When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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Appendix F: End-of-Life Care in Emergency Medical Services for Children
Appendix F: End-of-Life Care in Emergency Medical Services for Children
Pages 580-598
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From page 580... ...
of anticipated loss associated with chronic or long-standing illness. This discussion is followed by an examination of the roles of the providers of EMS C vis-a-vis end-of-life issues with recommendations for Division of Government and Public Affairs, Children's National Medical Center; George Washington University School of Medicine, Washington, D.C.; Office of the State Medical Director, Maryland Institute for Emergency Medical Services Systems, Baltimore.
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From page 581... ...
The care of children in these systems was largely integrated into adult models using principles and approaches extrapolated from adult experience.2 Emergence of Emergency Medical Services for Children In the 1980s, the first subspecialty training programs in pediatric emergency medicine began in Philadelphia, Kansas City, and Washington, DC. Simultaneous to the emergence of these fellowship programs, Senator Daniel Inouye (D-HI)
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From page 582... ...
course has incorporated a new module entitled "Coping with the Death of a Child."~2 i3 Also, the Committee on Pediatric Emergency Medicine of the AAP, in conjunction with the Pediatrics Committee of the American College of Emergency Physicians, recently issued an update of its policy statement, supported by a technical report, on the death of a child in the emergency department. In updating its recommendations, the AAP affirms a commitment to family-centered and culturally competent end-of-life care and places the onus of responsibility for organizing and coordinating the response to a child's death on the emergency department (ED)
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scans demonstrate profound hypoxic brain injury and the child progresses to brain death. Discussions in the intensive care unit (ICU)
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First, the number and type of potentially involved personnel is larger and more diversified. Prehospital providers in EMS, fire and rescue, law enforcement, and public safety, as well as hospital-based providers in EDs, on surgical teams, and in ICUs may have important interactions with acutely dying children and their family members.
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From page 585... ...
Each of these is discussed briefly here as essential consistencies across all pediatric deaths. Facilities Families of dying children need facilities that give them the space and time that they need to be with their child, to have privacy, to include supportive friends and family, and to grieve as they see fit.
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From page 586... ...
Whenever possible, this should be provided by those who know the family best and are chosen by the family to be present during this difficult time.29 On the other hand, the medical context may be unfamiliar or frankly uncomfortable for the family pastor or the child's grandmother. There is a well-recognized and important role for members of the care team that include social workers, child-life workers, chaplains, and the nurses and physicians caring for the child.
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From page 587... ...
Some children die in the field, others never leave the ED, most will be admitted to the intensive care unit. In a period of hours or days, the parents will need to progress from their ordinary life to a death vigil.
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The unexpected nature of the precipitating event necessarily engages a wide range of professionals who can potentially become involved in care of the child from response in the field, through transport to the emergency department, to management in the intensive care unit or operating room. Death may occur anywhere along the care continuum, with families acutely encountering individuals with differing backgrounds, training, and exposure to this critical aspect of a child's care.
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There has been a paucity of research on EMS providers' experience and training regarding this topic, but from survey data it is clear that providers do not fee! that they receive adequate preparation for end-of-life issues in the circumstances of sudden or unexpected death.42 According to national guidelines, the most highly skilled ALS providers receive only 6-30 hours of pediatric training, and the majority receive no training at all on any aspect of end-of-life care.43 EMS providers report that they are uncomfortable with this weighty responsibility and indicate that they desire more education and training by their peers in the form of lectures, videos, and roleplaying to prepare them better.44 Future research directives should include the critical examination of the structural context of the death of a child in the field and the preparedness of those providing care.
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From page 590... ...
Current bereavement care guidelines for social workers include encouraging family members to talk about the patient and the events that led to the child's being brought to the ED, assessing the family's strengths and weaknesses, and explaining the basic roles of the various team members. If there is a family presence policy, the social worker also prepares the family for entering the resuscitation bay.58~6i After death notification occurs, this individual is then charged with managing the aftermath, from reassuring the family that everything possible was done to save the child to explaining autopsy and funeral procedures.
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From page 591... ...
Emergency nurses also play an important role, since much of their training emphasizes family-centered care.69 In some instances, nurses share the social worker's role as described above and may be the best qualified to explain the clinical events to the family in understandable terms.70 Pediatric nurses can be particularly instrumental in helping siblings of the deceased child, because they have some understanding of cognitive developmental stages and can help a child of any age understand what death really means.7i While this facilitation can be difficult in the ED due to time constraints and logistic pressures, the pediatric intensive care unit (PICU) nurse is in a more optimal position to care for family members as he or she
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From page 592... ...
There may be individualized in-service presentations at certain centers, but the formal training that nurses and physicians receive, if any, is in undergraduate professional or postgraduate training and not specific to the ICU environment. The principles that apply to sudden and unexpected death in the PICU are similar to those that apply in the ED.75 Other Out-of-Hospital and Community-Based Professionals In most jurisdictions, the sudden and unexpected death of a child occurring in the field or in the emergency department is considered a coroner's case requiring an autopsy by the local medical examiner in the jurisdiction of death pronouncement.
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From page 593... ...
It is uncertain as to how well survivors are served by community-based bereavement and mental health services, but increased media exposure to the events of a high-profile and/or catastrophic acute loss accentuates the need for appropriately trained individuals and support personnel to be available at a community level. SUMMARY AND RESEARCH DIRECTIONS Regardless of provider type, from first responder in the field to attending physician in the ED or PICU, there appears to be a lack of decisive evidence regarding how well families of children who die are served, and there is clearly a need for more formal training for all staff at all levels.
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From page 594... ...
Poor and irreversible neurologic outcomes are the overwhelming norm. Resuscitating the heart in an otherwise brain-dead child can generate a cascade of unalterable events for families and providers including transport to a pediatric intensive care unit and decisionmaking about issues such as withdrawal of support, declaration of brain death, and organ donation.
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4. Institute of Medicine, Committee on Pediatric Emergency Medical Services.
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Parental coping and bereavement outcome after the death of a child in the pediatric intensive care unit. Pediatr Crit Care Med 2001;2:324328.
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Bach KJ. Critical incident stress management for care providers in the pediatric emergency department.
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From page 598... ...
Thompson A Ethical issues in the pediatric intensive care unit.
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