Supporting the family can include the following:
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:
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.
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:
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:
Date of birth / ID number
For attention: Paramedic / Police colleagues
(Patient name) is well known to the (Clinical services) at (name of hospital). They have a severe, life-threatening condition, and may die at home.
If this happens, their death is to be regarded as due to natural causes. A postmortem examination is not indicated.
Once (name) has been confirmed as deceased, please contact (Person name) at (facility name and phone number) to complete a death notification. If the death occurs after hours, please contact (person name / on call doctor) at (facility name and phone number).
The family have nominated (Undertaker’s name and contact details) to manage the burial of their child.
Thank you for your kindness and empathy in this difficult time.
(Name, organisation, and contact details)