Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families

Bogetz, Jori F.; Lemmon, Monica E.

doi:10.1016/j.jpainsymman.2021.01.008

Cited by 17 publications

(11 citation statements)

References 32 publications

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“…46 Up to 40% of children cared for by PPC teams have SNI. 47 The vast majority live with medical technology.…”

Section: Tip 6: Several Chronic Conditions Including Trisomy 13/18 Ca...mentioning

confidence: 99%

“…Because SNI comprises myriad disease states, patterns of decline and length of life are highly variable; prognostic uncertainty and limited empirical evidence complicate how to best counsel their families. 47,48 Although many children with SNI have static encephalopathy, physical decline across SNI conditions can mirror that observed in adult neurologic disorders such as dementia or following traumatic brain injury. Feeding intolerance manifested by retching, vomiting or pain with feeds may occur, prompting reassessment of feeding goals.…”

Section: Tip 6: Several Chronic Conditions Including Trisomy 13/18 Ca...mentioning

confidence: 99%

“…Additionally, children with SNI are at risk for cascading symptoms-feeding intolerance may lead to increased visceral hyperalgesia and autonomic dysfunction, worsening seizures and exacerbating hypertonicity, for example-and careful attention must be paid when assessing symptoms in order to treat perceived suffering. 47,49 For these reasons, children with SNI and their families benefit from ongoing comprehensive PC across all phases of their lives. 47 Tip 9: There are times when the most accurate prognostic approach simply acknowledges uncertainty; rather than offering a specific prognosis, PPC teams should support parents and children as they journey through the proverbial wilderness.…”

Section: Tip 6: Several Chronic Conditions Including Trisomy 13/18 Ca...mentioning

confidence: 99%

“…47,49 For these reasons, children with SNI and their families benefit from ongoing comprehensive PC across all phases of their lives. 47 Tip 9: There are times when the most accurate prognostic approach simply acknowledges uncertainty; rather than offering a specific prognosis, PPC teams should support parents and children as they journey through the proverbial wilderness.…”

Section: Tip 6: Several Chronic Conditions Including Trisomy 13/18 Ca...mentioning

confidence: 99%

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Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children

Bergstraesser

Thienprayoon

Brook

et al. 2021

Journal of Palliative Medicine

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Pediatric palliative care (PPC) is different from palliative care for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with palliative care needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.

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“…46 Up to 40% of children cared for by PPC teams have SNI. 47 The vast majority live with medical technology.…”

Section: Tip 6: Several Chronic Conditions Including Trisomy 13/18 Ca...mentioning

confidence: 99%

Section: Tip 6: Several Chronic Conditions Including Trisomy 13/18 Ca...mentioning

confidence: 99%

Section: Tip 6: Several Chronic Conditions Including Trisomy 13/18 Ca...mentioning

confidence: 99%

Section: Tip 6: Several Chronic Conditions Including Trisomy 13/18 Ca...mentioning

confidence: 99%

See 2 more Smart Citations

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children

Bergstraesser

Thienprayoon

Brook

et al. 2021

Journal of Palliative Medicine

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“…It aims to provide medical, nursing, psychological and social support in accordance with the individual situation of the patient. Although the majority of these patients can be described as “children with medical complexity” (CMC) [ 1 , 2 ], a considerable proportion has an irreversible progressive or a congenital non-progressive neurological impairment [ 3 , 4 , 5 ]. Characteristic clinical examples are severe cerebral palsy from a hypoxic or an ischemic brain injury, congenital encephalopathies, neuromuscular diseases, or progressive metabolic disorders [ 6 , 7 ].…”

Section: Introductionmentioning

confidence: 99%

Lower Respiratory Tract Infections in Pediatric Patients with Severe Neurological Impairments: Clinical Observations and Perspectives in a Palliative Care Unit

et al. 2022

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Pediatric palliative care (PPC) patients with a severe neurologic impairment (SNI) suffer considerable morbidity and increased mortality from lower respiratory tract infections (LRTIs). The indication and choice of antibiotic therapy for bacterial LRTIs are often challenging given the lack of evidence-based treatment recommendations for this vulnerable patient population. We conducted an observational study before the SARS-CoV-2 pandemic in an eight-bed pediatric palliative care inpatient unit. During two years of surveillance, we diagnosed and treated 33 cases of a bacterial LRTI in patients with an SNI; 5 patients were hospitalized with an LRTI more than once. Two patients died from complications due to LRTIs during hospitalization. Three patients (15%) were colonized with multidrug-resistant organisms. An initial antibiotic treatment failed in one-third of the cases; a successful therapy of the LRTI was achieved with broad-spectrum and extended-spectrum penicillins (n = 13; in combination with β-lactamase inhibitors for n = 5 cases), cephalosporins (n = 13: n = 4 second-generation and n = 9 third-generation cephalosporins; in combination with other substances for n = 5 cases), ciprofloxacin (n = 3), and meropenem plus vancomycin (n = 2) or meropenem (n = 1). A respiratory specimen was obtained in 66.7% of cases with P. aeruginosa, E. coli, and K. pneumoniae accounting for the majority of the detected species. In most cases, there was no definite confirmation that the LRTI was caused by the species detected. The diagnostics and treatment of bacterial LRTIs in PPC patients with an SNI are challenging. The lack of controlled studies and the heterogeneity of this population often necessitate an individual approach. This lack of controlled studies may partly be compensated by a set of diagnostic and antibiotic stewardship criteria.

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Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences

Lemmon

Barks

Bernstein

et al. 2022

Annals of Neurology

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Objective We characterize the content and role of prognostic discussion for infants with neurologic conditions. Methods In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid‐cycle qualitative approach to identify and refine themes. Results Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision‐making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty. Interpretation In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision‐making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699–709

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Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families

Cited by 17 publications

References 32 publications

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children

Lower Respiratory Tract Infections in Pediatric Patients with Severe Neurological Impairments: Clinical Observations and Perspectives in a Palliative Care Unit

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences

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