Epidemiology of Death in the PICU at Five U.S. Teaching Hospitals*
retrospective studies; cause of death; child mortality; PICU
OBJECTIVE: To determine the epidemiology of death in PICUs at 5 geographically diverse teaching hospitals across the United States. DESIGN: Prospective case series. SETTING: Five U.S. teaching hospitals. SUBJECTS: We concurrently identified 192 consecutive patients who died prior to discharge from the PICU. Each site enrolled between 24 and 50 patients. Each PICU had similar organizational and staffing structures. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The overall mortality rate was 2.39% (range, 1.85-3.38%). One hundred thirty-three patients (70%) died following the withholding or withdrawal of life-sustaining treatments, 30 (16%) were diagnosed as brain dead, and 26 (14%) died following an unsuccessful resuscitation attempt. Fifty-seven percent of all deaths occurred within the first week of admission; these patients, who were more likely to have new onset illnesses or injuries, included the majority of those who died following unsuccessful cardiopulmonary resuscitation attempts or brain death diagnoses. Patients who died beyond 1-week length of stay in the PICU were more likely to have preexisting diagnoses, to be technology dependent prior to admission, and to have died following the withdrawal of life-sustaining treatment. Only 64% of the patients who died following the withholding or withdrawing of life support had a formal do-not-resuscitate order in place at the time of their death. CONCLUSIONS: The mode of death in the PICU is proportionally similar to that reported over the past two decades, while the mortality rate has nearly halved. Death is largely characterized by two fairly distinct profiles that are associated with whether death occurs within or beyond 1-week length of stay. Decisions not to resuscitate are often made in the absence of a formal do-not-resuscitate order. These data have implications for future quality improvement initiatives, especially around palliative care, end-of-life decision making, and organ donation.
2014-09
Burns JP; Sellers DE; Meyer EC; Lewis-Newby M; Truog RD
Critical Care Medicine
2014
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/CCM.0000000000000498" target="_blank" rel="noreferrer">10.1097/CCM.0000000000000498</a>
Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations
Child; Humans; infant; Parent-Child Relations; Questionnaires; Professional-Family Relations; Communication; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; PedPal Lit; decision making; infant; Newborn; Parents/psychology; Intensive Care Units; Palliative Care/psychology; Terminal Care/psychology
OBJECTIVE: Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS: This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS: Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS: Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
2006
Meyer EC; Ritholz MD; Burns JP; Truog RD
Pediatrics
2006
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
Parental perspectives on end-of-life care in the pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Terminal Care; Adult; Withholding Treatment; Prognosis; Questionnaires; Boston; Pain; Quality of Health Care; quality of life; Pediatric; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Parents/psychology
OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.
2002
Meyer EC; Burns JP; Griffith JL; Truog RD
Critical Care Medicine
2002
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/10.1097/00003246-200201000-00032" target="_blank" rel="noreferrer">10.1097/00003246-200201000-00032</a>