Supporting the family can include the following:

• If in a hospital or hospice, there should be no restrictions to visiting for close family and friends. Check with the family who else should be allowed to visit.
• Reassure the family that they are doing a good job of caring for their loved one.
• Explain that their child’s breathing may change, become laboured or sound like they are gasping for air but that this is part of the normal dying process.
• Give information in advance about the procedures to be followed when the child dies to help relieve some of their anxiety.
• Family members need to be allowed to spend time alone with the patient during the dying phase, encouraged to say goodbye and even be encouraged to give the child permission to ‘let go’ and tell them that ‘it’s okay for them to die’.
• Explain what you are doing throughout the time to help allay fears.

https://www.cclg.org.uk/write/MediaUploads/Publications/PDFs/Managing_symptoms_at_home_2016_Web.pdf

It can be difficult to always know when death has occurred, especially if the child has had prolonged Cheyne-Stokes (breathing where they stop and start ) for a few hours or days. Therefore, it is important to explain that the following will mean death has occurred:

• There is no breath or heartbeat
• Eyes do not move, even if they are open
• Pupils may be large (dilated)
• Mouth may fall open as the jaw relaxes
• There may be a release of bowel or bladder contents

If in hospital and the family want to spend time with their child’s body for a period after the child has died it is important to inform them of the changes that will happen to the body once death has occurred and reassure them that these changes are normal.

The family is likely to need a lot of reassurance and support and you should be prepared to deal with the family’s grief which may manifest as guilt, anger, hysteria, sadness or even physical symptoms e.g. fainting when the child dies.

It is important to allow the family some time with their child’s body after the death. The family should be allowed to follow cultural practices regarding preparation of the body before it is taken away so that they have the opportunity to express their feelings and say goodbye. Ask the family if they want to take a lock of hair or hand and foot prints as part of memory making. Assist the family with the completing of the required documents, such as a notification of death form, as well as contacting the funeral parlour that will be collecting the body.

• Expedite the certification of death and completion of forms so that family members are not forced to wait in a public space while grieving.
• Debrief with family and provide information or explanations where requested. The family are trying to make sense of the illness and the death and clear explanations help in this task.
• Identify and support any cultural, religious, spiritual needs/requests around the burial of the body.
• The key element of bereavement support is compassionate listening, apart from providing clinical facts when asked. This is something the health care worker can do. Too often the bereaved are avoided because we do not know what to say. Offering condolences and listening is all that is required; and then, referral for bereavement care to the appropriate counsellors on the interdisciplinary team or with hospice.

See follow the child pg 143

If the family has chosen to care for their child at home during the terminal phase, or there is a chance that their child may die at home, it is valuable to prepare them for the logistical processes that may be required.

If a child dies at home, the following steps need to be followed:

• Contact the police or paramedics
  • They will examine the child to confirm that they have died
  • A letter stating natural causes (detailed below) should be given to them by the family, if one has been provided
• Contact the child’s healthcare provider
  • They will complete a death notification form (Form BI-1663)
  • A death notification book is kept at each hospital
• Contact the undertakers
  • They will collect the child’s body and keep it safe until burial / cremation
  • They will collect the death notification form from the hospital and complete the burial order form (Form BI-14)
• Register the child’s death at the Home Affairs office
  • This can be done once the Form BI-1663 is completed
  • The undertakers will often assist with this step
  • An abridged death certificate will be issued free of charge on the day of the death registration
  • An unabridged death certificate can be obtained by completing a Form BI-132 and paying the required fee.
• If the family cannot afford to bury their child using an undertaker’s service, a state-funded burial or cremation (also known as a “pauper’s burial”) can be arranged.
  • The healthcare worker who completes the death notification is to also complete the burial order form (Form BI-14), stating that the child is for state-funded burial or cremation
  • The police or paramedics to take the child’s body to the local state mortuary for safekeeping until burial

A letter addressed to the police or paramedics stating that the child is expected to die of natural causes can be extremely helpful, and avert unnecessary legal complications and anguish for the family. A template is provided below: