . Palliative care can be integrated into the PICU, where many patients with severe pulmonary disease and/or home mechanical ventilation receive care 15 .…”

mentioning

confidence: 99%

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The importance of advance care planning for children with chronic respiratory failure

Miles

Turnbull

Sterni

2020

Pediatric Pulmonology

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Section: Casementioning

confidence: 99%

mentioning

confidence: 99%

The importance of advance care planning for children with chronic respiratory failure

Miles

Turnbull

Sterni

2020

Pediatric Pulmonology

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“…For example, palliative care is associated with decreases in PICU use and high-intensity end-of-life care (121). That said, not all children with severe chronic illness who might benefit receive it (122, 123), and there is variation in its receipt across different chronic conditions (124, 125). Continuity strategies, such as primary intensivists and nurses and multidisciplinary meetings, have shown potential benefits in small retrospective, pre/post, and randomized studies ( Fig.…”

Section: Strategies Addressing Needs Of Children With Serious Chronic...mentioning

confidence: 99%

The Child With Severe Chronic Illness in the ICU: A Concise Review

Edwards

Goodman

2022

Critical Care Medicine

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OBJECTIVES:Children with severe chronic illness are a prevalent, impactful, vulnerable group in PICUs, whose needs are insufficiently met by transitory care models and a narrow focus on acute care needs. Thus, we sought to provide a concise synthetic review of published literature relevant to them and a compilation of strategies to address their distinctive needs.DATA SOURCES: English language articles were identified in MEDLINE using a variety of phrases related to children with chronic conditions, prolonged admissions, resource utilization, mortality, morbidity, continuity of care, palliative care, and other critical care topics. Bibliographies were also reviewed. STUDY SELECTION:Original articles, review articles, and commentaries were considered.DATA EXTRACTION: Data from relevant articles were reviewed, summarized, and integrated into a narrative synthetic review. DATA SYNTHESIS:Children with serious chronic conditions are a heterogeneous group who are growing in numbers and complexity, partly due to successes of critical care. Because of their prevalence, prolonged stays, readmissions, and other resource use, they disproportionately impact PICUs. Often more than other patients, critical illness can substantially negatively affect these children and their families, physically and psychosocially. Critical care approaches narrowly focused on acute care and transitory/rotating care models exacerbate these problems and contribute to ineffective communication and information sharing, impaired relationships, subpar and untimely decision-making, patient/family dissatisfaction, and moral distress in providers. Strategies to mitigate these effects and address these patients' distinctive needs include improving continuity and communication, primary and secondary palliative care, and involvement of families. However, there are limited outcome data for most of these strategies and little consensus on which outcomes should be measured. CONCLUSIONS:The future of pediatric critical care medicine is intertwined with that of children with serious chronic illness. More concerted efforts are needed to address their distinctive needs and study the effectiveness of strategies to do so.

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“…For these reasons, early integration of PC with CC is recommended (7). Despite its established benefits, PC utilization for critically ill children remains low with considerable variability across institutions (8,9). This highlights the need to standardize integration and utilization of PC into CC.…”

Section: Introductionmentioning

confidence: 99%

Palliative and Critical Care: Their Convergence in the Pediatric Intensive Care Unit

et al. 2022

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Palliative care (PC) is an integral component of optimal critical care (CC) practice for pediatric patients facing life-threatening illness. PC acts as an additional resource for patients and families as they navigate through critical illness. Although PC encompasses end of life care, it is most effective when integrated early alongside disease-directed and curative therapies. PC primarily focuses on improving quality of life for patients and families by anticipating, preventing and treating suffering throughout the continuum of illness. This includes addressing symptom distress and facilitating communication. Effective communication is vital to elicit value-based goals of care, and to guide parents through patient-focused and potentially difficult decision-making process which includes advanced care planning. A multidisciplinary approach is most favorable when providing support to both patient and family, whether it is from the psychosocial, practical, emotional, spiritual or cultural aspects. PC also ensures coordination and continuity of care across different care settings. Support for family carries on after death with grief and bereavement support. This narrative review aims to appraise the current evidence of integration of PC into pediatric CC and its impact on patient- and family-centered outcomes. We will also summarize the impact of integration of good PC into pediatric CC, including effective communication with families, advanced care planning, withholding or withdrawal of life sustaining measures and bereavement support. Finally, we will provide a framework on how best to integrate PC in PICU. These findings will provide insights on how PC can improve the quality of care of a critically ill child.

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Low prevalence of palliative care and ethics consultations for children with chronic critical illness

Cited by 19 publications

References 5 publications

The importance of advance care planning for children with chronic respiratory failure

The importance of advance care planning for children with chronic respiratory failure

The Child With Severe Chronic Illness in the ICU: A Concise Review

Palliative and Critical Care: Their Convergence in the Pediatric Intensive Care Unit

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