Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team
child; article; controlled study; female; human; male; palliative therapy; clinical article; satisfaction; sex difference; adolescent; drug withdrawal; medical record; emotional support; intubation; at home mortality
Kyungpook National University Children's Hospital initiated pediatric palliative care (PPC) services in January 2019, focusing on children and adolescents with life-limiting conditions (LLC). A study examined changes in the end-of-life processes in patients with LLC before and after a PPC intervention. This study included 48 deceased patients under 18 years at the hospital, divided into two groups: January 2015 to December 2016 without PPC (25 patients, Period 1) and January 2019 to April 2022 with PPC (23 patients, Period 2). Analysis of medical records revealed the following: no age/sex differences; more active advanced care planning in Period 2 (15/23 vs. 7/25, p = 0.01); discussing withholding/withdrawing treatment increased in Period 2 (91.3% vs. 64.0%, p = 0.025); intubation and CPR were less frequent in Period 2 (intubation 2/23 vs. 19/25, p = 0.000; CPR 3/23 vs. 11/25, p = 0.018); Period 1 had more deaths in the ICU (18/25 vs. 10/23, p = 0.045); and 3 patients in Period 2 chose home deaths. A survey in Period 2 revealed high satisfaction with emotional support (91.7%), practical assistance (91.6%), and symptom management (83.3%). PPC facilitated discussions on advanced care planning and treatment choices, ensuring peaceful and prepared farewells for children with LLC and their families.
Kwon JE; Kim YH
Journal of Clinical Medicine
2023
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<a href="http://doi.org/10.3390/jcm12206588" target="_blank" rel="noreferrer noopener">10.3390/jcm12206588</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
Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents
Child; Female; Humans; Adult; Attitude to Health; Questionnaires; Aged; Middle Aged; Choice Behavior; adolescent; ICU Decision Making; Parents/psychology; Intubation; Cardiopulmonary Resuscitation/psychology; Emergency Treatment/psychology; Hospitalized/psychology; Intratracheal/psychology; Patients' Rooms; Penetrating/therapy; Phlebotomy/psychology; Spinal Puncture/psychology; Wounds
STUDY OBJECTIVES: No large study has addressed whether parents want to be present when invasive procedures are performed on their children in the emergency department. We conducted a survey to address this question. METHODS: The study used a self-administered, written survey consisting of 5 pediatric scenarios with increasing level of procedural invasiveness. Parents in an urban, teaching hospital ED waiting area were asked to participate. RESULTS: Of 407 persons asked to participate, 400 (98%) completed the survey. The number of parents expressing a desire to be present during a procedure performed on their child was 387 (97.5%) for venipuncture of the extremity, 375 (94.0%) for laceration repair, 341 (86.5%) for lumbar puncture, and 317 (80.9%) for endotracheal intubation. For a major resuscitation scenario, 316 (80.7%) wished to be present if their child were conscious during the resuscitation, 277 (71.4%) wanted to be present if their child were unconscious during the resuscitation, whereas 322 (83.4%) indicated a desire to be present if their child were likely to die during the resuscitation. Of the 400, 261 (65.3%) wished to be present for all 5 scenarios. Only 26 (6.5%) wanted the physician to determine parental presence in all 5 scenarios. CONCLUSION: Most parents surveyed would want to be present when invasive procedures are performed on their children. With increasing procedural invasiveness, parental desire to be present decreased. However, most parents would want to be in attendance if their child were likely to die, and nearly all parents want to participate in the decision about their presence.
1999
Boie ET; Moore GP; Brummett C; Nelson DR
Annals Of Emergency Medicine
1999
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/s0196-0644(99)70274-x" target="_blank" rel="noreferrer">10.1016/s0196-0644(99)70274-x</a>
End-of-Life Intensity for Adolescents and Young Adults With Cancer: A Californian Population-Based Study That Shows Disparities
Adolescence; Adult; Age Factors; California; Childhood Neoplasms -- Therapy -- California; Confidence Intervals; Death Certificates; Descriptive Statistics; Healthcare Disparities -- California; Hematologic Neoplasms -- Therapy -- California; Hispanics; Hospitalization; Hospital Mortality; Human; Intensive Care Units; Intubation; Minority Groups; Neoplasms -- Therapy -- California; Odds Ratio; Oncologic Care -- California; Race Factors; Readmission; Retrospective Design; Socioeconomic Factors; Terminal Care -- California; Whites; Young Adult
Purpose Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). High-intensity end-of-life care is expensive and may not be consistent with patient goals. However,the intensity of end-of-life care forAYAdecedents with cancer--especially the effect of care received at specialty versus nonspecialty centers--remains understudied.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Journal Of Oncology Practice
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/10.1200/jop.2016.020586" target="_blank" rel="noreferrer">10.1200/jop.2016.020586</a>
Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
hematopoietic cell; palliative therapy; transplantation; anxiety; appetite; bleeding; bodily secretions; child; conference abstract; controlled study; coughing; data analysis; demographics; diarrhea; distress syndrome; do not resuscitate order; documentation; dyspnea; edema; fatigue; female; fever; hospice; human; human cell; intubation; irritability; lifespan; major clinical study; male; medical record review; nausea and vomiting; pain; Palliative Care; quality of life; retrospective study; surgery; survival; terminal care
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and wholistic support for patients and their families, especially at end-of-life, yet little empiric data exists regarding the impact of PC involvement in pediatric HCT. Objective(s): Compare deceased pediatric HCT patients with and without PC involvement to identify differences in end-of-life characteristics. Method(s): Retrospective medical record review was performed for all HCT patients at St. Jude Children's Research Hospital who died between March 2008 and October 2017 (N=160). Variables collected included: demographics, PC involvement, symptom and end-of-life characteristics. Data analysis included descriptive statistics and tests of significance. Result(s): Of 160 deceased HCT patients PC involvement was present in 115 (71.9%) compared to 45 (28.1%) with no PC. No significant differences in demographic characteristics were noted between the 2 groups. Longer survival duration from HCT to death was noted in patients who received PC whose mean death was 305.5 days after HCT (median 189, range 10-2,834) as compared to a mean of 228.8 days between HCT and death in the no PC group (median 129, range 13-1,444) (p=0.047). Significant differenced were noted in which patients with PC involvement were more likely to have a DNR order (PC n=76 74.5%, NPC n=16 48.5% p=.005), less likely to be intubated in the last 24 hours of life (PC n=36 34%, NPC n=21 60% p=.006), and more likely to have been enrolled in hospice (PC n=38 33%, NPC n=4 8.9% p=.002). Documentation of distressing symptoms in the last month of life was higher in the PC group with notable symptom burden in both groups. Most frequently documented symptoms overall were pain (95.3%), fatigue (83.2%), fever (80.0%), edema (78.0%), bleeding (66.9%), diarrhea (65.6%), poor appetite (65.3%), anxiety (63.4%), nausea/ vomiting (58.9%), dyspnea (58.5%), secretions (57.4%), irritability (48.0%), and cough (47.5%). Conclusion(s): PC integration in pediatric HCT likely results in improved end-of-life care by way of enhanced advanced care planning, decreased intubation and resuscitative events, and increased hospice enrollment. PC integration in HCT does not lead to shorter life spans and may improve quality of life via enhanced symptom recognition and management.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Levine DR; Cuviello A; Baker JN
Transplantation and Cellular Therapy
2023
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<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900237-3</a>
Palliative care and pediatric surgery
Child; Humans; Palliative Care; Terminal Care; Physician-Patient Relations; Critical Illness; Prognosis; Professional-Family Relations; Tracheostomy; Resuscitation Orders; Gastrostomy; quality of life; patient care team; Intratracheal; Intubation; Pleurodesis
Pediatric surgeons can play an important role in offering procedures that may improve the quality of life for terminally ill children. As with all palliative interventions, surgical therapies should be evaluated in the context of explicitly defined treatment goals while weighing the risks and benefits of procedures in the context of a shortened life span. It is essential that pediatric surgeons become active members in the multidisciplinary team that provides palliative care.
Shelton J; Jackson GP
The Surgical Clinics Of North America
2011
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Journal Article
<a href="http://doi.org/10.1016/j.suc.2011.01.004" target="_blank" rel="noreferrer">10.1016/j.suc.2011.01.004</a>
Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
adult; cardiology; Caucasian; child; cohort analysis; conference abstract; controlled study; conversation; decision making; expectation; female; heart single ventricle; high school; hospitalization; hospitalized child; human; infant; intubation; length of stay; major clinical study; male; married person; medical record review; mother; prognosis; prospective study; pulmonary hypertension; pulmonary vein stenosis; recall; young adult
Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation between length of stay of a child with advanced heart disease and parent reports of conflicting information from physicians. Original Research Background and Objectives: Communication between parents and physicians is essential to high-quality care. For families of patients with AHD, understanding prognosis is critical to decision making and is associated with less perceived suffering at end of life. This is the first study to prospectively evaluate how parents of children with AHD perceive prognostic communication with their child's physicians.
Miller M K; Morell E; Feraco A; Goldberg S; Reichman J; Sahakian L; Sleeper L; Blume E
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.323</a>
Pediatric extubation: "pulling the tube"
Humans; infant; Intensive Care Units; Euthanasia; Patient Care Planning; Neonatal; decision making; Newborn; hospice care; Patient Transfer; Intratracheal; Intubation; Passive; Pediatrics/standards
2001
Sine D; Sumner L; Gracy D; von Gunten CF
Journal Of Palliative Medicine
2001
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Journal Article
<a href="http://doi.org/10.1089/109662101753381692" target="_blank" rel="noreferrer">10.1089/109662101753381692</a>
Physiological changes, plasma beta-endorphin and cortisol responses to tracheal intubation in neonates
Humans; infant; Drug Therapy; Analgesia; Blood Pressure; Heart Rate; beta-Endorphin/blood; Biomarkers of Pain; Newborn; Blood Glucose/metabolism; Oxygen/blood; Intubation; Hydrocortisone/blood; Combination; Alfentanil; Glycopyrrolate/therapeutic use; Intratracheal/adverse effects; Meperidine; Premedication; Succinylcholine
Physiological, plasma beta-endorphin and cortisol responses to nasotracheal intubation were studied in 20 distressed infants of median age 0.3 days (range 0.1-23 days) randomized into groups given pethidine 1 mg/kg (n = 10) or alfentanil 20 micrograms/kg plus suxamethonium 1.5 mg/kg (n = 10) before intubation. All of the infants were given glycopyrrolate 3-5 micrograms/kg. Hypoxaemia during intubation was found in all 10 infants in the pethidine group and in 7 of 10 infants in the alfentanil-suxamethonium group, its duration being significantly longer in the pethidine group and being associated with the duration of the intubation procedure. Blood pressure increased, but not statistically significantly, in all except 2 patients in the alfentanil-suxamethonium group and bradycardia appeared in 1 patient in each group. Plasma beta-endorphin and cortisol values did not show any statistically significant intra-group or inter-group differences. Newborn infants suffer from hypoxaemia during intubation when awake more and therefore need adequate premedication before elective intubation. One alternative is the combination of glycopyrrolate, alfentanil and suxamethonium described here, although the ideal medication and dosage still remain to be defined.
1994
Pokela ML; Koivisto M
Acta Paediatrica
1994
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/10.1111/j.1651-2227.1994.tb13040.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1994.tb13040.x</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>
Trends in the aggressiveness of pediatric cancer near the end-of-life
adult; aggressiveness; artificial ventilation; cancer patient; child; Childhood cancer; conference abstract; controlled study; death; diagnosis; female; hematologic malignancy; human; intubation; Japan; major clinical study; male; resuscitation; school child; terminal care; young adult
Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in Japan.
Yotani N; Shinjo D; Fushimi K; Matsumoto K
Pediatric Blood and Cancer
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/10.1002/pbc.27514" target="_blank" rel="noreferrer noopener">10.1002/pbc.27514</a>