Therapeutic Alliance Between Bereaved Parents and Physicians in the PICU
bereavement; child; parent; Pediatric intensive care unit; physician; race; therapeutic alliance
OBJECTIVES: Therapeutic alliance is the collaborative bond that develops between patients/families and healthcare providers. Our objective is to determine the extent of therapeutic alliance bereaved parents perceive to have occurred with their child's physicians during their child's PICU stay, and associated factors. DESIGN: Multicenter observational study. SETTING: Eight children's hospitals affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Parents greater than or equal to 18 years old whose child died in a PICU (including cardiac ICU). INTERVENTIONS: Bereaved parents completed the Human Connection Scale, a 16-item measure of therapeutic alliance, 6 months after their child's death. Human Connection Scale scores range from 16 to 64 with higher scores indicating greater alliance. Parents provided sociodemographic data, and medical records were reviewed for the child's clinical characteristics. MEASUREMENTS AND MAIN RESULTS: Two-hundred and thirty-three parents of 157 deceased children responded to the Human Connection Scale with greater than or equal to 80% item completion. Among parents, 146 (62.7%) were female, 155 (66.5%) were White and 46 (19.7%) were Black, 175 (75.1%) were married, and 209 (89.7%) had at least a high-school education. Among children, median age at the time of death was 5.9 years (interquartile range, 0.64-13.9 yr) and 114 (72.6%) died after limitation or withdrawal of life support. Mean Human Connection Scale score was 51.4 ± 11.1 for all parents, 52.6 ± 9.0 for White parents, and 47.0 ± 13.7 for Black parents. In multivariable modeling predicting Human Connection Scale scores, race was the only parent or child characteristic in the final model. Human Connection Scale scores were significantly different (-4.56; 95% CI, -8.53 to -0.6; p = 0.025) between the Black and White parents with items about trust, care, and honest communication showing the greatest mean difference. CONCLUSIONS: Among parents bereaved in the PICU, therapeutic alliance with physicians is moderately high. Future research should identify strategies to strengthen therapeutic alliance with Black parents and examine the role of alliance on bereaved parents' health outcomes.
Suttle M; Hall MW; Pollack MM; Berg RA; McQuillen PS; Mourani PM; Sapru A; Carcillo JA; Startup E; Holubkov R; Dean JM; Notterman DA; Meert KL
Pediatric Critical Care 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/10.1097/pcc.0000000000002585" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002585</a>
Quality of life of children with neurological impairment who receive a fundoplication for gastroesophageal reflux disease
Cohen 2006 BMC HSR Refs
2007
Srivastava R; Downey EC; Feola P; Samore M; Coburn L; Holubkov R; Mundorff M; Nkoy F; Desrochers D; James BC
Journal of Hospital Medicine
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/10.1002/jhm.167" target="_blank" rel="noreferrer">10.1002/jhm.167</a>
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