Celeste A. Tarantino
• The death of a child in an emergency department (ED) has profound effects on physicians as well as surviving family members.
• The language used when telling parents their child is dead should be direct and nonjudgmental.
• Parents and family members should be offered an opportunity to hold and spend time with their child after the death.
• Immediate notification of an organ donation authority is required.
• Most cases of unexplained pediatric deaths require an autopsy.
The death of a child is likely the most tragic and devastating event any parent can experience. The sudden and unexpected death of a child is life-changing and its impact on the parents, siblings, and other family members is significant. They may have little or no time to say “goodbye” or “I love you” to their child and they may have to explain to other children about the death of their sibling. It is the responsibility of the emergency department (ED) healthcare team to deliver quality medical care and acknowledge and address psychosocial and spiritual care for parents, siblings, and family members throughout the treatment.
The death of a child in the ED may have a profound effect on those caring for the child as well. Informing parents and family members of their child’s death impacts the entire healthcare team who may witness multiple traumatic and unexpected deaths of children over the course of their professional careers. Healthcare providers have to put their own feelings aside to care for the patient, and offer emotional support for the parents and family members. It may be minutes or hours later before the death of a child has an impact upon them and they are afforded time to deal with their own feelings.
Emergency physicians may feel guilty or inadequate after a failed resuscitation, even when they know the child had little to no chance of survival. This feeling may linger throughout the remainder of their entire shift and impact their ability to focus on the care of other patients. Emergency physicians often lack formal training in how to deliver bad news to families or death and dying; especially how to tell parents their child has died.
PATIENT- AND FAMILY-CENTERED CARE AND PARENTAL PRESENCE DURING RESUSCITATION
Physicians are looked to as the healthcare team leader and bear responsibility for involving the family in decisions and delivering bad news. In the scenario of an acute resuscitation the physician may not be immediately available to the parents or only intermittently available. Another member of the healthcare team should be available to the family to provide emotional and spiritual support as needed. Due to lack of prior relationships, limited training of physicians, and the unexpectedness of childhood death, it is crucial to include personnel skilled in identifying and addressing the psychosocial and spiritual aspects that arise during the course of these devastating events, such as child life specialists, chaplains, and social workers.1
The American Academy of Pediatrics policy statement, “Family-Centered Care and the Pediatrician’s Role,”1–3 advocates for a family-centered approach to the care of the dying child. Historically parental presence in the trauma bay during resuscitation was not encouraged and even forbidden. Recent studies have favored and encouraged family presence during resuscitation of the child who presents in cardiopulmonary arrest. The Report on the National Consensus Conference on Family Presence During Pediatric Cardiopulmonary Resuscitation and Procedures recommendations4 include: (1) consider family presence as an option for families during pediatric procedures and cardiopulmonary resuscitation, (2) offer family presence as an option after assessing factors that could adversely affect the interaction, (3) if the family is not offered the option of family presence, document the reasons why, (4) always consider the safety of the healthcare team, (5) develop in-hospital transport and transfer policies and procedures for family presence, such as family member definition, preparation of the family, handling disagreements, and providing support for the staff, (6) obtain legal review of policies, (7) education in family presence in all core curricula and orientation for healthcare providers
SUDDEN UNEXPECTED INFANT DEATHS AND SUDDEN INFANT DEATH SYNDROME
Sudden unexpected infant deaths are specified as deaths in infants younger than 12 months that occur suddenly, unexpectedly, and without obvious cause in the ED. These cases require a complete investigation of the environmental circumstances at the time of the death and a forensic autopsy. In the United States, approximately 4500 infants die suddenly of no immediately obvious cause every year; approximately 2500 of these deaths are due to sudden infant death syndrome, the leading cause of all infant deaths.5–7 Despite declines in SIDS rates following the American Academy of Pediatrics 1994 “Back to Sleep”8 campaign, SIDS is the leading cause of death among infants aged 1 to 12 months. The peak incidence is between 2 and 4 months of age and 90% occur within the first 6 months. Boys are more likely to die than girls at a ratio of 60:40. Younger maternal age, lack of prenatal care, low birth weight, prone sleeping position, overheating, and preterm birth are all risk factors for SIDS.9 In the United States, African Americans and Native Americans have SIDS rates that are two to three times the national average irrespective of socioeconomic status.6
SIDS should not be used as an ED diagnosis. It is more accurate to use “sudden unexpected infant death” if there is no obvious signs of injury or trauma or information to explain the death. SIDS is a diagnosis of exclusion. The differential diagnosis for a sudden unexplained infant death includes sepsis, pneumonia, myocarditis, congenital heart defect, cardiomyopathy, arrhythmia, prolonged QT syndrome, poisoning, metabolic disorders, hyper- or hypothermia, nonaccidental trauma, and suffocation.6,10,11
The typical presentation to the ED is an infant arriving via ambulance with CPR in progress after he/she has been found unresponsive after being put to sleep by a parent or caregiver. It is usually unclear how long the infant has been in cardiopulmonary arrest. The infant should be thoroughly examined for any signs of congenital anomalies, bruising, injury, or evidence of nonaccidental trauma. A postmortem skeletal survey should be obtained.
TALKING TO THE FAMILY/THE INTERVIEW
A child who presents to the ED in cardiopulmonary arrest or after a life-threatening illness or injury may or may not be accompanied by their parents. The ED staff should anticipate the arrival of the patient and the parents (who may arrive separately). Upon arrival, the parents are likely going to be anxious and distressed and should be met by someone who is comforting. In the situation when the parents arrive first they should be greeted and placed in a private, quiet room, with adequate seating and lighting, tissues, and access to a phone for local and long distance calls. A staff member should be designated to communicate with the parents. Ideally this is an individual who can provide emotional support for the family and is trained in delivering bad news. This could be a nurse but more likely would be a social worker or chaplain. In addition, there may be other young children to consider if the parent is alone initially. It may be necessary to provide someone, such as child life specialist, to entertain siblings.
A member of the healthcare team should explain the scenario; preparing them for how many people might be there, what their child may look like, and how the process works. The parents should be told of the resuscitation as soon as possible and interviewed including details about the child’s medical, family and social history, and about the events leading up to their child’s demise. At some point it is important for the ED physician to speak with the family to get information and update the parents on the child’s status.
If the resuscitation is unsuccessful, it is the responsibility of the ED physician to tell the parents that the child has died. In a private setting, the physician should be sitting facing the parents making eye contact. Using a calm voice, the parents should be informed in a direct manner that everything was done to save their child but that he or she has died. It is important to use as little medical terminology as possible for fear they will not understand. Instead of using phrases such as “passed,” “gone to a better place,” or “gone,” the physician needs to be clear and direct with the parents. If an interpreter is used then they should stand behind the physician, so that the physician eye contact can be maintained with the parent. The initial reaction will be one of shock and disbelief. Parents should be given ample time for grieving and questions.
One study12,13 interviewed parents of those who had experienced the sudden death of a child. They found five themes related to how the parents processed death: (1) the need to reconstruct the death scene of the child; (2) feeling of a loss of control and shattering of the world parents knew before the death; (3) the need to say goodbye; (4) the attempt to make sense out of the death and find meaning in it; and (5) attempts to carry forward a new relationship with their deceased child in their lives. The types of interventions parents found helpful following the death of their child included providing assistance, providing information, and displaying compassion and empathy. A study by Lehman et al.14 found that the most common helpful support was contact with others, the opportunity to ventilate, expression of concern, and presence (“being there”). The most common unhelpful support was giving advice, encouraging recovery, rude remarks or behavior, minimization or forced cheerfulness, and identification of feelings (“I know how you feel”). A survey study by Leash15 asked participants to rank the relative importance of four key elements in the death notification process—where, how, and when they were told of the death and who told them. How they were told was considered the overall most important variable, followed by when they were told and where they were told. The least important variable was who told them of the death.
CARE OF THE FAMILY
Parents and family members should be offered an opportunity to hold and spend time with their child after the death. The child’s body should be cleaned and any resuscitation equipment removed unless prohibited by law. The child should be appropriately draped and infants wrapped in a blanket. Due to circumstances of the death, law enforcement may be present preventing them from actually holding their child. Clergy and social workers should be available to offer pastoral support and additional resources. Families may need to contact other family members. In addition, siblings, grandparents, aunts, uncles, or other family members may want to see the child or offer support to the family. The family should be given a reasonable amount of time to spend with their child. ED personnel should be trained in making a momento for the family, which may include locks of their child’s hair, hand or foot imprints, or plaster molds. The child’s personal belongs should be returned to the parents as permitted by law enforcement.
Immediate notification of an organ donation authority is required. Most cases of unexplained pediatric deaths require an autopsy. A designated individual trained in having these discussions should explain this to the parents. The patient’s personal physician should be notified about the death and may want to speak to the parents.
Pastoral support should be offered for the family. They can help with providing spiritual support as well as making arrangements for their child’s body. Offering the family an opportunity to discuss autopsy results at a later date should be provided.
CARE OF THE EMERGENCY DEPARTMENT STAFF
Studies confirm feelings of sadness by clinicians after the death of a patient.16 The sadness may be from the death of the child but also from interactions with the grieving parents. Papadatou and Bellali define grief as “the process that comprises a person’s grief responses and coping strategies in his or her attempt to adjust to an experience that is perceived as a loss and accommodated it into one’s life.17” There may be collective grieving within the healthcare team and each individual deals with it uniquely. For the healthcare team, death may represent: the loss of a bond that was developed with the child; the loss of a loved one; the inability to achieve one’s professional goals of curing or saving a child; the loss of one’s assumptions about death since childhood death is perceived as reversing the order of nature; the emergence of a previous traumatic loss; the imagined loss of a loved one; and/or the awareness of one’s mortality.18 Grief is expressed in a wide range of emotional and physical responses.2,5,13 Some caregivers grieve privately while others prefer to grieve seeking the support of colleagues, friends, and family.17,18 Variables that affect the grieving process for healthcare workers include personal, patient-family, situational, work-related, and sociocultural.18 Caregivers who are unable to deal with the grief are at risk for complications including burnout and compassion fatigue. Personal coping strategies used by healthcare providers include humor and engaging in self-care activities including exercise, adequate sleep, self-reflection, and relaxation techniques as well as maintaining a healthy balance between work and their personal lives. Institutional resources available to healthcare workers include follow-up phone calls to bereaving individuals, periodic discussion groups, individual peer support, debriefing sessions, and therapy service availability.
Providers should consider family presence during resuscitation.19 The death of a child presents a diversity of challenges to ED physicians and the remainder of the healthcare team in providing care to the child, communicating and delivering the news to the parents, as well as care and support for the entire ED staff including themself. The content, delivery, and way in which the news is delivered will have a lasting impact on the parents forever. In addition, other ED caretakers may have lasting effects from traumatic death of children, which may impact their ability to care for others and themselves. ED physicians and caretakers should take opportunity for reflection and growth to be better prepared for the future.
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