When a Child Dies in the PICU Despite Ongoing Life Support
death; treatment withdrawal; child; Child; family; human; human relation; long term care; Only Child; palliative therapy; pediatric intensive care unit; psychology; resuscitation; terminal care; treatment outcome; uncertainty
OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We describe three common clinical scenarios when curative or life-prolonging goals of care are pursued despite a high likelihood of death. We explore the challenges to providing high-quality end-of-life care in this setting. We describe possible perspectives of families and ICU clinicians facing these circumstances to aid in our understanding of these complex deaths. Finally, we offer suggestions of how PICU clinicians might improve the care of children at the end of life in this setting. <br/>CONCLUSION(S): Merging curative interventions and optimal end-of-life care is possible, important, and can be enabled when clinicians use creativity, explore possibilities, remain open minded, and maintain flexibility in the provision of critical care medicine. When faced with real and perceived barriers in providing optimal end-of-life care, particularly when curative goals of care are prioritized despite a very poor prognosis, tensions and conflict may arise. Through an intentional exploration of self and others' perspectives, values, and goals, and working toward finding commonality in order to align with each other, conflict in end-of-life care may lessen, allowing the central focus to remain on providing optimal support for the dying child and their family.
Lewis-Newby M; Clark JD; Butt WW; Dryden-Palmer K; Parshuram CS; Truog RD
Pediatric Critical Care Medicine
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/10.1097/PCC.0000000000001611" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001611</a>
Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit
child; terminal care; article; human; palliative therapy; medical decision making; pediatrics; clinical article; school child; physician; pediatric intensive care unit; intensive care; medical ethics; adolescent; drug therapy; ethical dilemma; clinician; special situation for pharmacovigilance
Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician's primary ethical duty to the paediatric patient. This approach does not consider a clinician's potential duty to the patient's family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions.
Kingsley J; Clark J; Lewis-Newby M; Dudzinski DM; Diekema D
Journal of Medical Ethics
2023
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/10.1136/jme-2023-108912" target="_blank" rel="noreferrer noopener">10.1136/jme-2023-108912</a>
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>