Guidelines for Emergency Department Intervention
This information is intended for staff members of the Emergency Department who come in contact with the family at the time of initial crisis.
Emergency health care personnel should be responsive to the family's emotional needs and aware of possible causes of death including sudden unexpected infant death (SUID) and sudden infant death syndrome (SIDS). Sudden infant and child death can trigger emotional reactions, which may result in serious psychological problems for parents, surviving siblings, other family members and caretakers. Through a sensitive approach, emergency staff can support family members as they begin to grieve the death of their child.
When an infant or young child presents in the emergency department of the hospital in a lifeless or near lifeless condition, the child is evaluated and emergency resuscitative measures instituted if necessary and appropriate. It is very reassuring for parents to know that everything possible is being done for their child.
Medical Evaluation & Diagnosis
Before speaking with the family, the emergency personnel team should review information provided by parents, caretakers, police and ambulance personnel. This review will assist the health team in determining an appropriate and sensitive approach to discuss the child's death with family members.
In cases of sudden and unexpected infant or child death, causes which should be considered, are:
- Infections: sepsis, meningitis, encephalitis, pneumonia and botulism
- Cardiac disease: myocarditis, congenital heart disease, and sudden arrhythmia
- Aspiration or airway obstruction
- Congenital anomalies
- Genetic disorders
- Seizure disorders
- Sudden infant death syndrome or sudden unexpected death in childhood
Any diagnosis made in the emergency department is tentative pending an autopsy and death investigation unless there is a documented disease or obvious severe injury. The medical examiner, who must be notified regarding the infant's death, makes the final decision concerning the performance of the autopsy and determination of final cause of death.
SIDS is diagnosed on the basis of the absence of diagnostic conditions plus autopsy findings consistent with the typical findings of SIDS (intrathoracic petechiae, mild pulmonary edema, and minor inflammatory changes in the airway.) SIDS is the final diagnosis in about 85% of sudden and unexplained infant deaths.
It is desirable that the doctor in charge of the resuscitative effort or the primary care physician (if present in the emergency department), and the emergency team member who has been assigned to the family be present when the family is informed of the child’s death.
It is important for the physician to express condolences and assure the family that everything that could have been done was done. Compassion and sensitivity are key components when speaking with the family.
The physician may tell the family: "We know your child died suddenly and unexpectedly, but an autopsy must be performed to establish the cause of death." If the family is resistant to the idea of autopsy, the physician or nurse may be able to alleviate anxiety associated with this procedure. First, it is helpful to explain to parents that an autopsy is a medical procedure similar to surgery or an "operation". A specialized physician or pathologist performs this operation in a respectful manner. Second, besides ruling out injury, an autopsy will eliminate or confirm any unsuspected illness or congenital anomaly as the cause of death. Third, in almost all cases in which autopsies are NOT performed, the family may have lingering doubts as to the cause of death.
It may be difficult or impossible for parents to assimilate information during the state of shock usually experienced at this time of crisis. It is important to provide adequate information to families, but only as much as they can handle at this time. Information about the cause of death will be repeated and discussed more thoroughly through counseling provided by the Massachusetts Center for Infant and Child Death.
Be prepared for difficult situations, including extremes in behavior such as screaming, collapsing, or even expressing no emotion. Encourage the parents to talk about the child; use the child’s name. Give permission for next of kin to grieve. Appropriate support during this time may set the tone for the entire process of grieving. Parents should be encouraged to see and hold their child. Spending time with the child assists parents in focusing on the reality of the death while providing an opportunity to say goodbye. Resuscitative equipment may be removed after discussion with the medical examiner. If equipment removal is not possible, it should be made as unobtrusive as possible. An emergency staff member can accompany the parents and support them as they touch and hold their child.
Efforts should be made to contact absent family members or any individual whose presence is important to the family. The presence of a member of the clergy and/or performance of family rituals such as baptism should be discussed. A keepsake certificate can be prepared for the family. The certificate includes the child's full name, date and time of birth, date and time of death, weight and length, a Polaroid picture, a lock of hair if possible, a footprint and a bracelet. These physical reminders give the parents something to look at, hold and touch.
Since many parents are unfamiliar with funeral arrangements, it may be helpful to inform the family of the necessity of contacting a funeral director and/or a member of the clergy for assistance. The funeral director will assume the responsibility for the infant's body after its release from the medical examiner or hospital.
Before the family leaves the emergency room inform them when and by whom they will be told of the autopsy results. Find out where they can be reached - frequently families do not return to their own homes.
Call The Massachusetts Center for Unexpected Infant and Child Death at (617) 414-7437. A staff person is available to provide crisis counseling for families and consultation for hospital personnel. Center staff contacts families shortly after the death to support the family and coordinate bereavement services.
Emergency Team Conference
It may be helpful for the emergency room staff to meet for support to discuss feelings and concerns regarding unsuccessful resuscitation and the family's anguish. The emotional drain on the emergency room staff needs to be taken into account and addressed. It is also helpful to evaluate intervention strategies with families in order to gain a sense of competency. Was the family supported at the time of crisis and was provision made for follow-up care? Appropriate intervention in the emergency room sets the tone for how parents begin to cope with the impact of their child's death. Supportive care in the immediate crisis period in conjunction with long-term follow-up promotes mental health and reduces the incidence of psychiatric morbidity.
Ancillary Services by The Center
The Massachusetts Center for Unexpected Infant and Child Death is responsible for coordinating services to families whose children, under age three, die of sudden infant death syndrome and other causes of infant and child mortality. Funded originally by the SIDS Act of 1974 and subsequently through block grants and private fund raising, The Center has pursued its primary mission of ascertaining the cause of death in sudden infant and child mortality, notifying parents of the medical findings, and offering support to family members during their bereavement. Other services include the provision of educational materials and seminars, as well as compilation of epidemiological data for the Massachusetts Department of Public Health.
Professional Education and Training Education prepares professionals and community members to respond appropriately when an infant or child dies suddenly and unexpectedly. Educational programs conducted by The Center provide physicians and nurses, emergency responders, police officers, hospital emergency department personnel, child care providers, funeral directors, medical examiners, clergy, social workers, students and lay persons with information to assist them in supporting families who have experienced the tragedy of infant or child death. The Center provides training, consultation, and professional support for the nurses who provide home visiting and bereavement support for affected families. The Center publishes an annual newsletter, guidelines for hospital emergency department personnel, and a bereavement counselor training manual and several brochures.
A Provider's Emotional Response
Bonding occurs between the baby and the child care provider. Therefore a death can cause feelings of grief much like those felt by the parents. Because providers essentially are an extension of the baby's family, the death is a wrenching and emotional event for them as well.
Feelings of anger, loneliness, sadness, guilt, and loss of confidence are common, frequent, and at times unbearable. Other grief reactions include shock, denial, flashbacks, periods of physical pain or illness, self-doubt, fear of caring for other infants, and depression. Both providers and parents often are distressed and exhausted by the depth of these emotions. These feelings are normal, but it is important to note that if they last for an unusual length of time or are extremely severe, professional help may be needed. Some providers and parents describe feeling numb and as if they were dreaming. Some interpersonal relationships may strengthen and others may weaken.
The impact of the death on the providers' family also can be tremendous. Family members may not be able to understand the depth of suffering because, in most cases, the childcare provider is the only family member who was close to the baby and the parents. In the case where the provider's own children were present at the time of the death, the event becomes even more upsetting.
“When a child dies … while in daycare, the impact can be devastating. Daycare workers involved with the infant may experience an intense grief reaction. For weeks following the death, the care provider may experience an intense loneliness or sadness whenever anything triggers the memory of the infant.” Judith Henslee, The Daycare Worker: Sharing the Pain of Loss
The provider may have difficulty talking to the baby's parents. Often, the provider was the last person to see the baby alive. The provider had to call the parents and explain that something was terribly wrong with their child. The provider is usually the one who hands over the baby's belongings to the grieving parents. The parents' emotions will vary. They may blame the provider for the baby's death but they also could feel guilty and sorry for the provider. The parents and the provider may find themselves repeatedly reviewing every detail about the baby's death.