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
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<a href="http://doi.org/10.1097/pcc.0000000000002585" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002585</a>
Views of pediatric intensive care physicians on the ethics of organ donation after cardiac death
Female; Humans; Male; Intensive Care Units; Death; Attitude of Health Personnel; Physicians; Tissue and Organ Procurement; Pediatric
OBJECTIVE: Donation after cardiac death has been endorsed by professional organizations, including the American Academy of Pediatrics as a means of increasing the supply of transplantable organs. However, ethical concerns have been raised about donation after cardiac death, especially in children. This study explores the views of pediatric intensive care physicians on the ethics of pediatric donation after cardiac death. DESIGN: Internet survey. SUBJECTS: Physician members of the American Academy of Pediatrics Section of Critical Care. INTERVENTIONS: Physicians were emailed an anonymous survey consisting of four demographic items and 16 items designed to assess their views on the ethics of pediatric donation after cardiac death. Responses to ethics items were rated on a 5-point scale ranging from strongly disagree to strongly agree. Physicians were also given the opportunity to provide free-text comments regarding their views. MEASUREMENTS AND MAIN RESULTS: Of the 598 eligible physicians, 264 (44.1%) responded to the survey. Of these, 193 (73.4%) were practicing in a transplant center and 160 (60.6%) participated in at least one donation after cardiac death procedure at the time of survey completion. Two hundred twenty (83.4%) agreed or strongly agreed that regarding donation after cardiac death, parents should be able to make decisions based on the best interests of their child. Two hundred twenty-two (84.1%) agreed or strongly agreed that it is not acceptable to harvest organs from a child before the declaration of death, consistent with the Dead Donor Rule. However, only 155 (59.1%) agreed or strongly agreed that the time of death in donation after cardiac death can be conclusively determined. Twenty-nine (11.0%) agreed or strongly agreed that the pediatric donation after cardiac death donor may feel pain or suffering during the harvest procedure. CONCLUSIONS: Most pediatric intensive care physicians agree that the Dead Donor Rule should be applied for donation after cardiac death and that donation after cardiac death can be consistent with the best interest standard. However, concerns about the ability to determine time of death for the purpose of organ donation and the possibility of increasing donor pain and suffering exist.
2013-07
Sarnaik AA; Clark JA; Meert KL; Sarnaik AP
Critical Care Medicine
2013
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Journal Article
<a href="http://doi.org/10.1097/CCM.0b013e31828a219e" target="_blank" rel="noreferrer">10.1097/CCM.0b013e31828a219e</a>
Feasibility and Perceived Benefits of a Framework for Physician-Parent Follow-Up Meetings After a Child's Death in the PICU
OBJECTIVE:: To evaluate the feasibility and perceived benefits of conducting physician-parent follow-up meetings after a child's death in the PICU according to a framework developed by the Collaborative Pediatric Critical Care Research Network. DESIGN:: Prospective observational study. SETTING:: Seven Collaborative Pediatric Critical Care Research Network-affiliated children's hospitals. SUBJECTS:: Critical care attending physicians, bereaved parents, and meeting guests (i.e., parent support persons, other health professionals). INTERVENTIONS:: Physician-parent follow-up meetings using the Collaborative Pediatric Critical Care Research Network framework. MEASUREMENTS AND MAIN RESULTS:: Forty-six critical care physicians were trained to conduct follow-up meetings using the framework. All meetings were video recorded. Videos were evaluated for the presence or absence of physician behaviors consistent with the framework. Present behaviors were evaluated for performance quality using a 5-point scale (1 = low, 5 = high). Participants completed meeting evaluation surveys. Parents of 194 deceased children were mailed an invitation to a follow-up meeting. Of these, one or both parents from 39 families (20%) agreed to participate, 80 (41%) refused, and 75 (39%) could not be contacted. Of 39 who initially agreed, three meetings were canceled due to conflicting schedules. Thirty-six meetings were conducted including 54 bereaved parents, 17 parent support persons, 23 critical care physicians, and 47 other health professionals. Physician adherence to the framework was high; 79% of behaviors consistent with the framework were rated as present with a quality score of 4.3 ± 0.2. Of 50 evaluation surveys completed by parents, 46 (92%) agreed or strongly agreed the meeting was helpful to them and 40 (89%) to others they brought with them. Of 36 evaluation surveys completed by critical care physicians (i.e., one per meeting), 33 (92%) agreed or strongly agreed the meeting was beneficial to parents and 31 (89%) to them. CONCLUSIONS:: Follow-up meetings using the Collaborative Pediatric Critical Care Research Network framework are feasible and viewed as beneficial by meeting participants. Future research should evaluate the effects of follow-up meetings on bereaved parents' health outcomes.
2013-10
Meert KL; Eggly S; Berg RA; Wessel DL; Newth CJL; Shanley TP; Harrison R; Dalton H; Clark AE; Dean JM; Doctor Allan; Nicholson CE; Eunice Kennedy Shriver National Institute of Child Health; Human Development Collaborative Pediatric Critical Care Research Network
Critical Care Medicine
2013
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Journal Article
<a href="http://doi.org/10.1097/CCM.0b013e3182a26ff3" target="_blank" rel="noreferrer">10.1097/CCM.0b013e3182a26ff3</a>
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
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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
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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
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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>
Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Interviews as Topic; Death; Hospitals; Pediatric; Parents/psychology; Patients' Rooms; Environment Design
OBJECTIVE: Many childhood deaths in the United States occur in intensive care settings. The environmental needs of parents experiencing their child's death in a pediatric intensive care unit must be understood to design facilities that comfort at the time of death and promote healing after loss. The purpose of this study is to explore parents' environmental needs during their child's hospitalization and death in the pediatric intensive care unit. DESIGN: Descriptive qualitative study. SETTING: A university-affiliated children's hospital. PARTICIPANTS: Thirty-three parents of 26 children who died in a pediatric intensive care unit. INTERVENTIONS: Semistructured, in-depth, videotaped interviews were conducted with parents 2 yrs after their child's death. Interviews were analyzed by an interdisciplinary research team using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Environmental themes identified through parent interviews included 1) places remembered, 2) spatial characteristics, 3) services for daily living, 4) parent caregiving, 5) access, and 6) presence of people. Places remembered by parents in most detail included the pediatric intensive care unit patient rooms and waiting room. Spatial characteristics pertaining to these places included the need for privacy, proximity, adequate space, control of sensory stimuli, cleanliness, and safety. Parents needed facilities that enabled self-care such as a place to eat, shower, and sleep. Parents also needed access to their child and opportunities to participate in their child's care. Parents described the physical presence of people, such as those who provide professional and personal support, as another important environmental need. CONCLUSIONS: The pediatric intensive care unit environment affects parents at the time of their child's death and produces memories that are vivid and long lasting. Positive environmental memories can contribute to comfort during bereavement whereas negative memories can compound an already devastating experience. Parents' perspectives of the pediatric intensive care unit environment can provide insight for adapting existing spaces and designing new facilities.
2008
Meert KL; Briller SH; Schim SM; Thurston CS
Pediatric Critical Care Medicine
2008
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Journal Article
<a href="http://doi.org/10.1097/PCC.0b013e31818d30d5" target="_blank" rel="noreferrer">10.1097/PCC.0b013e31818d30d5</a>
What influences parents' decisions to limit or withdraw life support?
Child; Female; Humans; Male; Adult; Withholding Treatment; Emotions; Prospective Studies; Middle Aged; Attitude to Death; Pilot Projects; Life Change Events; adolescent; Preschool; decision making; infant; ICU Decision Making; Parents/psychology; Life Support Care/psychology
OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the use of closed-ended questionnaires. We prospectively identified and described parents' self-reported influences on decisions to forgo life support from their children. Deeper understanding of parents' views will allow physicians to focus end-of-life discussions on factors important to parents and help resolve conflicts. DESIGN: Prospective, qualitative pilot study. SETTING: Pediatric intensive care unit of a university-affiliated children's hospital. PARTICIPANTS: A total of 14 parents of ten children whose pediatric intensive care unit physician had made a recommendation to limit or withdraw life support. INTERVENTIONS:: In-depth, semistructured interviews were conducted with parents during their decision-making process. MEASUREMENTS AND MAIN RESULTS: Factors influencing the parents in this study in their decision to forgo life support included their previous experience with death and end-of-life decision making for others, their personal observations of their child's suffering, their perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care. Parents in this study expressed the desire to do what is best for their child but struggled with feelings of selfishness, guilt, and the need to avoid agony and sorrow. Physician recommendations, review of options, and joint formulation of a plan helped parents gain a sense of control over their situation. Parents of eight children agreed to forgo life support and parents of two did not. CONCLUSIONS: Prospective interviews with open-ended questions identified factors influencing parents' decision making not previously described in the critical care literature such as parents' past experiences with end-of-life decisions and their anticipated emotional adjustments and future resources. Inclusion of these factors into discussions is important to parents and may facilitate decisions regarding the limitation or withdrawal of life support.
2005
Sharman M; Meert KL; Sarnaik AP
Pediatric Critical Care Medicine
2005
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Journal Article
<a href="http://doi.org/10.1097/01.pcc.0000170616.28175.d9" target="_blank" rel="noreferrer">10.1097/01.pcc.0000170616.28175.d9</a>
End-of-life decision-making and satisfaction with care: parental perspectives.
Longitudinal Studies; ICU Decision Making
OBJECTIVES: To evaluate parents' perceptions of the process by which decisions are made to limit or withdraw life support from critically ill children, and to evaluate parents' perceptions of their child's death in the pediatric intensive care unit (ICU) and their satisfaction with the care provided. DESIGN: Survey. SETTING: University teaching hospital. PARTICIPANTS: Seventy-eight parents who experienced the death of a child in the ICU between January 1, 1995 and June 30, 1998. INTERVENTIONS: Structured telephone interviews. MEASUREMENTS AND MAIN RESULTS: Forty-one parents recalled discussing the limitation or withdrawal of life support from their child with a physician. Of these, 31 (76%) felt they had just the right amount of authority to make decisions for their child, 8 (20%) felt they had too little, and 1 (2%) felt they had too much. Those satisfied with their decision-making authority had more trust in their physician than those who were dissatisfied (5 vs. 1, p <.001 by Mann-Whitney U test, where 1 = no trust and 5 = complete trust). Factors identified by parents as being extremely important in the decision-making process included physician recommendations, diagnosis, expected neurologic recovery, and degree of pain and suffering. A total of 51 parents were with their child at the time of death. Although none regretted being present, 17 parents who were not present later wished they had been (p <.001, Fisher's exact test). The quality of care provided to parents by the ICU staff was graded (1 = poor; 5 = excellent). Eleven parents (14%) scored quality of care
2000
Meert KL; Thurston CS; Sarnaik AP
Pediatric Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00130478-200010000-00017" target="_blank" rel="noreferrer">10.1097/00130478-200010000-00017</a>
Parental coping and bereavement outcome after the death of a child in the pediatric intensive care unit
Child; Death; bereavement; coping
2001
Meert KL; Thurston CS; Thomas R
Pediatric Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00130478-200110000-00007" target="_blank" rel="noreferrer">10.1097/00130478-200110000-00007</a>
The Collaborative Pediatric Critical Care Research Network: Recent Progress and Future Directions
The American Board of Pediatrics first recognized Pediatric Critical Care Medicine as a separate specialty in 1987. Since that time, the number of pediatric intensivists, pediatric intensive care units (PICUs), and PICU beds has continued to grow. Although mortality in PICUs has declined from more than 8% in 1987 to less than 3% today, many survivors of pediatric critical illness suffer chronic illness or disability. Continued research will generate new paradigms of therapy and advance existing management in order to improve short- and long-term outcomes from pediatric critical illness.
Meert KL; Notterman DA
Pediatric Clinics of North America
2017
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<a href="http://dx.doi.org/10.1016/j.pcl.2017.07.001" target="_blank" rel="noreferrer">10.1016/j.pcl.2017.07.001</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
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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
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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
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doi: 10.1097/PCC.0000000000000614