Whispers in the waiting room
waiting room; anticipatory grief; article; child; clinician; disability; family; human; intensive care unit; life sustaining treatment; longevity; newborn period; palliative therapy; parent; watchful waiting
Kim, aged 3 years, lies asleep, waiting for a miracle. Outside her room, the nurses on the night shift pad softly through the half-lighted corridors, stopping to count breaths, take pulses, or check the intravenous pumps. In the morning, Kim will have her heart fixed. She will be medicated and wheeled into the operating suite. Machines will take on the functions of her body: breathing and circulating blood. The surgeons will place a small patch over a hole within her heart, closing off a shunt between her ventricles that would, if left open, slowly kill her. Kim will be fine if the decision to operate on her was correct; if the surgeon is competent; if that competent surgeon happens to be trained to deal with the particular anatomic wrinkle that is hidden inside Kim's heart; if the blood bank cross-matched her blood accurately and delivered it to the right place; if the blood gas analysis machine works properly and on time; if the suture does not snap; if the plastic tubing of the heart-lung machine does not suddenly spring loose; if the recovery room nurses know that she is allergic to penicillin; if the "oxygen" and "nitrogen" lines in the anesthesia machine have not been reversed by mistake; if the sterilizer temperature gauge is calibrated so that the instruments are in fact sterile; if the pharmacy does not mix up two labels; and if when the surgeon says urgently, "Clamp, right now," there is a clamp on the tray. If all goes well, if ten thousand "ifs" go well, then Kim may sing her grandchildren to sleep some day. If not, she will be dead by noon tomorrow. If Kim were an astronaut, strapped into her seat at the top of some throbbing rocket, the crowd assembled would hold their breath in the morning Florida sun. "How can it possibly work?" they would whisper. "How many parts are there in that machine? A million? What if one fails? My toaster fails. Please let it all work right." The machine would bellow smoke, the gantry fall away, and slowly the monster would rise, Kim on top. If it worked, they would cheer. "A miracle," they would shout, in awe that the millions of tiny lines of effort, the millions of tiny lines of cause and effect, from job shops in Ohio and laboratories in Pasadena, criss-crossing through time and space, could converge so magnificently in a massive, gleaming rocket launched exactly right. Perfect. If it failed, they would cry. So would the rocket's makers, who had done their very best. No one wanted it to end this way. Poor Kim. What was the trouble? What went wrong? Why? The lines of cause will converge around Kim in the morning as she wheels toward the operating room. Thousands upon thousands of elements weaving a basket to hold her safely, all hope. No crowd holds its breath tonight; but wouldn't they if they knew? From: Berwick DM. Controlling variation in health care: a consultation from Walter Shewhart. Medical Care 1991; 29: 1212-1225.
Cooper MS; McCallum Z; Antolovich G
Brain
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/10.1093/brain/awad333" target="_blank" rel="noreferrer noopener">10.1093/brain/awad333</a>
Training perinatal nurses in palliative communication by using scenario-based simulation: A quasi-experimental study
interpersonal communication; nurse; palliative therapy; quasi experimental study; simulation; Taiwan; training; article; communication skill; continuing education; controlled study; delivery room; experimental design; female; health care personnel; human; intensive care unit; learning; newborn; purposive sample; registered nurse; structured questionnaire; teaching; terminal disease; therapy
Aim: This study aimed to assess the impact of two educational modules on enhancing the communication confidence, competence and performance of perinatal nurses in the context of palliative care. Background: Concerns have arisen regarding the preparedness of perinatal nurses in delivering palliative care, especially in terms of deficiencies in communication skills and negative attitudes toward making life-support decisions for parents facing neonates with terminal conditions. Bridging this gap necessitates improved perinatal palliative care education for healthcare providers. Research has shown that simulation-based teaching effectively enhances procedural competence, communication skills and confidence among healthcare professionals. However, comprehensive curricula focusing on perinatal palliative communication remain limited. Design: This study used a quasi-experimental design employing a two-group repeated measure approach. It involved a purposive sample of 79 perinatal nurses from a hospital in northern Taiwan. Methods: A palliative communication course specifically designed for registered nurses in perinatal units was developed. Participants were allocated to either the experimental group (Scenario-Based Simulation, SBS) or the control group (traditional didactic lecture). Communication confidence and competence were assessed before and immediately after the course through structured questionnaires. Learning satisfaction was collected post-intervention and participants underwent performance evaluation by standardized parents one week later. Results: A significant training gap in palliative care exists among nurses in OB/GYN wards, delivery rooms and neonatal critical care units, highlighting the need for continuing education. All 79 participants completed the training course. Following the intervention, nurses in the SBS group (n=39) exhibited significant improvements in self-reported confidence (p <0.05), competence (p <0.01) and performance (p <0.001) in neonatal palliative communication compared with the traditional didactic lecture group (n=40). The SBS group also received higher satisfaction ratings from nurse learners (p <0.001). Conclusions: The research findings support scenario-based simulation as a more effective educational approach compared with traditional didactic lectures for enhancing communication confidence and competence. These results were further reinforced by evaluation from standardized patients, highlighting the value of direct feedback in enhancing nurses' performance. Tailoring SBS designs to diverse nursing contexts and incorporating a flipped approach can further enrich the overall learning experience. Given its high effectiveness and positive reception, we recommend integrating this educational module into palliative care training programs for perinatal nurses.
Chen HW; Cheng SF; Hsiung Y; Chuang YH; Liu TY; Kuo CL
Nurse Education in Practice
2024
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.nepr.2024.103885" target="_blank" rel="noreferrer noopener">10.1016/j.nepr.2024.103885</a>
Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; pediatric intensive care unit; school child; consultation; clinical feature; practice guideline; surgery; adolescent; infant; critically ill patient; intensive care unit; electronic medical record; traumatic brain injury; toddler; child abuse; total quality management; special situation for pharmacovigilance; childhood trauma; injury
The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric trauma patients has not been studied. We sought to identify patients who received the consultation and develop criteria for patients who would benefit from these resources at our institution. Methods: The institutional pediatric trauma registry was queried to identify all admissions age 0-17 years old to the pediatric intensive care unit (PICU) or trauma ICU (TICU) from 2014 to 2021. Demographic and clinical features were obtained from the registry. Electronic medical records were reviewed to identify and review consultations to the ComPASS team. A clinical practice guideline (CPG) for palliative care consultations was developed based on the TQIP guideline and applied retrospectively to patients admitted 2014-2021. The CPG was then prospectively applied to patients admitted from March through November 2022. Results: A total of 399 patients were admitted to the PICU/TICU. There were 30 (7.5%) deaths, 20 (66.7%) within 24 hours of admission. Palliative care consultations were obtained in 21 (5.3%). Of these, 10 (47.6%) patients were infants/toddlers <age 2 years, all had traumatic brain injury, 3 (14.3%) were for suspected child abuse, and many were for "goals of care" or family meetings. When the CPG was applied retrospectively, 109 (27.3%) patients met criteria for consultation. After 8 months of prospective implementation of this CPG, palliative care consultation was obtained in 25% (7 of 28) of pediatric trauma patients admitted to the ICU. Conclusion: Our results demonstrate underused potential of the palliative care team to impact the hospital course of critically ill pediatric trauma patients. Ongoing studies will analyze the utility of CPG implementation for early involvement of palliative services in critically ill pediatric trauma patients. Level of evidence: Level III (retrospective cohort).
Goswami J; Baxter J; Schiltz BM; Elsbernd TA; Arteaga GM; Klinkner DB
Trauma Surgery and Acute Care Open
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/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener">10.1136/tsaco-2023-001143</a>
Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; intensive care unit; assisted ventilation; pediatric intensive care unit; intensive care; therapy; pediatrician; prevalence; functional status; disability; special situation for pharmacovigilance
Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. Results: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). Conclusion: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support.
Duval C; Porcheret F; Toulouse J; Alexandre M; Roulland C; Viallard ML; Brossier D
Archives de Pediatrie
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.arcped.2023.09.014" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.09.014</a>
Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
child; article; cohort analysis; female; human; male; quality of life; palliative therapy; Ventilators, Mechanical; tracheostomy; content analysis; pilot study; respiratory failure; adolescent; decision making; intensive care unit; semi structured interview; pediatric patient; length of stay; counseling; artificial ventilation; home ventilation; Question Prompt List
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision. Results: We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options. Conclusions: The HomeVENT pilot was feasible and acceptable. Innovation: This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.
Boss RD; Vo HH; Jabre NA; Shepard J; Mercer A; McDermott A; Lanier CL; Ding Y; Wilfond BS; Henderson CM
PEC Innovation
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.pecinn.2023.100173" target="_blank" rel="noreferrer noopener">10.1016/j.pecinn.2023.100173</a>
Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions
terminal care; analysis of variance; article; Belgium; child; cohort analysis; comfort; drawing; female; financial management; follow up; general practitioner; human; intensive care unit; major clinical study; male; nationality; palliative therapy; phlebotomy; physician; retrospective study; sibling; surgery; Terminal Care; total quality management
Abstract Objective: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. Study design: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. Results: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit. Conclusions: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.
Piette V; Smets T; Deliens L; van Berlaer G; Beernaert K; Cohen J
The Journal of Pediatrics
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.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.10.037</a>
How Do Hospitalised Children Die? The Context of Death and End-Of-Life Decision-Making
intensive care unit; Child; child; Decision Making; article; controlled study; female; human; major clinical study; male; resuscitation; retrospective study; palliative therapy; observational study; advance care planning; documentation; Only Child; nervous system; life sustaining treatment; cardiovascular disease; respiratory tract disease; infant; drug withdrawal; demographics; medical record; hospitalized child; pediatric patient; decision making; childhood mortality; treatment withdrawal
Serrano-Pejenaute I; Carmona-Nunez A; Zorrilla-Sarriegui A; Martin-Irazabal G; Lopez-Bayon J; Sanchez-Echaniz J; Astigarraga I
Journal of Paediatrics and Child Health
2023
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<a href="http://doi.org/10.1111/jpc.16354" target="_blank" rel="noreferrer noopener">10.1111/jpc.16354</a>
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Journal of Pediatric Intensive Care
2023
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<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</a>
Perceptible Signs of End of Life in Pediatric Intensive Care Patients
Bereavement; Death;End-of-Life Care; Intensive Care Unit; Parents; Pediatric
Background: How children die in pediatric intensive care units (PICUs) has been poorly described, and support for parents during this traumatic experience could be improved. Better information on perceptible signs of the end of life (EOL) in children may help mitigate the trauma. Objective: To describe the most common perceptible EOL signs in PICU patients. Methods: A prospective study in a PICU. Health care providers observed 28 children expected to die and noted the perceptible signs. Results: The most common perceptible signs were desaturation and bradycardia. Twenty-seven patients had at least one change in physical appearance. Gasping was noted in 12 patients. Conclusion: Perceptible signs of the EOL were different from those reported in children dying in other units or in adults. Sharing information about signs of EOL with parents may prepare them and enable them to better support their child.
Pierron C; Levy M; Mattioni V; Poncelet G; Le Bourgeois F
Journal of Palliative Medicine
2022
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/10.1089/jpm.2021.0582" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0582</a>
Predicting Time to Death After Withdrawal of Life-Sustaining Treatment in Children
Decision Support Techniques; Intensive Care Unit; Machine Learning; Pediatric; Terminal Care; Tissue and Organ Procurement
Accurately predicting time to death after withdrawal of life-sustaining treatment is valuable for family counseling and for identifying candidates for organ donation after cardiac death. This topic has been well studied in adults, but literature is scant in pediatrics. The purpose of this report is to assess the performance and clinical utility of the available tools for predicting time to death after treatment withdrawal in children. DATA SOURCES: Terms related to predicting time to death after treatment withdrawal were searched in PubMed and Embase from 1993 to November 2021. STUDY SELECTION: Studies endeavoring to predict time to death or describe factors related to time to death were included. Articles focusing on perceptions or practices of treatment withdrawal were excluded. DATA EXTRACTION: Titles, abstracts, and full text of articles were screened to determine eligibility. Data extraction was performed manually. Two-by-two tables were reconstructed with available data from each article to compare performance metrics head to head. DATA SYNTHESIS: Three hundred eighteen citations were identified from the initial search, resulting in 22 studies that were retained for full-text review. Among the pediatric studies, predictive models were developed using multiple logistic regression, Cox proportional hazards, and an advanced machine learning algorithm. In each of the original model derivation studies, the models demonstrated a classification accuracy ranging from 75% to 91% and positive predictive value ranging from 0.76 to 0.93. CONCLUSIONS: There are few tools to predict time to death after withdrawal of life-sustaining treatment in children. They are limited by small numbers and incomplete validation. Future work includes utilization of advanced machine learning models.
Winter MC; Ledbetter DR
Critical Care Explorations
2022
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<a href="http://doi.org/10.1097/cce.0000000000000764" target="_blank" rel="noreferrer noopener">10.1097/cce.0000000000000764</a>
At the End of Life: Pediatric Palliative Care Can Make a Difference in Caring for the Child and Family
agitation; anxiety; cancer patient; care behavior; child; conference abstract; controlled study; demography; dyspnea; fear; female; hospital mortality; human; intensive care unit; irritability; leukemia; major clinical study; male; middle income country; pain; palliative therapy; pediatric patient; quasi experimental study; retrospective study; school child; seizure; skill; social needs; terminal care; ward
Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with cancer during the end-of-life period who receive general palliative care or pediatric palliative care in low- and middle-income countries. Method(s): We conducted a retrospective quasi-experimental study between January 2013 and December 2020 with deceased pediatric cancer patients. Demographic and clinical variables were collected to describe end-of-life care received before (2013-2017) by general palliative care team and after (2018-2020) the creation of a pediatric palliative care team Results: A total of 180 pediatric patients were evaluated at the end of life (100 between 2013-2017 and 80 between 2018-2020). The median age was 11 years, regardless of sex. Half of the patients had a diagnosis of leukemia (49.8%), 52.7% receive palliative treatment for their oncological condition. Regarding symptoms, 72 hours before death, pain treatment was documented for 52.2% of the patients. Other signs and symptoms, such as dyspnea, seizures, agitation, and irritability, were present, with no differences between groups; however, it was noted that during PPC interventions, there was a significant reduction in anxiety or fear of end of life, we observed a greater number of interventions by the psychosocial professionals and also there was an increase in the number of patients who died in the hospital ward and a decrease in the number of patients who died in the intensive care unit. Conclusion(s): Pediatric palliative care requires special knowledge and skills, the provision of PPC for children with cancer allows patients and their families to receive support that alleviates the physical, emotional and social needs that arise from a life-limiting illness and finally receive high-quality end-of-life care.
Cuervo M; Garcia X; Molina K; Claros A; Bolanos J; Alvarez T; Cleves D
Pediatric Blood and Cancer
2022
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<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
Postdischarge Health Resource Use in Pediatric Survivors of Prolonged Mechanical Ventilation for Acute Respiratory Illness
Child; Infant; Pediatrics; Respiration; Aftercare; Pneumonia; Critical illness; Discharge; Health resources; Healthcare; Intensive care unit; Respiratory distress syndrome
We aimed to identify characteristics associated with postdischarge health resource use in children without medical complexity who survived an episode of prolonged mechanical ventilation for respiratory illness. We hypothesized that longer durations of mechanical ventilation, noncomplex chronic conditions, and severe acute respiratory distress syndrome (ARDS) would be associated with readmission or an Emergency Department (ED) visit. In this retrospective cohort, we evaluated children without a complex chronic condition who survived a respiratory illness requiring ≥3 days of mechanical ventilation and who had insurance eligibility within the Colorado All Payers Claims Database. We used insurance claims to characterize health resource use and multivariable logistic regression to identify characteristics associated with readmission or an ED visit during the postdischarge year. We evaluated 82 children, median age 12.8 months (interquartile range [IQR]: 4.0-24.1), 20 (24%) with a noncomplex chronic condition and 62 (76%) without any chronic conditions. Bronchiolitis (60%) and pneumonia/aspiration pneumonitis (17%) were the most common etiologies of respiratory failure and 47 (57%) patients had severe ARDS. Forty-six (56%) patients had an ED visit or readmission. Among the 18 readmitted patients, 16/18 (89%) readmissions were for respiratory illness. Forty (49%) patients had ≥2 outpatient pulmonary visits and 45 (55%) filled a pulmonary medication prescription. In analyses controlling for age, illness severity and mechanical ventilation duration, severe ARDS was predictive of ED visit or readmission (odds ratio [OR]: 5.53 [95% confidence interval [CI]: 1.79, 19.09]). Children who survive prolonged mechanical ventilation for respiratory disease experience high rates of postdischarge health resource use, particularly those surviving severe ARDS.
Vo M; Miller K; Bennett TD; Mourani PM; LaVelle J; Carpenter TC; Scott Watson R; Pyle L L; Maddux AB
Pediatric Pulmonology
2022
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/10.1002/ppul.25934" target="_blank" rel="noreferrer noopener">10.1002/ppul.25934</a>
The Child With Severe Chronic Illness in the ICU: A Concise Review
Children; Chronic illness; Intensive care unit; Review
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. CONCLUSION(S): 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. Copyright © by 2022 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.
Edwards JD; Goodman DM
Critical Care Medicine
2022
<a href="http://doi.org/10.1097/CCM.0000000000005512" target="_blank" rel="noreferrer noopener">10.1097/CCM.0000000000005512</a>
Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18
care behavior; child; child protection; controlled study; Edwards syndrome; family counseling; grounded theory; intensive care unit; pain; palliative therapy; patient education; pediatrics; personnel management; practice guideline; son
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.
Szabat M
Nursing inquiry.
2020
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/nin.12341" target="_blank" rel="noreferrer noopener">10.1111/nin.12341</a>
Comfort-holding in critically ill children: a scoping review
intensive care unit; pediatrics; critical care; delirium; comfort-holding; non-pharmacological therapy
PURPOSE: To understand and summarize the breadth of knowledge on comfort-holding in pediatric intensive care units (PICUs). SOURCES: This scoping review was conducted using PRISMA methodology. A literature search was conducted in MEDLINE, EMBASE, PsycINFO, CINAHL, and the Cochrane CENTRAL Register of Controlled Trials. Search strategies were developed with a medical librarian and revised through a peer review of electronic search strategies. All databases were searched from inception to 14 April 2020. Only full-text articles available in English were included. All identified articles were reviewed independently and in duplicate using predetermined criteria. All study designs were eligible if they reported on comfort-holding in a PICU. Data were extracted independently and in duplicate. PRINCIPAL FINDINGS: Of 13,326 studies identified, 13 were included. Comfort-holding was studied in the context of end-of-life care, developmental care, mobilization, and as a unique intervention. Comfort-holding is common during end-of-life care with 77.8% of children held, but rare during acute management (51% of children < three years, < 5% of children ≥ three years). Commonly reported outcomes included child outcomes (e.g., physiologic measurements), safety outcomes (e.g., accidental line removal), parent outcomes (e.g., psychological symptoms), and frequency of holding. CONCLUSION: There is a paucity of literature on comfort-holding in PICUs. This scoping review identifies significant gaps in the literature, including assessment of child-based outcomes of comfort-holding or safety assessment of comfort-holding, and highlights core outcomes to consider in future evaluations of this intervention including child-based outcomes, parent-based outcomes, and safety of the intervention.
Lee LA; Moss SJ; Martin DA; Rosgen BK; Wollny K; Gilfoyle E; Fiest KM
Canadian Journal of Anesthesia
2021
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/10.1007/s12630-021-02090-3" target="_blank" rel="noreferrer noopener">10.1007/s12630-021-02090-3</a>
Prospective, phenotype-driven selection of critically ill neonates for rapid exome sequencing is associated with high diagnostic yield
Aged; Critical Illness; exome sequencing; Exome/genetics; Genetic Testing; Humans; Infant; Infant Newborn; intensive care unit; neonates; Phenotype; Prospective Studies; Whole Exome Sequencing
PURPOSE: To investigate the impact of rapid-turnaround exome sequencing in critically ill neonates using phenotype-based subject selection criteria. METHODS: Intensive care unit babies aged <6 months with hypotonia, seizures, a complex metabolic phenotype, and/or multiple congenital malformations were prospectively enrolled for rapid (<7 day) trio-based exome sequencing. Genomic variants relevant to the presenting phenotype were returned to the medical team. RESULTS: A genetic diagnosis was attained in 29 of 50 (58%) sequenced cases. Twenty-seven (54%) patients received a molecular diagnosis involving known disease genes; two additional cases (4%) were solved with pathogenic variants found in novel disease genes. In 24 of the solved cases, diagnosis had impact on patient management and/or family members. Management changes included shift to palliative care, medication changes, involvement of additional specialties, and the consideration of new experimental therapies. CONCLUSION: Phenotype-based patient selection is effective at identifying critically ill neonates with a high likelihood of receiving a molecular diagnosis via rapid-turnaround exome sequencing, leading to faster and more accurate diagnoses, reducing unnecessary testing and procedures, and informing medical care.
Gubbels CS; VanNoy GE; Madden JA; Copenheaver D; Yang S; Wojcik MH; Gold NB; Genetti CA; Stoler J; Parad RB; Roumiantsev S; Bodamer O; Beggs AH; Juusola J; Agrawal PB; Yu TW
Genetics in Medicine
2020
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/10.1038/s41436-019-0708-6" target="_blank" rel="noreferrer noopener">10.1038/s41436-019-0708-6</a>
Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18
article; care behavior; child; child protection; controlled study; Edwards syndrome; family counseling; female; grounded theory; human; intensive care unit; male; pain; palliative therapy; patient education; pediatrics; personnel management; practice guideline; son
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.
Szabat M
Nursing inquiry
2020
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/nin.12341" target="_blank" rel="noreferrer noopener">10.1111/nin.12341</a>
High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital database
adolescent; adolescents; adult; article; cancer; cancer chemotherapy; cancer diagnosis; cancer patient; child; children; cohort analysis; controlled study; emergency care; emergency ward; end of life; female; France; hematologic malignancy; hospitalization; human; intensive care unit; major clinical study; male; multicenter study; outcome assessment; palliative care; palliative therapy; retrospective study; terminal care; time of death; young adult; young adults
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the rates of HI-EOL care in this population and to determine patient- and hospital-related predictors of HI-EOL from the French national hospital database. Method(s): This was a population-based, retrospective study of a cohort of patients aged 0 to 25 years at the time of death who died at hospital as a result of cancer in France between 2014 and 2016. The primary outcome was HI-EOL care, defined as the occurrence of >=1 chemotherapy session <14 days from death, receiving care in an intensive care unit >=1 time, >1 emergency room admission, and >1 hospitalization in an acute care unit in the last 30 days of life. Result(s): The study included 1899 individuals from 345 hospitals; 61.4% experienced HI-EOL care. HI-EOL was increased with social disadvantage (adjusted odds ratio [AOR], 1.30; 95% confidence interval [CI], 1.03-1.65; P =.028), hematological malignancies (AOR, 2.09; 95% CI, 1.57-2.77; P <.001), complex chronic conditions (AOR, 1.60; 95% CI, 1.23-2.09; P =.001) and care delivered in a specialty center (AOR, 1.70; 95% CI, 1.22-2.36; P =.001). HI-EOL was reduced in cases of palliative care (AOR, 0.31; 95% CI, 0.24-0.41; P <.001). Conclusion(s): A majority of children, adolescents, and young adults experience HI-EOL care. Several features (eg, social disadvantage, cancer diagnosis, complex chronic conditions, and specialty center care) were associated with HI-EOL care. These findings should now be discussed with patients, families, and professionals to define the optimal EOL. Copyright © 2019 American Cancer Society
Revon-Riviere G; Pauly V; Baumstarck K; Bernard C; Andre N; Gentet J C; Seyler C; Fond G; Orleans V; Michel G; Auquier P; Boyer L
Cancer
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/10.1002/cncr.32035" target="_blank" rel="noreferrer noopener">10.1002/cncr.32035</a>
Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric study
death; child; female; human; major clinical study; male; palliative therapy; controlled study; conference abstract; prospective study; caregiver; clinical research; drug therapy; France; gastrostomy; history; intensive care unit; new drug; noninvasive ventilation; nusinersen; nutrition supplement; physician; sedation; sedative agent; standardization; Werdnig Hoffmann disease
Introduction: This National Hospital Clinical Research Program (PHRC) was conducted in France between 2012 and 2016 to depict palliative practices in spinal muscular atrophy type 1 (SMA-1). New drugs (Nusinersen) have been developed and may modify its natural history. We thus present data about supportive care for patients included in that PHRC, comparing them to patients not included concomitantly. Patients and Methods: Supportive care data (enteral nutrition, non-invasive ventilation [NIV], sedation), age and place of death were collected prospectively from a specific health-book and a survey about conditions of death for the patients included in the PHRC and retrospectively by questioning physicians of the French Pediatric Neuromuscular Network for the other patients, some of them receiving Nusinersen. Result(s): In 18 centres, 38 patients were included in the PHRC, 43 were not; including 7 receiving Nusinersen. Mean age at diagnosis was 3.9 months (SD 2.4). 77 patients died at 7.5 months (SD 4,96), 32% at home, 8% in an intensive care unit. 85% patients received enteral nutrition, some through a gastrostomy (8%). 16% had a NIV. 70% received sedative treatment. No statistical difference was found between the two groups. However only all 3 patients (4%) receiving Nusinersen had both a gastrostomy and a NIV, without any sedation. Conclusion(s): Our data confirm that palliative care is essential in the management of ASI-1 patients, that is so far still a fatal disorder. Our data suggest that Nusinersen treatment was accompanied by more invasive supportive care, claiming for a standardization of practices in the children and caregivers' best-interest.
Hully M; Barnerias C; Chabrol B; Vuillerot C; Sabouraud P; Cuisset J M; Cances C; Ropars J; Rivier F; Isapoff A; Desguerre I
Developmental Medicine and Child Neurology
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/10.1111/dmcn.14244" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14244</a>
When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents
death; Health Personnel; pediatrics; parents; bereavement; child hospitalization; intensive care unit
OBJECTIVES: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care. DESIGN: Thematic analysis of incidental data from a larger grounded theory study. SETTING: Four Australian PICUs. SUBJECTS: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery. CONCLUSIONS: Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs.
Butler A E; Copnell B; Hall H
Pediatric Critical Care Medicine
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/10.1097/pcc.0000000000002040" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002040</a>
Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)
mourning; college; feasibility study; comfort; student; morality; conference abstract; injury; human; child; controlled study; terminal care; interview; staff; memory; intensive care unit; light; thinking; bath; illumination; job satisfaction; posthumous care; privacy
Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care in pediatric intensive care units.*Discuss multiple interventions to improve end-of-life care for children who die in intensive care units and their families. Approximately 70% of pediatric deaths at Cincinnati Children's (CCHMC) occur in an intensive care unit (ICU). Memories of the child's death critically impact the grieving process. Yet, ICU rooms are not designed for end-of-life (EOL) care. Space and privacy are limited; families may feel pressured to leave quickly after the child dies. Visitation policies limit family presence. Ritual bathing is difficult to accommodate. Some families desire to accompany the child through the basement to the morgue, a walk described as "unceremonious" and "stark". The Objectives of this study were to (i) understand EOL and post-mortem (PM) experiences of bereaved parents, how they relate to grief/mourning, (ii) understand EOL and PM experiences of staff, how they relate to job satisfaction/moral injury (iii) design new patient-centered, culturally sensitive processes and dedicated space for EOL and PM care. This project was a collaboration between CCHMC and a University of Cincinnati College of Design, Architecture, Art and Planning student design team, united through the Live Well Collaborative (LWC), a non-profit utilizing a design-thinking process to co-create innovations to improve health outcomes. LWC utilized human centered design in three phases: research, ideation and refinement. Research: LWC drew insights from a literature review and interviews with bereaved families and staff. The team designed an experience/journey map visually representing stakeholders' thoughts, experiences, and emotions throughout the EOL process. A feasibility/influence chart focused them on 3 improvement areas: privacy, transition from intensive care to legacy building, and parental control. Ideation: the team's co-creation sessions with parents and staff led to 7 opportunity concepts. Refinement: Concepts were tested and refined: room privacy lights, a comfort quilt, little reminders, announcement and spiritual lighting en route to the morgue, a remembrance garden and other spatial considerations. These were presented to the CCHMC team and other stakeholders for implementation.
Thienprayoon R; Lane J; Grossoehme D
Journal of Pain and Symptom Management
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.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.147</a>
The aggressive end-of-life care in pediatric cancer patients in taiwan
death; major clinical study; retrospective study; intubation; school child; cancer patient; cancer chemotherapy; conference abstract; medical record review; human; child; female; male; controlled study; diagnosis; hospice care; intensive care unit; do not resuscitate order; Taiwan; patent
Background/Objectives: Despite the dramatically improved outcomes for pediatric cancer patients, cancer is the leading cause of death in Taiwan, accounting for 21.8% of death in 2014. The pediatric end-of-life (EOF) care has not been extensively explored in the pediatric cancer patients. The study was to evaluate the trends in pediatric cancer EOF care in a medical center from 2008-2016 in Taiwan. Design/Methods: A retrospective chart review was conducted. All participants were diagnosed with cancer, and died between 2008 and 2016 in the southern medical center in Taiwan. 74 participants were included. Results: The average age at diagnosis, and death were 7.6+/-5.3 year olds, and 11.3+/-6.1 year olds, respectively. These patients in their last month of life spent greater than 14 days (79.1%) in the hospital, completed Do-Not-Resuscitate (DNR) (79.7%), dying in the intensive care unit (70.3%), received related chemotherapy (63.5%), underwent intubation (39.2%), or received cardiopulmonary resuscitation (5.4%). Only 35.1% patents received hospice care or hospice share-care in their last month of life, of these patents 25 % stared such service within the last 3 days. The care of the pediatric cancer EOF did not change over the study period except for significantly increasing DNR permits, and related chemotherapy in the last month of life. Conclusions: Overly aggressive treatment was reported in the last month of pediatric cancer patients in Taiwan. A quality of EOF care in pediatric cancer patients should be developed to meet the individuals and family's needs and preferences.
Wu LM
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Palliative care referral patterns for children with cancer: A three-year retrospective study
quality of life; infant; hospice; oncology; Korea; terminal care; lymphoma; palliative therapy; major clinical study; central nervous system; cancer patient; hospital patient; school child; pediatric ward; solid malignant neoplasm; time of death; patient referral; conference abstract; statistical analysis; human; child; female; male; diagnosis; resuscitation; emergency ward; intensive care unit; retrospective study; leukemia; outpatient department
Background/Objectives: Although Pediatric palliative care (PPC) has developed worldwide with the increasing number of children with serious illness, the concept of Pediatric palliative care is still unfamiliar in Asia. We report on Pediatric cancer patient referral patterns to a new PPC team at a university-affiliated children's hospital in Korea. Design/Methods: We examined our PPC database and performed descriptive statistical analysis of patient referral from hemato-oncology Department. Results: From April 2015 to March 2018, 142 patients were referred to PPC team from hemato-oncology Department. Ten patients (7.0%) were not seen in consultation by our team because of refusal of palliative care, referral to another hospital, or immediate death before consultation. Of 132 patients, eight patients were under 1 year-old, 53 were ages 1 to 9 years, 54 were ages 10-18 years, and 17 were older than 18. Most of our patients (72.0%) lived in distant region from our hospital and 76 patients (58%) were male. Diagnoses included solid tumor (35.6%), primary CNS (32.6%) and leukemia/lymphoma (29.5%). Significant number of patients were referred while in the Pediatric ward (76.5%), and 18.2% and 5.3% were from outpatient clinic and intensive care unit, respectively. Lastly, 84 patients (63.6%) died during the observation period, and of those, 61 (72.6%) died in an inpatient setting, 13 (15.5%) died at home, 9 (10.7%) died at hospice facilities, and one (1.2%) died in the emergency Department. At the time of death, most patients (95.2%) did not receive cardiopulmonary resuscitation (CPR) according to the end-of-life care plan, but 3 patients received CPR. The median age at death was 11.2 years. Conclusions: We report the palliative care referral patterns of Pediatric cancer patients in Korean children's hospital. To improve the quality of life of children with cancer, their palliative care needs should be identified and appropriate services be provided.
Kim MS; Kim CH; Moon YJ; Song IG; Shin HY
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Illness and end-of-life experiences of children with cancer who receive palliative care
hospice; Child; Palliative Care; death; Life Change Events; artificial ventilation; personal experience; palliative therapy; major clinical study; retrospective study; childhood cancer; hospital patient; Only Child; cohort analysis; cost effectiveness analysis; human; article; child; female; male; controlled study; quality of life; hospitalization; resuscitation; intensive care unit; invasive procedure; experimental therapy; cancer susceptibility; cancer center; data extraction; phase 1 clinical trial
Background: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). Methods: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. Results: The majority of pediatric palliative oncology patients received experimental therapy (79.4%), with 40.5% enrolled on a phase I trial. Approximately one-third received cancer-directed therapy during the last month of life (35.5%). More than half had at least one intensive care unit hospitalization (51.4%), with this subset demonstrating considerable exposure to mechanical ventilation (44.8%), invasive procedures (20%), and cardiopulmonary resuscitation (12.1%). Of the 122 patients who died in the hospital, 44.3% died in the intensive care unit. Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement (OR: 4.7, 95% CI: 2.47-8.97, P < 0.0001). Conclusions: Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.
Kaye EC; Gushue CA; DeMarsh S; Jerkins J; Sykes A; Lu Z; Snaman JM; Blazin L; Johnson LM; Levine DR; Morrison RR; Baker JN
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.26895" target="_blank" rel="noreferrer noopener">10.1002/pbc.26895</a>
End-of-life care in children with hematologic malignancies
home care; adolescent; blood transfusion; retrospective study; 52-26-6 (morphine); 57-27-2 (morphine); prescription; cohort analysis; fatigue; morphine/dt [Drug Therapy]; patient referral; treatment duration; human; article; child; female; male; controlled study; adult; terminal care; clinical article; child care; palliative therapy; intensive care unit; walking difficulty; hematologic malignancy/dt [Drug Therapy]; hematologic malignancy/th [Therapy]; hematologic malignancy/dt [Drug Therapy]; hospital mortality; mucosa inflammation; pallor; petechia; somnolence
Introduction: Hematologic malignancies (HM) represent the most common neoplasms in childhood. Despite improved overall survival rates, they are still a major contributor to cancer death in children. Aims: To determine the proportion of children with HM in pediatric palliative care (PPC) and to identify the clinical characteristics and symptoms in comparison to children with extracranial solid tumors (non HM patients). Patients and Methods: This study was conducted as a single-center retrospective cohort study of patients in the care of a large specialized PPC team. Results: Fifteen HM and 50 non HM patients were included. Symptoms in which HM patients scored significantly higher than non HM patients were mucositis, difficulty moving, somnolence, fatigue, petechiae and paleness. Blood transfusions were more frequently administered to HM patients, but large external hemorrhage was not observed in any child. A large variety of drugs and appliances were needed by the patients, with morphine being the most frequently prescribed drug. During the study period, a much larger and over the years even increasing number of HM patients (not in the care of the PPC team) died in hospital with an (assumed) curative intent, with two thirds dying in the ICU. Conclusions: Children with HM were referred to outpatient PPC with almost the full clinical picture of advanced leukemia. Noteworthy, the number of children with HM dying at home is decreasing in our center, instead a substantial proportion received high-intensity medical hospital care including novel anticancer therapies. These patients thus seem to be at an increased risk of dying in hospital as the right time to transfer them to palliative care is oftentimes missed.
Hoell JI; Warfsmann J; Balzer S; Borkhardt A; Janssen G; Kuhlen M
Oncotarget
2017
<a href="http://doi.org/%2010.18632/oncotarget.21188" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.21188</a>
Aggressiveness of care at the end of life in children with cancer: A nationwide cohort study
quality of life; Cause of Death; Child; Prevalence; Cohort Studies; Palliative Care; Aggression; cancer staging; major clinical study; cohort analysis; Quality of Life; Only Child; school child; developmental stage; Portugal; Icd-9; multicenter study; human; child; female; male; hospitalization; palliative therapy; resuscitation; morbidity; prevalence; intensive care unit; total parenteral nutrition; aggressiveness; immunotherapy; vascular access
Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how many children dying from cancer experience aggressive care near the end of life (ACCEoL) in such settings (the most common worldwide). Our study aims to determine time trends in the prevalence of ACCEoL in this population. Methods: Cohort study of children (0-17yo)who died with ICD-9-CMdiagnosis of cancer in public hospitals in mainland Portugal (Jan'10 toDec'15), identified fromthe Hospital Morbidity database. Based on previous studies and clinical experience, measures of ACCEoL comprised: in last 14 days of life: a) intravenous chemo/immunotherapy; in last 30 days of life: b)>14 days spent in hospital, c)>1 hospitalization, d) intensive care unit (ICU) admission, e) advanced life support (e.g. cardiopulmonary resuscitation), f) insertion of devices (e.g. central vascular access, CVA), g) total parenteral nutrition (TPN).We calculated prevalences and tested for time trends using chi2 for trend. Results: The study included 300 patients (median age 9 yo, IQR 4-14, 58.7%male). The prevalence of ACCEoL was stable over time, with 87.8%of the children experiencing at least one ACCEoLmeasure (85.2%in 2010, 88.4%in 2015; p=0.816)). Themost prevalent individual ACCEoL measures were>14 days spent in hospital (51.0%) and>1 hospitalization (43.3%). Most measures showed no statistically significant time trend. Conclusions: In a setting in early stages of pediatric palliative care development, we found that eight in ten children dying from cancer experience ACcEoL in their last month of life. This estimate is higher than those found in countries in more advanced developmental stages and may indicate a need to increase paediatric palliative care availability. The findings also prompt healthcare professionals to reflect on their current practice, balancing treatments and hospitalisations with patients' quality of life in the days they have to live.
Cardoso A; Martins BD; Lacerda A; Gomes B; Lopes S
Annals of Oncology
2017
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Mindful Movement: Tai Chi, Gentle Yoga, and Qi Gong for Hospitalized Pediatric Palliative Care Patients and Family Members
mindfulness;palliative therapy;qigong;Tai Chi;yoga;adverse outcome;caregiver;Child;hospital patient;human;intensive care unit;letter;movement therapy;occupational therapist;pediatric patient;quality of life
Parry SM;Staenberg B;Weaver MS
Journal of Palliative Medicine
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/10.1089/jpm.2018.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0203</a>
Low prevalence of palliative care and ethics consultations for children with chronic critical illness
childhood disease th [Therapy];Chronic disease;critical illness;Ethics;Palliative therapy;article;artificial ventilation;consultation;hospital admission;Human;intensive care unit;Length of Stay;prevalence;priority journal;tracheostomy
Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from premature birth and genetic syndromes has improved such that more clinicians offer, and more families request, interventions to prolong their child's life. While some interventions promise cure, others result in chronic disease states that require ongoing medical care.
Paediatric intensive care units (ICUs) across the United States (U.S.) report increasing numbers of children with prolonged and recurrent hospitalisations and medical complexity 1. We have suggested that this population be considered ‘chronically critically ill (CCI)’ 2. The CCI designation for adult ICU patients signals to families and clinicians alike that the patient's prognosis is poorer than predicted by their primary diagnosis alone.
Boss RD;Falck A;Goloff N;Hutton N;Miles A;Shapiro M;Weiss EM;Donohue PK
Acta Paediatrica, International Journal of Paediatrics
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/apa.14394" target="_blank" rel="noreferrer noopener">10.1111/apa.14394</a>
Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland
terminal care; human; child; female; male; cohort analysis; neurology; newborn; article; neonatology; home care; major clinical study; retrospective study; child care; Switzerland; oncology; resuscitation; medical record review; child death; life sustaining treatment; treatment withdrawal; health care utilization; hospital admission; 103-90-2 (paracetamol); paracetamol; adolescent; infant; intensive care unit; cause of death; length of stay; drug use; cardiology; community care; invasive procedure; narcotic analgesic agent
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. Methods: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. Results: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. Conclusions: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.
Zimmermann K; Cignacco E; Engberg S; Ramelet AS; von der Weid N; Eskola K; Bergstraesser E; Ansari M; Aebi C; Baer R; Popovic MB; Bernet V; Brazzola P; Bucher HU; Buder R; Cagnazzo S; Dinten B; Dorsaz A; Elmer F; Enriquez R; Fahrni-Nater P; Finkbeiner G; Frey B; Frey U; Greiner J; Hassink RI; Keller S; Kretschmar O; Kroell J; Laubscher B; Leibundgut K; Malaer R; Meyer A; Stuessi C; Nelle M; Neuhaus T; Niggli F; Perrenoud G; Pfammatter JP; Plecko B; Rupf D; Sennhauser F; Stade C; Steinlin M; Stoffel L; Thomas K; Vonarburg C; von Vigier R; Wagner B; Wieland J; Wernz B
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1021-2</a>
Palliative care in children with spinal muscular atrophy type 1: How do they die? Results from a French multicentric study (National Hospital clinical Research Program)
clinical research; palliative therapy; Werdnig Hoffmann disease; 50-48-6 (amitriptyline); 52-26-6 (morphine); 57-27-2 (morphine); 549-18-8 (amitriptyline); Amitriptyline; benzodiazepine derivative; Child; Clinical Article; clinical practice; Diagnosis; Drug Therapy; Female; follow up; Human; infant; Intensive care unit; Interview; Male; Morphine; multicenter study; nasogastric tube; Noninvasive Ventilation; psychologist; quantitative analysis; Resuscitation; time of death
Objective: The national Hospital Clinical Research Program (PHRC) called Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA 1) was conducted to depict palliative practices in that fatal disease, in which death up to now occurs few weeks or months after the diagnosis. We here report data about the conditions of death for the patients included. Methods: In this French multicentric study, patients were included from june 2012 to june 2016. Parents and physicians filled in a specific health book during the follow up, the physician in charge filled in a survey concerning the patient's management over the last 48 hours before death, then a semidirected interview of the parents was conducted by a trained psychologist 6 to 18 months after the child's death. We here report the quantitative analysis of data obtained from the survey about patient's management around death. Results: 38 patients were included in the study (17 centres), data were available for 36 dead patients. Median age at inclusion was 3 months (0,6-10,4), death occurred at a median 5,5 month of age (1,5-16,4), i.e a median follow-up of 2 months (0,2-12,8). 39% of patients died at home, 6% in an intensive care unit. At the time of death, patients received morphine (56%), benzodiazepines (39%), amitriptyline (39%). Treatments were given through a nasogastric tube (83%), and oxygenotherapy was delivered (76%). 6% patients received noninvasive ventilation at the time of death. No resuscitation recommendations had been prepared for most patients (97%), written in 85%, after a multidisciplinary meeting in most cases (79%). Conclusion: Our data confirm current knowledge about natural outcome in SMA 1, death occurring very soon after the diagnosis, claiming for an effective palliative management of the patients, including the involvement of parents in medical care at home.
Hully M; Barnerias C; Vanesse S; Viallard ML; Desguerre I
European Journal Of Paediatric Neurology
2017
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.ejpn.2017.04.1310" target="_blank" rel="noreferrer">10.1016/j.ejpn.2017.04.1310</a>
Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions
medical record; palliative therapy; Terminal Care; brain disease; central nervous system disease; Child; chromosome disorder; comfort; Death; Drug withdrawal; Female; Human; Intensive care unit; life sustaining treatment; lung disease; major clinical study; Male; Resuscitation; Study Design; Young Adult
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n = 114; response rate of 54%) of children with noncancer, noncardiac LT-CCCs who received care at a quaternary care children's hospital and medical record abstraction. RESULTS: The majority of children with LT-CCCs died in the hospital (62.7%) with more than one-half (53.3%) dying in the intensive care unit. Those with static encephalopathy (AOR, 0.19; 95% CI, 0.04-0.98), congenital and chromosomal disorders (AOR, 0.28; 95% CI, 0.09-0.91), and pulmonary disorders (AOR, 0.08; 95% CI, 0.01-0.77) were significantly less likely to die at home compared with those with progressive central nervous system (CNS) disorders. Almost 50% of patients died after withdrawal or withholding of life-sustaining therapies, 17.5% died during active resuscitation, and 36% died while receiving comfort care only. The mode of death varied widely across LT-CCCs, with no patients with pulmonary disorders dying receiving comfort care only compared with 66.7% of those with CNS progressive disorders. A majority of patients had palliative care involvement (79.3%); however, in multivariable analyses, there was distinct variation in receipt of palliative care across LT-CCCs, with patients having CNS static encephalopathy (AOR, 0.07; 95% CI, 0.01-0.68) and pulmonary disorders (AOR, 0.07; 95% CI, 0.01-.09) significantly less likely to have palliative care involvement than those with CNS progressive disorders. CONCLUSIONS: Significant differences in patterns of care at the end of life exist depending on LT-CCC type. Attention to these patterns is important to ensure equal access to palliative care and targeted improvements in end-of-life care for these populations.
DeCourcey DD; Silverman M; Oladunjoye A; Balkin Emily M; Wolfe J
The Journal Of Pediatrics
2017
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.jpeds.2017.09.078" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.09.078</a>
Disparities in the intensity of end-of-life care for children with cancer
Childhood Cancer; Health Care Disparity; Terminal Care; Adolescent; Adult; Article; Cancer Chemotherapy; Caucasian; Child; Childhood Mortality; Cohort Analysis; Controlled Study; Demography; Female; Hematologic Malignancy; Hemodialysis; Hospital Admission; Hospital Mortality; Human; Infant; Intensive Care Unit; Intubation; Major Clinical Study; Male; Newborn; Population Research; Priority Journal; Resuscitation; Retrospective Study
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had >=1 intensity indicator, 23% >=2, and 22% >=1 intense medical intervention. There was a bimodal association between age and intensity: Ages <5 years and 15 to 21 years was associated with intense care. Patients with hematologic malignancies were more likely to have high-intensity end-of-life care, as were patients from underrepresented minorities, those who lived closer to the hospital, those who received care at a nonspecialty center (neither Children's Oncology Group nor National Cancer Institute Designated Cancer Center), and those receiving care after 2008. CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Pediatrics
2017
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/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">10.1542/peds.2017-0671</a>10.1542/peds.2017-0671
Pediatric chronic patients at outpatient clinics: A study in a Latin American University Hospital
Chronic Patient; Emergency Ward; Hospital Admission; Hospitalization; Outpatient; University Hospital; Adolescent; Adult; Cardiology; Child; Controlled Study; Cross Sectional Study; Death; Emergency Health Service; Endocrinology; Female; Hematology; Human; Intensive Care Unit; Kidney Transplantation; Major Clinical Study; Male; Nephrology; Neurology; Oncology; Pain; Physician; Psychiatry; Rheumatology
Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases followed-up in one year. The data were collected through the electronic system, according to the number of physician appointments in 23 pediatric specialties. Patients were divided in two groups: children (0-9 years) and adolescents (10-19 years). Early (10-14 years) and late (15-19 years) adolescent groups were also analyzed. Results: Of the total sample, 56% were children and 46% were adolescents. The frequencies of following pediatric specialties were significantly higher in adolescents when compared with children: cardiology, endocrinology, hematology, nephrology/renal transplantation, neurology, nutrology, oncology, palliative and pain care, psychiatry, and rheumatology (p <. 0.05). The frequencies of emergency service visits (30% vs. 17%, p <. 0.001), hospitalizations (23% vs. 11%, p <. 0.001), intensive care unit admissions (6% vs. 2%, p <. 0.001), and deaths (1% vs. 0.6%, p = 0.002) were significantly lower in adolescents than in children. However, the number of physician appointments (>=13) per patient was also higher in the adolescent group (5% vs. 6%, p = 0.018). Further analysis comparison between early and late adolescents revealed that the first group had significantly more physician appointments (35% vs. 32%, p = 0.025), and required more than two pediatric specialties (22% vs. 21%, p = 0.047). Likewise, the frequencies of emergency service visits (19% vs. 14%, p <. 0.001) and hospitalizations (12% vs. 10%, p = 0.035) were higher in early adolescents. Conclusions: This study evaluated a large population in a Latin American hospital and suggested that early adolescents with chronic diseases required many appointments, multiple specialties and hospital admissions.
Alveno RA; Miranda CV; Passone CG; Waetge AR; Hojo ES; Farhat SCL; Odone-Filho V; Tannuri U; Carvalho WB; Carneiro-Sampaio M; Silva CA
Jornal De Pediatria.
2017
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<a href="http://doi.org/10.1016/j.jped.2017.07.014" target="_blank" rel="noreferrer">10.1016/j.jped.2017.07.014</a>
Palliative Care
Neoplasm; Palliative Therapy; 73-78-9 (lidocaine); 76-99-3 (methadone); 103-90-2 (paracetamol); 125-56-4 (methadone); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 8002-76-4 (opiate); 8008-60-4 (opiate); 12794-10-4 (benzodiazepine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 53663-61-9 (opiate); 56934-02-2 (lidocaine); 60142-96-3 (gabapentin); Acute Stress Disorder; Alcohol Consumption; Anticonvulsive Agent; Appetite; Benzodiazepine; Corticosteroid; Distress Syndrome; Dyspnea; Fentanyl; Gabapentin; Hair Loss; Health Care Personnel; Health Care System; Hospital; Human; Intensive Care Unit; Lidocaine; Major Depression; Medical Staff; Methadone; Mortality; Nausea And Vomiting; Obesity; Opiate; Paracetamol; Paralysis; Patient Care Planning; Priority Journal; Prostaglandin/ec [endogenous Compound]; Quality Of Life; Tracheostomy
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev 33(7):616-621, 2007). Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group (Ferrari et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4850-4857, 2010); Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The interaction of psychosocial, emotional, physical, and existential issues is essential to consider (Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine can be particularly impactful when delivering palliative care. The benefit of a multidisciplinary palliative care approach is widely appreciated as is the need to begin the process early in order to develop a trusting relationship (Wiener et al. Pediatr Blood Cancer 60(5):715-718, 2013; Baker et al. Pediatr Clin N Am 55(1):223-250, 2008; Ferris et al. J Clin Oncol Off J Am Soc Clin Oncol 27(18):3052-3058). Honest communication which supports autonomy is essential in discussions of their goals, worries, risks versus benefits of treatment, and advanced care planning (Clark and Fasciano Am J Hosp Palliat Care 32(1):101-111, 2015; Christenson et al. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract 24(5):286-291, 2010; Linebarger et al. Pediatr Clin N Am 61(4):785-796, 2014).
Wasilewski-Masker K; Howk T; Connelly E; Postovsky S; Brill P; Wrammert KC; Pillai R
Pediatric Oncology
2017
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="https://doi.org/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">10.1007/978-3-319-33679-4_31</a>
Bringing Home To The Hospital: Development Of The Reflection Room And Provider Perspectives
Intensive Care Unit; Posthumous Care; Terminal Care; Child; Family; Hospital Patient; Human; Major Clinical Study; Model; Privacy; Quantitative Study; Staff; United States
Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this care in our hospital. Objective: We hypothesized staff would report a positive experience in providing EOL and/or postmortem (PM) care here and would recommend this to peers. Design: This explorative study summarized room use data and evaluated staff experiences using a voluntary qualitative and quantitative survey. Subjects: The survey was administered to the inpatient interdisciplinary team. Results: From 2011 to 2014, 116 children used the RR, 64% for PM care, and 34% for EOL care. A total of 201 staff responded to the survey. Of them, 90% described the space as a valuable resource to families, 90% reported a preference for using this location versus a hospital unit, and 93% stated they would encourage their peers to do the same. Advantages listed were increased privacy, allowance for more visitors, and a quieter, calmer environment. Challenges included distance from the unit of transfer, managing assignments in two hospital locations, and medication transportation. Overall, there was a measureable decrease in the number of deaths pronounced in the ICU as the number pronounced in the RR increased, illustrating a significant change in practice. Conclusion: This study demonstrated an overwhelmingly positive experience in providing EOL and/or PM care to children in the RR and staff would recommend this to peers. This model of care should be a serious consideration for hospitals in the United States. © Copyright 2017, Mary Ann Liebert, Inc.
Vesely C; Newman V; Winters Y; Flori H
Journal Of Palliative Medicine
2017
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10.1089/jpm.2016.0070
The Family Communication Study: A Randomized Trial Of Prospective Pediatric Palliative Care Consultation, Study Methodology And Perceptions Of Participation Burden.
Family/caregivers Psychology; Intensive Care Unit; Pediatrics; Psychological Adaptation; Randomized Trial; Stress Disorders
BACKGROUND:
To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8days was the trigger for early palliative care involvement.
METHODS:
Cluster-randomized trial with children as the unit of randomization. Up to 3 family members per child were recruited. Family stress symptoms were recorded at baseline, discharge from the ICU, and 3months post-enrollment. Questionnaire burden was assessed on a 1-10 point scale at each time point and open-ended comments were analyzed to describe the participants' experience in the study.
RESULTS:
380 family members of 220 children (control=115 children and 204 family members; intervention=105 children and 176 family members) were recruited, which represented 50% of all eligible families. Most family participants were parents (86% control; 92% intervention) and female (66% both groups). Retention rates were high through the 3-month follow-up: 93% and 90% for the control and intervention groups respectively. Questionnaire burden was very low: mean (sd) scores were 1.1 (1.6), 0.7 (1.5), and 0.9 (1.6) for the baseline, discharge and follow-up questionnaires, respectively. Comments suggest that participation was beneficial by promoting reflection and self-awareness about stress, coping and resilience, and feeling cared for because the intervention and questionnaires focused on their own well-being.
CONCLUSIONS:
The participants' comments regarding the focus on them as the point of intervention reflects the value of conducting research with family members of seriously ill children during ICU stays.
Starks H; Doorenbos A; Lindhorst T; Bourget E; Aisenberg E; Oman N; Rue T; Curtis JR; Hays R
Contemporary Clinical Trials
2016
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).
DOI: 10.1016/j.cct.2016.05.004