In the UK, childhood death occurs infrequently (Whittle & Cutts 2002) but the impact on the family is profound (Davies & Connaughty 2002). The nurse’s professional experience of childhood death may be limited; however, when it does occur, compassionate, professional and effective management of the situation may positively influence the family’s ability to grieve (Hindmarch 2000) and assist staff in obtaining a balance between professional and personal loss (Read 2002). Informing families that some choices are available to them which may allow them to feel in control of at least part of the process may offer some comfort at a time when the outcome is out of their hands.

FAMILY CARE WHEN DEATH IS EXPECTED AND PLANNING CAN TAKE PLACE

The child, young person and family should all be involved in the discussions about where the last days of life are spent (Freyer 2004). There should be several options from which they may choose the one most suitable to their individual needs including hospital, home or hospice. In some cases, despite the requirement for intensive care treatments to temporarily sustain life, the choice of dying at home has been facilitated (Longden & Mayer 2007). While a hospital ward may be too noisy, busy and lacking in privacy, some parents may find comfort in being in the hospital environment. This may be due to their fears about how their child will die: Will he be in pain? Will he bleed or choke to death? Careful discussion about their reasons for wanting to be in hospital may uncover these fears. Explanation and reassurance will help to allay them. Parents may then decide that hospital is not their first choice. Some areas are fortunate to have children’s hospices where it may be possible for the child and family to spend the last hours. This can be arranged days or weeks in advance where circumstances allow, but many hospices can be of assistance at very short notice. Some hospices will care for children who have already died (e.g. on a hospital ward). They take the child’s body into the hospice so that the family may spend some time with the child in a setting, which is not part of a mortuary or Chapel of Rest but more like home.

In a non-emergency situation, choice of who should be present when the child or young person is dying should also be considered. Some families like to have the dying child surrounded by the whole family – parents, siblings and grandparents, uncles and aunts. Other parents may wish to be on their own with their child. The developmental age of the child or young person influences their level of understanding of their own death and may have reached the extent of the realisation of the impact upon others (Freyer 2004). Therefore, all attempts to integrate the child or young person’s wishes with the parents’ wishes about who should be present should be negotiated. The nurse may offer to tactfully refuse visitors if parents or dying children wish to have privacy. It can be difficult for parents to be assertive about numbers and timing of visits and visitors when their child is dying.

OTHER FAMILY MEMBERS

Siblings, grandparents and other relatives will also need a lot of support at the time of a child’s death. This can be a particular issue for nurses if the parents are concentrating entirely on the dying child and dealing with their own grief. Sibling short- and long-term grief is influenced by individual, situational and environmental factors (Davies & Orloff 2004). These factors include the age of the grieving sibling, the circumstances of their brother or sister’s death and also the closeness of the relationship between the child and their sibling. Nurses who recognise the individuality of each child or young person’s death and adopt a flexible approach to care delivery at this time will help to provide emotional support not only leading up to and at the time of death, but also in the future. Other agencies may help provide support for family members, e.g. play therapists for siblings, religious figures to help grandparents.

FAMILY CARE WHEN A DYING CHILD HAS TO UNDERGO RESUSCITATION

The presence of the family in an emergency situation such as resuscitation has stimulated much debate. The right of parents to be present at a time when there is risk to their child’s life seems unquestionable (Clift 2006). However, staff may be concerned about parents’ presence hindering their attempts either through feeling intimidated as they may be being observed or by having to support distressed parents. Staff have expressed fears that witnessing resuscitation of their child may cause long-lasting psychological damage to parents and hinder their grieving process. Conversely, Hogg (2003) discovered that the imagined horror of the resuscitation attempt results in more damage to relatives who had not been present during resuscitation, than to those who had been. This supports earlier findings by Hallgrimsdottir (2000) who reported that parents felt that it brought a sense of reality to their loss and helped them in their grieving process. Parents also report that it was of some comfort to them that as they knew that everything possible had been done (Meyers et al 2000, Vanderbeek 2000). However, in order to effectively support families, a designated appropriate person should be identified to be with the parents (Meyers et al 2000). Parents must: (1) be given the choice of whether or not to stay; (2) not be left on their own to witness the events; (3) be supported by someone who can explain what is happening to their child.

FAMILY CARE WHEN PARENTS ARE NOT PRESENT WHEN THEIR CHILD DIES

If parents have not been present at the death of their child, they must be informed as soon as possible after death. Someone who has access to accurate information about the circumstances of the child’s death and the experience and confidence to inform the relatives should perform this task. It is important to be gentle but direct. Using simple language such as ‘she has died’, rather than euphemisms such as ‘she has passed away’, will avoid misunderstandings and help parents to acknowledge their child’s death – the first step towards acceptance. Do not be afraid of silence once the news of the death has been given. In a study of bereaved parents, Soutter (1994) was told by them that ‘words were not necessary because the pain was too great and could not easily be assuaged’. However, the same study also highlighted the comfort that was afforded to parents by the physical contact of an embrace. In some cultures, relatives are expected to show their grief by wailing and keening. This can be very noisy and possibly cause distress to staff and any other patients or relatives who may be nearby (in a hospital setting). Explanation that this is their way of expressing their grief should be given.

RETENTION OF ORGANS AND POSTMORTEM (PM)

Bereavement care includes determining the need for postmortem in discussion with the medical team and obtaining informed consent from the child’s next of kin for the procedure. Obviously, this is a time of great stress and sadness for everyone and detailed discussions should be handled with sensitivity. Following the Royal Liverpool Children’s Inquiry (2001) into the retention of organs, changes in the whole concept of communicating with families and gaining consent have taken place and have shaped the current process (DoH 2003).

• The possibility of a coroner’s PM must only be mentioned if the death is reportable to the coroner.

• If the coroner declines a PM, but the clinician wishes a hospital PM to be undertaken, the next of kin must be made aware that this is a consented procedure to which they have a right to decline. No compulsion exists for this to be carried out.

• The full procedure must be explained to the next of kin including the opening of the body, removal and weighing of organs and if any organs or tissue will be retained and what will subsequently happen to these (Human Tissue (Scotland) Act 2006, Human Tissue Act 2004).

Box 7.1 details some of the major categories relating to the death of a child which indicate that the case must be referred to the coroner, by law (Regulation 51 of the Registration of Births, Deaths, and Marriages Regulations 1968). In these circumstances, the coroner will sometimes order a postmortem. Written guidance detailing required reported deaths is available on the government website, at: www.dh.gov.uk

Sometimes local practice requires a postmortem to be performed in additional circumstances to those required by law, for example, if the death was within 24 h of admission to hospital or if the deceased was detained under the Mental Health Act. It is important to establish what local policy and practice require. Ethically, medical staff should always obtain consent for a postmortem from parents, but it is not legally required for a coroner’s postmortem (Henderson 2006).

Seeking consent for a postmortem is a very emotive subject for families and nurses may play an integral role in ensuring that the approach is sensitive and positive (Henderson 2006). Careful explanation of the need for the examination and the actual procedure should be given. It must be stressed that the body will be treated with the utmost respect and the same care as for a living patient. Parents may be concerned that the body will be disfigured by the procedure and should be reassured that suture lines on the torso and above the hair line will be the only evidence of the postmortem and will not be unduly disfiguring. Parents should be given the opportunity to view the body afterwards. It is generally accepted that having this opportunity helps families to grieve (Haas 2003). However, evidence exists which suggests that this may not be the case in the neonatal death experience (Skene 1998). Therefore, caution should be shown and each case treated as individual (Davies & Connaughty 2002).

The inability to stop a coroner’s postmortem may cause extreme distress to some families, particularly those whose religion expressly forbids such a procedure (Box 7.2). These parents may need a lot of support, and advice should be sought from their religious or spiritual advisors concerning special procedures for handling the body during postmortem and returning organs to the body. Jewish and Islamic faiths require that any organs removed from the body during a legally required postmortem examination be returned to it for burial (Green & Green 2006). When a postmortem is required, any cannulae, drains or tubing should not be removed from the body without discussion with medical staff (Green & Green 2006).

ORGAN DONATION

In some cases, the question of organ donation may arise. Suitability for organ donation will depend on the child having no evidence of major untreated systemic infection, malignancy (excepting primary brain tumour), chronic severe hypertension or positivity to Australia antigen (hepatitis B) or human immunodeficiency virus antibodies (Browne & Waddington 1993). A child who is maintained on mechanical ventilation must have met the brain stem death criteria before organ donation can occur.

Browne and Waddington (1993) suggest approaching parents when the first set of tests has been completed and the criteria met. It may be possible to broach the subject earlier than this if someone who is experienced in discussing the subject with parents, e.g. a transplant coordinator, handles it sensitively. Ensure that when parents are approached regarding organ donation, someone with whom they have been able to build a relationship, for example a member of the medical or nursing staff, is present. Organ donation must always be broached sensitively and by someone who has a positive attitude towards transplantation but is not seen as biased.

If parents agree to organ donation, the transplant coordinator will help support them and explain forthcoming procedures. Parents should be aware that they can see their child after donation. They should be warned that their child will be white, cold and, depending on which organs have been retrieved, may have large scars.

Religious objection to organ transplantation is not the inevitable consequence of the laws and beliefs of the different faiths (Ethnicity Online 2004). However, the following examples illustrate how some find it a very difficult issue:

• Jehovah’s Witnesses because other transfused blood will circulate through the organ

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