Ethical Considerations in Critically Ill Neonatal and Pediatric Patients
Ethics; Palliative care; Infant Newborn; Communication; Critical Illness; Critical care; Congenital diaphragmatic hernia
Summary The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting through a better understanding and application of ethical frameworks and communication strategies. We conducted a multidisciplinary panel session at the American Academy of Pediatrics National Conference and Exhibition in the fall of 2022 wherein we explored a myriad of ethical and communication considerations in this unique patient population, with congenital diaphragmatic hernia (CDH) as the congenital anomaly/disease framework. In this review, we will cover state of the art topics in ethics, communication, and palliative care including basic terminology, communication strategies such as trauma-informed communication, establishing/evolving goals of care, futility, medically inappropriate treatment, ethical frameworks, parental discretion, establishing milestones, internal/external intentions, and re-direction of care. These topics will be helpful to many specialties who are involved in the care of critically ill neonates and children including maternal fetal medicine, pediatrics, neonatology, pediatric critical care, palliative care, and pediatric surgery, along with the pediatric surgical subspecialties. We use a theoretical CDH case as an example and include the live audience responses from the interactive session. This primer provides overarching educational principles, as well as practical communication concepts, that can cultivate compassionate multidisciplinary teams, equipped to optimize family-centered, evidence-based compassionate communication and care.
Harting MT; Munson D; Linebarger J; Hirshberg E; Gow KW; Malek MM; Robbins AJ; Turnbull J
Journal of Pediatric Surgery
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpedsurg.2023.02.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpedsurg.2023.02.009</a>
Procedural burden experienced by children with cancer during their terminal hospital admission
acute respiratory failure; adolescent; amputation; article; artificial ventilation; bone marrow biopsy; bone marrow transplantation; brain ventricle peritoneum shunt; cancer palliative therapy; central nervous system tumor; central venous catheter; child; childhood cancer; cohort analysis; craniotomy; debridement; disease burden; excision; fasciotomy; female; heart arrest; heart surgery; hospital admission; human; intestine resection; invasive procedure; laparoscopy; length of stay; leukemia; lobectomy; major clinical study; male; myringotomy; ostomy; pain; priority journal; public health insurance; retrospective study; segmentectomy; sepsis; spine fusion; stem cell transplantation; terminal care; thoracoscopy; thoracotomy; vascular access; ventriculostomy
Background: Children with chronic conditions, including cancer, have been shown to have high-intensity end-of-life care. We assessed the frequency and timing of invasive procedures that children with cancer undergo during their terminal hospital admission (THA).
Corkum K S; Lautz T B; Hebal F N; Rowell E E
Journal of Pediatric Surgery
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpedsurg.2018.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpedsurg.2018.10.007</a>
Esophageal strictures in children with recessive dystrophic epidermolysis bullosa: an 11-year experience with fluoroscopically guided balloon dilatation
Adolescent; Barium; Catheterization; Child; Preschool; Epidermolysis Bullosa; Dystrophica/co [Complications]; Esophageal Stenosis/et [Etiology]; Esophageal Stenosis/th [Therapy]; Female; Humans; Male; Retrospective Studies; Treatment Outcome; 24GP945V5T (Barium); feeding difficulties; surgical intervention; fluoroscopically guided balloon dilatation
BACKGROUND: Recessive dystrophic epidermolysis bullosa (RDEB) is an inherited blistering skin disorder that is associated with significant esophageal strictures, resulting in dysphagia and nutritional failure. Although endoscopically guided balloon dilatation is a widely used treatment, the use of an endoscope carries the risk of oropharyngeal trauma. To minimize this risk, we have eliminated its use. METHOD: We reviewed the charts of all RDEB patients who underwent balloon dilatation for esophageal strictures between August 1993 and March 2005. Balloon dilatation procedures were performed under anesthesia and with fluoroscopic control. RESULTS: We performed 92 dilatations on 25 RDEB patients. Most patients reported immediate relief of symptoms, rapid recovery, and resumption of adequate food intake within 1 day. The mean interval between dilatations was 1 year. Six patients (24%) have required only 1 dilatation, and 1 of these 6 has had a dilatation-free interval of 25 months. One patient with a history of multiple dilatations has remained dilatation-free for 5 years. No procedure-related complications have occurred. CONCLUSIONS: Fluoroscopically guided balloon dilatation is a gentle, safe, effective, and repeatable technique that should be considered as a first line of treatment.
Azizkhan R G; Stehr W; Cohen A P; Wittkugel E; Farrell M K; Lucky A W; Hammelman B D; Johnson N D; Racadio J M
Journal of Pediatric Surgery
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpedsurg.2005.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpedsurg.2005.10.007</a>
Pain Management in the Pediatric Palliative Care Population
PURPOSE: The purpose of this integrative review was to identify, review, synthesize, and analyze the current literature related to pain management in the pediatric palliative care population from infancy through adolescence. METHODS: The literature was searched for the terms palliative, pediatric, and pain in PubMed, PsycINFO, Cumulative Index to Nursing and Allied HeALTH LITERATUre (CINAHL) Complete, and Google Scholar. The search was limited to papers in English that had been published from January 1, 2005, to December 31, 2016. RESULTS: These searches resulted in 918 articles, of which 29 met inclusion criteria. These 29 articles were reviewed and reported. Four broad themes emerged: patient and family experience, pain assessment, pharmacological pain management, and nonpharmaceutical interventions. CONCLUSIONS: Gaps in current research have been identified, such as investigating pediatric pain scales for the palliative care population and new complementary and alternative medical therapy and other interventions. More research is needed to bring innovative pain management interventions to the attention of pediatric caregivers.
Nordin A; Coleman A; Shi J; Wheeler K; Xiang H; Kenney B
Journal of Pediatric Surgery
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jnu.12389" target="_blank" rel="noreferrer noopener">10.1111/jnu.12389</a>
Pulmonary metastasectomy in pediatric/adolescent patients with synovial sarcoma: an institutional review
adolescent; Child; Female; Humans; infant; retrospective studies; Survival Rate; Young Adult; Treatment Outcome; Lung Neoplasms; Preschool; Metastasectomy; Reoperation; Sarcoma; Synovial
PURPOSE: Synovial sarcoma (SS) often metastasizes to the lung; however, the indications for and outcomes of pulmonary metastasectomy have not been evaluated in pediatric/adolescent patients. METHODS: The records of pediatric patients (age <22years) with pathologically confirmed SS and pulmonary metastasis treated between June 1971 and May 2011 at our institution were retrospectively reviewed for the number and type of surgical metastasectomies, tumor characteristics, and survival outcomes. RESULTS: Forty-one patients (mean age: 15.9years) were identified and 31 (76%) underwent at least one metastasectomy. Seventy-two resections (range, 1-8/patient) were performed. Two- and 5-year survival rates after metastasis diagnosis were 65% and 24% for patients who underwent metastasectomy. Patients who did not undergo a metastasectomy survived no more than 2years from the diagnosis of pulmonary disease (P<0.001). Longer time to progression after primary tumor resection (>1year) and complete resection of pulmonary disease correlated with greater OS (P=0.02 and P<0.001, respectively). Palliative debulking did not improve OS. Survival was unaffected by tumor histological subtype, bilateral pulmonary disease, number of surgical resections, or number and size of resected metastatic lesions. CONCLUSION: Pulmonary metastasectomy may be associated with improved survival in pediatric/adolescent patients with SS and pulmonary metastases if complete resection is achieved.
2013-04
Stanelle EJ; Christison-Lagay ER; Wolden SL; Meyers PA; La Quaglia MP
Journal Of Pediatric Surgery
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpedsurg.2012.09.042" target="_blank" rel="noreferrer">10.1016/j.jpedsurg.2012.09.042</a>
Quantitative and qualitative analysis of gastroesophageal reflux after percutaneous endoscopic gastrostomy
Child; Female; Humans; Male; Hydrogen-Ion Concentration; Acute Disease; quality of life; Preschool; Enteral Nutrition/methods; Weight Gain; Monitoring; Endoscopy; Airway Obstruction/diagnosis; Gastroesophageal Reflux/epidemiology/etiology/therapy; Gastrointestinal/adverse effects/methods; Gastrostomy/adverse effects/methods; Nervous System Diseases/rehabilitation; Physiologic/methods/statistics & numerical data; Postoperative Complications/diagnosis/epidemiology/etiology; Vomiting/diagnosis
BACKGROUND/PURPOSE: Percutaneous endoscopic gastrostomy (PEG) is of great benefit to a defined population of children, but gastrostomy has been implicated in causation or exacerbation of gastroesophageal reflux (GER). The aim of this study was to quantitatively and qualitatively analyze the effect of PEG on GER. METHODS AND MATERIAL: Sixty-four children mean age 6.7 +/- 4.2 years, most of whom were impaired neurologically were evaluated for GER after PEG between 1998 and 2000. Twenty-four-hour pH monitoring was used for quantitative assessment. Qualitative analysis was by interview to record the following: vomiting, choking, chest infection, and weight gain. RESULTS: Twenty-four hour pH monitoring was performed 9.4 +/- 1.2 weeks after PEG. Patients underwent follow-up for 18 +/- 6 months. Seventy-two percent who did not have reflux before PEG remained reflux free. Fourteen percent who had GER before PEG continued to have reflux (P .05). Six percent of patients with preexisting GER improved post-PEG. Of the 14 patients (22%) who had or continued to have reflux after PEG, 11 of 14 (79%) underwent antireflux surgery, and 21% were managed successfully by intensive medical treatment and change of feeding regimen. Only 6% experienced difficulties and complications with the device. Forty-eight percent of patients did not vomit pre- or postoperation. In 16%, vomiting improved post-PEG, whereas 14% experienced minor deterioration (1 to 2 vomits per month). Major deterioration was experienced by 22%. Weight gain occurred in 77%, and in 23% there was no loss of weight. There was an overall improvement in quality of life in 88% after PEG. Overall improvement in quality of life post-PEG, post-antireflux surgery and post-intensive medical management for pathologic GER was 94%. CONCLUSIONS: (1) PEG did not precipitate or exacerbate GER quantitatively or qualitatively in the majority of children. (2) A normal 24-hour pH study predicted a favourable outcome after PEG. (3) An abnormal preoperation pH study predicted persistence or worsening reflux after PEG, but not all of these patients required an antireflux procedure. (4) GER is not a contraindication to PEG, the overall benefits of which outweigh the risks.
2002
Samuel M; Holmes K
Journal Of Pediatric Surgery
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1053/jpsu.2002.30267" target="_blank" rel="noreferrer">10.1053/jpsu.2002.30267</a>
Neostigmine for the treatment of pediatric acute colonic pseudo-obstruction
Child; Humans; Male; Risk Factors; Preschool; Cholinesterase Inhibitors/therapeutic use; Colonic Pseudo-Obstruction/drug therapy/etiology; Neostigmine/therapeutic use
Acute colonic pseudo-obstruction (ie, Ogilvie's syndrome) is an uncommon but serious condition in the pediatric population. Definitive management traditionally has consisted of endoscopic decompression. Recent studies have documented the effectiveness of neostigmine as a pharmacologic alternative to mechanical decompression. To date, however, this literature has focused exclusively on the adult population. The authors present the first reported case of the successful administration of neostigmine to treat acute colonic pseudo-obstruction in a child.
2002
Gmora S; Poenaru D; Tsai E
Journal Of Pediatric Surgery
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1053/jpsu.2002.35438" target="_blank" rel="noreferrer">10.1053/jpsu.2002.35438</a>