Introduction

Deaths occurring in the emergency department (ED) present unique challenges for the clinician, particularly if the patient is a child.^1,2

The unexpected death of a child undoubtedly brings about the most severe and shattering grief response for the child’s parents.³ Because the loss is unexpected and involves someone so young and so intrinsically a part of self, the grief response of parents may be very painful and prolonged. The death of a child must be viewed as a tragedy for the entire continuum of family and friends. Additionally, paediatric deaths are frequently personalised by ED staff, and hence have broad implications for the whole ED clinical team.

In large hospital EDs, particularly in urban areas, there is rarely a pre-existing relationship between the health professionals and the patient/family. While this facilitates the professional detachment needed for ED staff to function effectively, it creates inherent voids in the ability to support grieving relatives and friends. In smaller hospitals like those found in rural and regional communities, a pre-existing relationship may exist, potentially lowering communication barriers but bringing out other stresses and strains for ED staff.

Good communication with family members must be established early and maintained throughout. This is best left to an experienced member of the staff. There is evidence to suggest that junior medical staff do not feel adequately trained in talking with parents in regards to end-of-life care matters.⁴ Due consideration for the comfort of the family should be at the forefront of the minds of clinical staff at all times.

The resuscitation process

Parents usually benefit from being present during the resuscitation process.⁵ It is therefore unacceptable to discourage their presence unless they are interfering with, and compromising, the resuscitation itself. Family members watching monitors and seeing the trace ‘go flat’ experience much alarm and distress, but this should not be seen as a reason to exclude them.⁶

The resuscitation process can be traumatic for parents and family members, requiring ongoing communication and interpretation of events. It should be expected that parents will be visibly upset and distressed during this period. A staff member, often a social worker, should be assigned to support the family, to answer any questions about the procedures and responses, and to prevent distraught family members from impeding the resuscitation.⁷ The ED medical officer in charge must communicate with this staff member and family members about the progress of the resuscitation. Viewing the resuscitation efforts allows the family to see a caring and competent staff, in control of their emotions, doing their best to save the child’s life.

Where parents choose not, or feel unable, to be in the resuscitation room, it is essential that they be kept informed of progress. Panic, fear and a sense of isolation have been noted as the main responses of relatives who remain outside the resuscitation room.⁶ Small, dull rooms with no windows or natural light were seen as heightening the sense of isolation, disconnectedness and fear for those family members unable to bring themselves to view the resuscitation.

It is important to be skilled in early recognition of the signs of trauma responses by parents, such as dissociation, as this can affect long-term adjustment. A social worker or other designated professional should ideally be available to provide support for parents and act as an advocate during what is likely to be an overwhelming and bewildering process. The social worker is also likely to be the main staff member to have an ongoing role after death has occurred and the family has left the hospital.

Talking to parents and families

When talking with the family about the child’s deteriorating condition, give details in a simple, straightforward and accurate manner. Provide the information using appropriate language. Answer questions and be responsive to needs and concerns.

When death has occurred, or is imminent, it is essential to have identified the relevant family members so that discussions are with the appropriate individuals. At the point of death, the medical officer in charge of the resuscitation should advise those family members present in the resuscitation room or in a private, quiet location. Research has indicated that families appreciated a high level of physician involvement.⁸

Clear, distinct and accurate information is essential, and medical jargon should be avoided. It is very important to state initially that the child has died. This is the piece of information that the parents will most want clarified. It is then desirable to provide a brief chronology of events, while reassuring the family that everything was done and that the child did not suffer pain.

Sometimes family members are not present at the time of death. If practicable it is best to delay notification of death until it can be done in person.⁹ If the family cannot readily access the ED, telephone notification may be necessary. A survey of survivors suggested that if delay in personal notification was greater than 1 hour, telephone notification may be appropriate.¹⁰ However, it is obviously difficult to be sensitive to the family’s response via a telephone, and there may be limited ability to provide immediate support. Ensure that the family is safe to transport themselves and that ongoing support options have been explored for those family members unable to make it to hospital.

If family members were not present at the hospital it is likely that they will have many questions related to the process, potential suffering, and any awareness by the child of the event. These may be asked either over the telephone or upon arrival. If parents arrive ‘too late’, this can create a further burden of guilt because they were not present.

Family members experiencing significant grief are likely to struggle with the integration of the information that they are being given and with the communication of any questions that they might have. They may need to revisit the same questions and information repeatedly in order to try to make sense of the event.⁶

It is important to allow parents and family members time to examine the implications of the loss, and to begin the process of searching for some answers and meaning in the midst of the event. It is also important to assist them to mobilise resources from their social, cultural and religious communities to help them to deal with their grief.

There can be a temptation to offer sedation to grief-stricken parents. This is often requested by relatives distressed by observing the parents’ pain. Grief is a normal process, which is rarely helped by pharmacological intervention.

Junior medical staff are often involved in resuscitations, and it is essential that they have received some training/education to help them handle the unexpected death of a child. A number of programs have been described, which have been found to be useful in preparing staff to deal with loss in an effective manner, from the perspective of both the family and staff members.^11–14

Laying out of the child

Where parents want to ‘view’ or spend time with their deceased child, it is important to facilitate their wishes (having due regard to the possibility that the death may need to be referred to the coroner and hence care not to interfere with evidence). All tubes inserted during the resuscitation process (endotracheal tubes, intravenous cannulae, drains, etc.) should be removed, unless the medical officer in charge considers that the placement of a tube may have been associated with an adverse event. All wounds and cannula sites should be dressed to avoid leakage of bodily fluids. The child’s face and exposed areas should be bathed/cleaned and any soiling removed.

The impact of the death can often cause an overwhelming sense of numbness and helplessness, diminishing the ability to self advocate. Therefore, it is important to be proactive with family members and ask how much they want to be involved with the bathing and laying out of the child, and about any specific cultural or religious practices that they would like observed.

It can often be useful to obtain mementos of the child. Photographs, a lock of hair, or a foot/hand print may become important mementos along the grieving journey. It is recommended that hospital EDs have access to such items as a camera, memento books and bereavement packs to give to families.

There are specific requirements in place for deaths that must be referred to the coroner. These may limit the process of ‘laying out’ the body, and require that family members may not be left unsupervised with the child. ED staff need to balance the needs of grieving family members with their legal responsibilities to the coroner.

Viewing the body – quiet suite

Most available evidence strongly suggests that seeing the body of the deceased is an important part of accepting the reality of death.^15,16 This includes not only seeing, but also being able to touch and hold the loved one. It is helpful to describe to relatives what they are going to see prior to viewing the body, especially if there are trauma-related injuries.⁶ Viewing the body can also relieve anxieties about mutilation, signs of trauma, or that the person was in pain when they died.¹⁶ A parent or family member’s preference not to spend time with the child should also be respected.^.

Most large paediatric hospitals have a ‘quiet suite’ or ‘family room’ to facilitate parents spending time with their deceased child. This can allow a private ‘good bye’ and time to reflect. It can also allow time to create an image of the child as dead, altered from the image of the living child.¹⁶ The importance of the family/relatives’ room cannot be overemphasised – privacy and basic facilities are essential.

Subsequently, additional relatives/ friends may arrive at the hospital. This can often lead to heightened distress for parents as they try to explain the events that have led to the child’s death, hence taking them back to the initial traumatic stages. It can also be a useful process. By reviewing events, parents may build a clearer picture and ‘fill in the blanks’ as they retell their story.