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.

The grief response

Grief is a normal reaction accompanying death. The severity of the grief response parallels the severity of the loss.

Perhaps the most well-known model of describing the process of grief is the ‘stages’ model with its clearly defined stages of shock, denial and isolation, anger and envy, bargaining, depression and acceptance.¹⁷ These stages should not be seen as linear or rigid. Individuals can move back and forth between the stages or may appear ‘stuck’ in a stage. Although the ‘stages’ model is the most well known and can be a useful guide, there are a number of other models of grieving including psychodynamic,¹⁸ attachment,^19,20 social constructionist,²¹ cognitive/behavioural,^22,23 and personal construct.²⁴ Good practice requires being open and flexible, adapting to the needs of the grieving family as opposed to trying to fit the family into any particular model. It is important not to pathologise individuals whose grief response does not fit neatly into a particular model of grief.²⁵

The death of a child provokes the most intense form of bereavement. It is certain to alter the course of the parents’ lives, their relationship with each other and with others. Losing a child is more than losing a relationship. For a parent it is losing part of their self, their present and their future. Many parents experience a loss of meaning in their lives and may never fully recover from the impact of their child’s death.²⁰ A child’s death is not a singular loss, but produces a ripple effect overwhelming all aspects of the family and environment. Parents, and even the extended family, may feel that they have failed, irrespective of the nature of the death and level of love, nurturing and caring that existed during the child’s life.^16,26,27

The parental relationship faces severe stress following the death of a child. It can pull a dysfunctional relationship further apart, or glue a functional one closer together. Adverse impacts on the relationship can occur through the real or perceived apportioning of blame by one parent to the other. This can occur where a child died while under the specific supervision of one parent, or one parent was simply not present when a critical event occurred.

Siblings of the deceased child will also experience a significant grief reaction. Not only must they manage the actual loss of their deceased sibling, but they must also cope with the loss of their normal family environment. Their parents will be struggling to cope with their own grief, and thus will be less emotionally available. The cognitive developmental level of a sibling has a significant bearing on their capacity to understand concepts of death like permanent, irreversible, inevitable, universal.²⁸ Regardless of how siblings understand and express their grief, it is critically important to remember that they are part of the social context in which the death has occurred. Their needs for explanation and support are just as important as the needs of their parents.

The death of a child does not occur in isolation, but rather it occurs in a social context that includes many variables. The main ones are parental coping capacity and skills, family and relationship functionality, social networks, parental physical and mental health issues, education, socioeconomic status, and, importantly, any real or perceived parental responsibility in the death of the child. Thus the broader social context will have relevance to how parents and extended family members manage the impact of the child’s death.²⁶ Any available psychosocial assessment or information, such as that provided by the ED social worker, should be factored into the management of the family.

Support of the family

Generally, parents are completely unprepared for the impact of their child’s death as they have no prior knowledge or experience to draw on.²⁹ Arranging support is essential, and early social worker involvement is highly desirable. Parents and other family members must be provided with information about ‘normal’ grieving, and should be linked to appropriate resources. This can take the form of written information packs that parents can take away, and which they may choose to read at a later time.^30,31 Referral information should be readily available for support groups with particular expertise relating to the death of a child such as Sids & Kids,³² SANDS Australia,³³ Compassionate Friends,³⁴ and other relevant organisations. The extent of involvement of support by ministers of religion will depend on the wishes of and the religious commitment of the family. Ideally there should be a protocol that facilitates ready access to this material.

Practical assistance with arrangements at the time of the child’s death, including organising family support, funeral and financial assistance, should be offered to families as appropriate, while being sensitive to the social and cultural environment of the family.

Cultural implications

Many cultures have specific rituals and practices concerning death. It is critical to listen to the family members and be guided as much as possible by their requests. Some of these rituals may require modification when the death of a child has been referred to the coroner’s office. Sensitivity is essential.

It is difficult to make broad statements about the cultural practices related to death and dying in indigenous (Aboriginal and Torres Strait Islander) communities, because across Australia there are different practices and rituals. Examples of the kinds of cultural practices and rituals to be aware of include:

The Maori culture of New Zealand traditionally has family members present with the body from the time of death through interment. This maintains the harmony of the child, assisting the decedent to join their ancestors. Family members will want to be part of the ‘laying out’ of the body, washing, dressing, etc.

Other practices reflecting different cultural belief systems that may need to be considered include parents needing to remain with the body 24 hours after the death, caring of the body by staff of the same gender as the deceased child, laying the body to face a certain direction (Mecca), special roles for specific religious/spiritual leaders, and the burning of incense/candles.

When working with families from different cultures following the death of a child, it is important to be guided by custom, ritual, experience, and the family’s cultural environment.

Legal issues

Each state and territory will have subtle variations as to the legal requirements for the documentation and handling of the body of a deceased. An up to date protocol should be available to ensure that proper procedures are followed.

A life extinct form will need to be completed by one of the attending ED medical staff. However, it will also be necessary to decide whether or not a death certificate can be completed. If the patient was known to the hospital and the death was not unexpected, the child’s usual physician may be prepared to sign a death certificate. This physician may also discuss with the parents the option of performing a hospital-based autopsy.

Usually the death of a child in the ED is not anticipated, and hence becomes a coroner’s case (see Chapter 19.2 on Forensic paediatrics and the law). For a coroner’s case, only a life extinct form can be completed, laying out of the body will be restricted to spot cleaning, the local police must be notified, and parents must not be left unsupervised with the body. It is desirable for the family to formally identify the child’s body in the presence of the police. Otherwise identification will have to be performed later and probably at the morgue, a process likely to increase family distress. All medical notes, investigations, observation sheets, etc., should be provided to the police when they depart with the child’s body for the morgue. Full and accurate documentation of all events in the patient’s hospital chart is essential. This should include the date and time of death, the observations that specify that the child is clinically deceased, any relevant history surrounding the circumstances of the child’s death and any relevant conversations held with the parents or family members. There are potentially legal consequences following any death and the forensic issues need to be considered. For example, child abuse remains an important cause of deaths in infancy.

Organ and tissue donation and collection

Organ donation (e.g. heart, lungs, liver, kidneys) requires intact cardiorespiratory function but brain death. Because of the preconditions required by Transplant Acts before brain death can be declared, organ donation discussions are commonly deferred until admission to the intensive care unit.³⁵

Tissue donation (e.g. corneas, heart valves) can occur from cadavers, and hence theoretically this issue could arise for children who die in the ED. However, deaths of children in the ED are usually coroner’s cases. For parents faced with the extreme distress of the sudden death of a child and the need for coroner’s-case status, it may be potentially too distressing to parents for ED staff to raise the further issue of tissue donation in this setting. This can come a little later at the Forensic Pathology Institute level, when parents have had a little time to regain some degree of composure and hence may be better able to give informed consent. On the rare occasion when the issue of tissue donation is spontaneously brought up by parents in the ED setting, contact with the transplant coordinator can be initiated if there are no potential medical contraindications to tissue donation. Consent by the coroner must be obtained prior to tissue removal.

When children die suddenly and unexpectedly there may be merit in considering collecting perimortem samples in order to obtain as much information as possible. This might include urine and blood for metabolic profiling, genetics screening and other possible investigations such as liver of other tissues samples that may contribute to the understanding of cause of death. This will depend on location and is more likely to be valuable in a major centre where appropriate pathology facilities are immediately available.

Debriefing and support for ED staff

Much of what is written about the family grief reactions applies equally to the ED staff and due consideration of staff reactions is very important. A healthy approach is to factor the reality of day to day exposure of grief and loss into the culture of a busy ED. There is a paucity of literature on the reactions of staff and grief management among ED staff members.

Identifying abnormal psychological symptomatology in ED staff (flashbacks, sleep disturbance, bad dreams, absenteeism, detachment, intensified emotions, etc.) and making ongoing psychological counselling available to affected staff is clearly important. Such symptomatology may occur as a result of either a single exposure or cumulative exposures to traumatic situations. It is important for senior ED staff to promote the concept of self-care, to guarantee confidentiality to staff experiencing problems, and to ensure staff are made aware of counselling options available to them should they experience problems.³⁶

Performing an operational debriefing of the resuscitative process with a view to clarifying events for attending staff and identifying areas for potential improvement is essential.

The same cannot be said for psychological debriefing sessions. It has become a popular and widespread practice to conduct single session psychological counselling for personnel attending traumatic critical incidents. ED staff in attendance at an unsuccessful resuscitation fit into this situation. A recent Cochrane Review concluded that single session psychological debriefings have not only failed to reduce the incidence of post-traumatic stress disorder but actually increased the risk of developing it.³⁷ In addition, there was no evidence of reduction in general psychological disturbance, depression or anxiety. This is an area where more research is required.

Conclusion

The death of a child has the most profound effect on parents, family and friends. It can also have a profound effect on staff involved in the resuscitation process. It requires the sensitivity and strength of clinical staff to help relatives through this difficult time and to assist in the initiation of a healthy grieving process. A thoughtful and sensitive approach is likely to have profound and positive long-term implications for all those impacted upon by the death of a child.

Acknowledgements

The authors gratefully acknowledge the assistance of the Indigenous Liaison Service, Herston Hospitals Complex, Brisbane.

Controversies

There remains some controversy about actively encouraging parents to be in the resuscitation room.

There is little evidence to support the widespread practice of mandatory single-session psychological counselling of distressed staff who attended the child.

Raising the issue of tissue donation with parents in the ED setting is difficult.