Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit
Female; Humans; infant; Male; Intensive Care Units; Adult; Parent-Child Relations; Questionnaires; Middle Aged; Communication; Death; Physician's Role; Needs Assessment; Critical Care; Pediatric; bereavement; infant; Newborn; ICU Decision Making; Parents/psychology
OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews were conducted with 56 parents of 48 children. All children died in the PICU of one of six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) 3 to 12 months before the study. RESULTS: Only seven (13%) parents had a scheduled meeting with any physician to discuss their child's death; 33 (59%) wanted to meet with their child's intensive care physician. Of these, 27 (82%) were willing to return to the hospital to meet. Topics that parents wanted to discuss included the chronology of events leading to PICU admission and death, cause of death, treatment, autopsy, genetic risk, medical documents, withdrawal of life support, ways to help others, bereavement support, and what to tell family. Parents sought reassurance and the opportunity to voice complaints and express gratitude. CONCLUSIONS: Many bereaved parents want to meet with the intensive care physician after their child's death. Parents seek to gain information and emotional support, and to give feedback about their PICU experience.
2007
Meert KL; Eggly S; Pollack M; Anand KJ; Zimmerman J; Carcillo J; Newth CJ; Dean JM; Willson DF; Nicholson C; National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network
The Journal Of Pediatrics
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2007.01.050" target="_blank" rel="noreferrer">10.1016/j.jpeds.2007.01.050</a>
Ethical and logistical considerations of multicenter parental bereavement research
Multi-site Ethics
BACKGROUND: Multicenter research has the potential to recruit participants with diverse racial, ethnic, and geographic backgrounds and is essential for understanding heterogeneity in bereavement. The National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) is a multicenter network charged with conducting research on the pathophysiology and management of critical illness in childhood. Among its research activities, the CPCCRN has undertaken research in parental bereavement because most childhood deaths in the United States occur in hospitals, primarily in critical care units. OBJECTIVE: The purpose of this paper is to discuss ethical and logistical issues found by the CPCCRN to be problematic to multicenter research with bereaved parents and to explore research strategies that may be practicably implemented. RESULTS: Ethical and logistical challenges encountered by the CPCCRN included issues of privacy; confidentiality; voluntariness; minimizing risks; working with multiple institutional review boards; researcher qualifications, training and support; and methods of data collection. Strategies to address these challenges included local recruitment of participants; flexibility in consent methods across sites; participant options for methods of data collection; involvement of local bereavement support services; central training of researchers with systematic monitoring and opportunities for support; and use of a secure Web-based collaborative workspace. CONCLUSIONS: Multicenter parental bereavement research has distinct ethical issues that must be addressed by the logistics of the research plan. Greater attention to the issues identified may facilitate research to reduce adverse mental and physical health outcomes in a diverse population of bereaved individuals.
2008
Meert KL; Eggly S; Dean JM; Pollack M; Zimmerman J; Anand KJ; Newth CJ; Willson DF; Nicholson C
Journal Of Palliative Medicine
2008
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/10.1089/jpm.2007.0120" target="_blank" rel="noreferrer">10.1089/jpm.2007.0120</a>
Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit
Child; Female; Humans; Male; United States; Intensive Care Units; Adult; Interviews as Topic; Hospital Mortality; Prognosis; Middle Aged; Professional-Family Relations; Communication; Death; Physician's Role; Truth Disclosure; Hospitals; Pediatric; Preschool; bereavement; Parents/psychology
OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU). DESIGN: A secondary analysis of a qualitative interview study. SETTING: Six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. PARTICIPANTS: Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. INTERVENTIONS: Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language. CONCLUSIONS: The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust. Future research is needed to investigate whether the way bad news is discussed influences psychological adjustment and family functioning among bereaved parents.
2008
Meert KL; Eggly S; Pollack M; Anand KJ; Zimmerman J; Carcillo J; Newth CJ; Dean JM; Willson DF; Nicholson C; National Institute of Child Health; Human Development Collaborative Pediatric Critical Care Research Network
Pediatric Critical Care Medicine
2008
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/10.1097/01.PCC.0000298644.13882.88" target="_blank" rel="noreferrer">10.1097/01.PCC.0000298644.13882.88</a>
Morbidity: Changing the Outcome Paradigm for Pediatric Critical Care
Critical Care; Functional Status; Morbidity; Outcomes; Outcomes Research; Pediatric Critical Care; Pediatric Intensive Care; Quality
The focus of critical care has evolved from saving lives to preservation of function. Morbidity rates in pediatric critical care are approximately double mortality rates. Morbidity includes complications of disease and medical care. In pediatric critical care, functional status morbidity is an intermediate outcome in the progression toward death and is the result of the same factors associated with mortality, including physiologic profiles and case-mix factors. The Functional Status Scale developed by Collaborative Pediatric Critical Care Research Network is a validated, granular, age-independent measure of functional status that has proved valuable and practical even in large outcome studies.
Heneghan JA; Pollack M
Pediatric Clinics Of North America
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).
10.1016/j.pcl.2017.06.011
End-of-life Practices Among Tertiary Care Picus In The United States: A Multicenter Study
Adolescent;Cause Of Death;Child;Child Preschool;Female;Hospital Mortality;Humans;Infant;Intensive Care Units Pediatric;Length Of Stay;Male;Practice Patterns Physicians';Prospective Studies;Terminal Care/methods;Terminal Care/statistics & Numerical Data;Tertiary Healthcare;Tissue And Organ Procurement/statistics & Numerical Data;United States
OBJECTIVE: To describe variability in end-of-life practices among tertiary care PICUs in the United States. DESIGN: Secondary analysis of data prospectively collected from a random sample of patients (n = 10,078) admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. SETTING: Seven clinical centers affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Patients included in the primary study were less than 18 years old, admitted to a PICU, and not moribund on PICU admission. Patients included in the secondary analysis were those who died during their hospital stay. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Two hundred and seventy-five (2.7%; range across sites, 1.3-5.0%) patients died during their hospital stay; of these, 252 (92%; 76-100%) died in a PICU. Discussions with families about limitation or withdrawal of support occurred during the initial PICU stay for 173 patients (63%; 47-76%; p = 0.27) who died. Of these, palliative care was consulted for 67 (39%; 12-46%); pain service for 11 (6%; 10 of which were at a single site); and ethics committee for six (3%, from three sites). Mode of death was withdrawal of support for 141 (51%; 42-59%), failed cardiopulmonary resuscitation for 53 (19%; 12-28%), limitation of support for 46 (17%; 7-24%), and brain death for 35 (13%; 8-20%); mode of death did not differ across sites (p = 0.58). Organ donation was requested from 101 families (37%; 17-88%; p < 0.001). Of these, 20 donated (20%; 0-64%). Sixty-two deaths (23%; 10-53%; p < 0.001) were medical examiner cases. Of nonmedical examiner cases (n = 213), autopsy was requested for 79 (37%; 17-75%; p < 0.001). Of autopsies requested, 53 (67%; 50-100%) were performed. CONCLUSIONS: Most deaths in Collaborative Pediatric Critical Care Research Network-affiliated PICUs occur after life support has been limited or withdrawn. Wide practice variation exists in requests for organ donation and autopsy.
Meert KL; Keele L; Morrison W; Berg RA; Dalton H; Newth CJL; Harrison R; Wessel DL; Shanley T; Carcillo J; Clark A; Holubkov R; Jenkins T L; Doctor A; Dean JM; Pollack M
Pediatric Critical Care Medicine
2015
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).
10.1097/PCC.0000000000000520
Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?
Critical Care/mt [methods]; Intensive Care Units Pediatric; Life Support Care/ut [utilization]; Resuscitation Orders; Terminal Care/mt [methods]; Child; Child Preschool; Female; Humans; Infant; Length Of Stay; Logistic Models; Male; Prospective Studies; Severity Of Illness Index
OBJECTIVES: Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or withdrawal of life support with clinicians during their child's PICU stay and to determine the factors associated with limitation or withdrawal of life support discussions. DESIGN: Secondary analysis of data prospectively collected from a random sample of children admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. SETTING: Seven clinical sites affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Ten thousand seventy-eight children less than 18 years old, admitted to a PICU, and not moribund at admission. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Families of 248 children (2.5%) discussed limitation or withdrawal of life support with clinicians. By using a multivariate logistic model, we found that PICU admission age less than 14 days, reduced functional status prior to hospital admission, primary diagnosis of cancer, recent catastrophic event, emergent PICU admission, greater physiologic instability, and government insurance were independently associated with higher likelihood of discussing limitation or withdrawal of life support. Black race, primary diagnosis of neurologic illness, and postoperative status were independently associated with lower likelihood of discussing limitation or withdrawal of life support. Clinical site was also independently associated with likelihood of limitation or withdrawal of life support discussions. One hundred seventy-three children (69.8%) whose families discussed limitation or withdrawal of life support died during their hospitalization; of these, 166 (96.0%) died in the PICU and 149 (86.1%) after limitation or withdrawal of life support was performed. Of those who survived, 40 children (53.4%) were discharged with severe or very severe functional abnormalities, and 15 (20%) with coma/vegetative state. CONCLUSIONS: Clinical factors reflecting type and severity of illness, sociodemographics, and institutional practices may influence whether limitation or withdrawal of life support is discussed with families of PICU patients. Most children whose families discuss limitation or withdrawal of life support die during their PICU stay; survivors often have substantial disabilities.
Keele L; Meert KL; Berg RA; Dalton H; Newth CJ; Harrison R; Wessel DL; Shanley T; Carcillo J; Morrison W; Funai T; Holubkov R; Dean JM; Pollack M; Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network
Pediatric Critical Care Medicine
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).
10.1097/PCC.0000000000000614
Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?
Child; Child Preschool; Critical Care/methods; Female; Humans; Infant; Intensive Care Units Pediatric; Length Of Stay; Life Support Care/utilization; Logistic Models; Male; Prospective Studies; Resuscitation Orders; Severity Of Illness Index; Terminal Care/methods
Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or withdrawal of life support with clinicians during their child's PICU stay and to determine the factors associated with limitation or withdrawal of life support discussions.
DESIGN:
Secondary analysis of data prospectively collected from a random sample of children admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013.
SETTING:
Seven clinical sites affiliated with the Collaborative Pediatric Critical Care Research Network.
PATIENTS:
Ten thousand seventy-eight children less than 18 years old, admitted to a PICU, and not moribund at admission.
INTERVENTIONS:
None.
MEASUREMENTS AND MAIN RESULTS:
Families of 248 children (2.5%) discussed limitation or withdrawal of life support with clinicians. By using a multivariate logistic model, we found that PICU admission age less than 14 days, reduced functional status prior to hospital admission, primary diagnosis of cancer, recent catastrophic event, emergent PICU admission, greater physiologic instability, and government insurance were independently associated with higher likelihood of discussing limitation or withdrawal of life support. Black race, primary diagnosis of neurologic illness, and postoperative status were independently associated with lower likelihood of discussing limitation or withdrawal of life support. Clinical site was also independently associated with likelihood of limitation or withdrawal of life support discussions. One hundred seventy-three children (69.8%) whose families discussed limitation or withdrawal of life support died during their hospitalization; of these, 166 (96.0%) died in the PICU and 149 (86.1%) after limitation or withdrawal of life support was performed. Of those who survived, 40 children (53.4%) were discharged with severe or very severe functional abnormalities, and 15 (20%) with coma/vegetative state.
CONCLUSIONS:
Clinical factors reflecting type and severity of illness, sociodemographics, and institutional practices may influence whether limitation or withdrawal of life support is discussed with families of PICU patients. Most children whose families discuss limitation or withdrawal of life support die during their PICU stay; survivors often have substantial disabilities.
Keele L; Meert KL; Berg RA; Dalton H; Newth CJ; Harrison R; Wessel DL; Shanley T; Carcillo J; Morrison W; Funai T; Holubkov R; Dean JM; Pollack M
Pediatric Critical Care Medicine
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: 10.1097/PCC.0000000000000614