When a child dies

This guideline is intended to supplement the resources found in the 'When a Child Dies' (WACD) purple box located in every ward, which gives detailed information on the care of a child after death and, additionally, the ongoing care and attention that the child's family will require (Rationale 1).

Content 

Introduction 
When a child dies - guidance for nursing staff flow chart
When a child dies - guidance for doctors flow chart

Care before death  
The 'When a Child Dies Box'
Religious observances
Emergency baptism
Organ donation 
Identification of Potential Donor: Referral and Contraindications
Tissue donation

Care after death   
Communication
Responsibilities - Medical Staff
Responsibilities - Nursing staff

Legal Issues  
Confirming death and death certification
Postmortem

Personal care after death (last offices)  
Practical actions: keepsakes
Practical actions: special considerations for infection control
On-going care of the body (Cooling guidance)

Moving the Child
Moving the child: to the mortuary 
Moving the child: home, hospice or funeral directors

Additional Information  
Child Death Overview Processes
Staff support
Bereavement support 

Definition of Terms

Introduction

This guideline is intended to supplement the resources found in the 'When a Child Dies' (WACD) purple box located in every ward, which gives detailed information on the care of a child after death and, additionally, the ongoing care and attention that the child's family will require (Rationale 1).

This guideline is concerned with events following a child's death and does not outline any measures that should be taken prior to death in order to prevent the event. 

Staff should refer to trust Resuscitation policy for this information. 

Staff must be aware of the response to a sudden unexpected death: that is one that was not anticipated within the preceding 24 hours.  ALL such deaths MUST be notified to the Coroner using the contact details and guidance is on the intranet. In the (WACD) box is a flowchart for this process. 

Final personal care is the name given to the washing and dressing of the child after death. The family and/or the nursing staff should carry this out (Rationale 2). The nurse(s) should know the child, be suitably experienced and feel able to undertake the procedure (Rationale 3).

When a child dies - guidance for nursing staff flow chart

When a child dies - guidance for nursing staff

When a child dies - guidance for doctors' flow chart

When a child dies - guidance for doctors

Care before death

The 'When a Child Dies Box'

All wards and relevant departments have been supplied with a purple 'When a Child Dies' box file, which contains all the necessary paperwork and materials that are referred to in this procedural guideline. A content list is included in the appendices of this document (Rationale 12). See Appendix 1.

It is the responsibility of the ward manager (or a nominated deputy) to maintain this resource and to ensure that all the items on the contents list are included in the When a Child Dies box (Rationale 13).

Two leaflets are available at GOSH; these can be found in WACD box or from Bereavement service office L2 Barclay House and intranet:

  1. When a child dies parents leaflet - (These are also available in Urdu/Arabic/Greek/ and Turkish)
  2. Post Mortems parents information.

Spiritual & Religious Support

Before death it is helpful if the ward staff familiarise themselves with any special requests that the family or child, if appropriate, may wish to be observed. 

The 'When a Child Dies Information for Staff' booklet provides an overview of the most common faith practices (Rationale 74). The information outlines specific requirements for the main faiths encountered within the hospital. All families should be asked about their particular wishes, and individual practices and requirements (Rationale 75).

A chaplain is available 24 hours a day (via switchboard) for advice and holds all contact details for other world faith representatives (Rationales 76 and 77).

Our chaplaincy team is here to offer spiritual and religious support to all patients, families and staff as appropriate.  This service is available to everyone, whether or not they have a specific religious affiliation. A multi-faith team is available for this support.  Whilst not every faith group is represented on our team, we do have contacts with many faith groups who we can contact if needed.  Sometimes those contacts are able to come in to support a family, though this is by negotiation and cannot be guaranteed.

The death of a child can inevitably raise the bigger questions about life, death, meaning and hope. Our multi-faith team can provide a safe and supportive space to express and address some of these questions where appropriate. The team is also available to families for support after the child has died. They recognize that each family’s needs will be different and work with families at their pace. This support can be as simple as being present without any agenda, or it may involve a specific religious ritual or prayers.  

After a child has died, the family will receive a letter inviting them to have their child’s name entered in our Book of Remembrance. Many families wish to return to the chapel to see their child’s name and chaplaincy support is available for such visits. Families are also invited to our Annual Memorial Service. 

The Chaplaincy and Spiritual Care Team are available to any staff member that is affected by the death of a child.

Emergency baptism

If the death of a child is believed to be imminent, parents with a Christian faith may request baptism or blessing or staff may wish to suggest this be considered (Rationale 4). The appropriate duty chaplain or priest should be contacted, via the hospital switchboard (ext. 5000), with this request without delay (Rationale 5).

If it is not possible for one of the hospital chaplains or a priest to attend the ward in time to baptise the child (Rationale 6), it is possible for a member of staff, preferably a Christian, to baptise the child using the emergency baptism procedure; see WACD box (Rationale 7). However, the child should only be baptised in this way if he/she is not likely to live long enough for a chaplain or priest to attend the ward (Rationale 8).

When a child is baptised by a member of staff on the ward the chaplain will help them in completing the hospital baptism register and a certificate, after the event (Rationale 9). The chaplain will also offer pastoral care.

It is not usually appropriate for a child to be baptised after death (Rationale 10). However, baptism during a resuscitation attempt is considered appropriate and is likely to be of pastoral benefit to the family.

The chaplains may choose to exercise some flexibility in offering baptism after death and will certainly offer to pray with the family and bless the child's body (Rationale 11).

The Chaplaincy and Spiritual Care Service will offer the family suitable rituals appropriate to their faith and/or philosophy in a sensitive consultation with them at the time.

Organ donation

The healthcare professional that raises the subject of organ donation with the family should ideally be the Specialist Nurse – Organ Donation, or have an existing relationship with the family, have experience in communicating with parents at the time of their child's death, have knowledge of organ and tissue donation and believe that donation may be a positive option for some families. On-going support and information should be provided via the Specialist Nurse- Organ Donation (SNOD) via London Donation Services Team available 24 hours on 07659 100 103 (Rationale 61).

Should the following criteria be met the medical or nursing team must promptly contact the specialist donation services team to discuss the potential for donation:

  • There is a plan to withdraw life sustaining treatment and death is thought to be imminent.
  • Brain Stem Death is suspected. 

Donation of solid organs can occur under these circumstances. Tissue donation can potentially occur following any death. 

The SNOD (contacted via London Donation Services Team available 24 hours on  07659 100 103) (Rationale 62) can advise on the suitability for donation. It may be appropriate for the assessment to be made following arrival of the Specialist Nurse at the hospital. Sufficient time should be allowed for a full assessment to be made prior to offering the family organ donation.

An approach to a family regarding donation opportunity should be carried out following an agreed plan and in conjunction with specialists in this area (Rationale 63), ensuring that the families are given the full information they require to make an informed choice and that they are fully supported in their decision.

Should the family wish to consider donation, where appropriate, the specialist team, in conjunction with the medical team, will seek appropriate consent from the Coroner. Coroner’s consent may be sought by the Specialist Nurse prior to offering donation to families, in agreement with the Consultant.

Donation of tissues, e.g. cornea, heart valves and skin should also be considered following the death of any patient. Advice on this can be gained from the specialist teams and the ICU’s family Liaison Team. 

  • London Donation Services Team 07659 100 103
  • National Referral Centre 0800 432 0559 (rationale 64

Children who die at home can still potentially donate tissues. Advice should be sought from the palliative care team or from either of the numbers listed above.

Identification of Potential Donor: Referral and Contraindications

All potential donors should be referred to the SNOD as early as possible for consideration). Contact via switchboard or call 07659 100103 (Rationale 65).

Staff should not make assumptions about a family opposing donation on the basis of cultural or religious background. Families should be treated on an individual basis (Rationale 66).

The Specialist nurse- organ donation is always available to assist staff in approaching parents about organ donation (Rationale 67).

The request for donation should be made in a quiet, private room and must be sought sensitively and should be made at an appropriate time for the family (Rationale 68). 

All communication with parents regarding organ/tissue donation should be documented clearly in the child's healthcare records (Rationale 69).

Criteria for brain stem death must be met in accordance with ‘A Code of Practice for the Diagnosis and Confirmation of Death’ (The Academy of Medical Royal Colleges, 2010). This revised Code builds upon the Code published in 1998 and updates a number of important aspects. It provides clear, scientifically rigorous criteria for confirming death, both in clinical settings where confirmation of death by brain-stem testing is appropriate, and where confirmation of death following cardiac arrest is required. If the Child is a neonate aged between 37 weeks corrected gestation and two months, criteria for brain stem death testing must be met in accordance with ‘The diagnosis of death by neurological criteria in infants less than two months old’ (Royal College of Paediatrics and Child Health (RCPCH)  (2015). Below this age, a child may not be brain stem tested (Rationale 69). 

Further Guidance at: 

In situations where the cause of death was not known, sudden or not due to natural causes, the clinician caring for the child or the Specialist Nurse – Organ Donation will contact the Coroner for consideration of such potential donors (Rationale 70).

The specialist team will advise on the legal requirements for the processes.

The role of the Specialist Nurse – Organ donation (SNOD)

Following agreement from the family to donate, the SNOD will manage each case of organ donation (Rationale 71).

Theatre staff should be informed at the earliest convenience about potential organ retrieval (Rationale 72).

Tissue donation

Tissue donation, e.g., eyes and heart valves, should also be considered.  Clinicians can contact the Specialist Nurse-Organ Donation for advice or referral, or contact the National Referral Centre for Tissue Donation on the above number (Rationale 73).

Care after death

Communication

Preparation for death may be facilitated by referral to Palliative Care team, Chaplaincy the Bereavement Service or mortuary for advice (Rationales 14 and 15).

If the child's parents or carers are not present they must be informed immediately of the death (Rationale 16).

The following need to be advised that the child has died as soon as possible: (Rationales 16, 17 and 18).

  • Appropriate clinical staff 
  • Clinical Site Practitioner (Bleep 0313) 
  • Bereavement Service (ext. 8551- 24hr voicemail) 
  • The child’s GP 
  • Referring hospital Consultant (if applicable) 
  • Mortuary staff (Ext.7906).

Notify when practical the following;  

  • Embassy/sponsoring body where appropriate 
  • Interpreters if required or previously involved 
  • Religious representative if requested by the family 
  • Clinical Nurse Specialists where appropriate 
  • Health visitor or school nurse 
  • Community nurse where appropriate 
  • Midwife if the child was a newborn or infant under 28 days old 
  • Social Care Team (if applicable) 
  • Hospital accommodation
  • PALS/Complaints if involved

Ensure the death of the child is recorded on PiMS ensuring the correct spelling of name with parents (Rationale 19).

If the child dies on the ward, ward administrator (or nurse, if out of hours) should enter the death in the relevant section of the discharge field (Rationale 20). If the child dies at home, the death should be entered in the death field on PiMS by the person who first finds out about the death, e.g., medical secretary, ward administrator or nurse.

If a child dies in an operating theatre, the relevant ward must be informed and arrangements made for the transfer of the child to either the ward or mortuary. The Coroner will need to be informed the process/guidance for this is held in the WACD purple box and hospital intranet. The family should be informed and supported immediately (Rationale 21).

The surgeon / doctor and/or the anaesthetist who were present at the procedure should communicate the circumstances of the child's death to the family. It is preferable to have a member of staff who the family know, present at the breaking of the news (Rationale 22).

Wards and departments may have pagers available to supply to the parent/carer(s) while their child is in the operating theatre so that staff can contact them easily in an emergency. Ward staff should know parents/carers whereabouts whilst a child is in theatre.

Responsibilities

Medical Staff

  • Initiate response to sudden unexpected death if this was not noted as having been anticipated within the last 24 hours. In hours advice can be sought from the Bereavement Service team staff ext. 8551, out of hours from the Clinical Site Practitioner (Rationale 78). 
  • Confirm the death and record in the child's health care record. 
  • Notify the Infection Prevention and Control Team (Rationale 23a) and Public Health England of any health care acquired infection (HCAI) or notifiable disease, as appropriate.
  • Complete DATIX incident report if HCAI thought to be/have contributed to the cause of death.
  • Seek advice from Coroner if necessary using the form on the intranet and email. Guidelines and form can be found on the GOSH intranet. NOTE: coroner guidance changed in July 2013.
  • Discuss post mortem, post death biopsies and organ or tissue retention with the family. Give parent’s a copy of the Post mortem examination information leaflet in WACD box. 
  • Request the post mortem, if appropriate, and discuss with pathologist/mortuary team. Obtain consent form from intranet. (Rationales 24 and 25). 
  • Explain need for Coroners post mortem (if necessary) (Rationale 26). 
  • Discuss organ donation (See section on organ donation in this guideline). 
  • Complete and sign death certificate. 
  • Enter details from the Medical Certificate of Cause of Death (MCCD) onto the self-adhesive checklist on the front of the medical notes. 
  • Complete a Medical Certificate Cremation form 4 in case a cremation is requested and ensure you are available to be contacted within 2 working days if not at work  then own number so you may be contacted by the authorities. The medical notes and form must go to the mortuary.
  • Notify GP and referring hospital of death as soon as possible, but as a minimum within 24 hours (Rationale 27). 
  • Complete a death summary within 20 working days of the child’s death and copy to Bereavement Services Manager.  
  • Arrange for a discussion of the consented post mortem results with the parents on the earliest possible date (Rationale 28). 
  • Ensure the Lead consultant is aware so that a letter of condolence is written and sent along with a bereavement follow up appointment giving opportunity for the family to discuss any issues for 6 – 8 weeks after the child’s death.

A copy of the death summary and a written summary of the bereavement follow up appointment meeting to be documented in the child's health care record (Rationale 29). 

Nursing staff

  • Ensure Bereavement service is informed of child’s name, hospital number, ward and whether it was an expected or unexpected death. This should be as soon as possible after the child’s death, but as a minimum within 24 hours. This is in order to follow the Management of Medical Records protocol (see WACD Box) and to trigger Child Death Overview panel notification. 
  • Ask parents if they would like keepsakes, e.g. photograph, foot or handprints, lock of hair, clothing that has had close contact with the child. Ensure you have their consent before undertaking any of these. Memory boxes for under ones and  age 5-16 year olds are available from bereavement services (Rationale 30)
  • Perform final personal care and discuss available options for transportation  to either home, funeral home, mosque, church or hospice, with the family, e.g., transfer of the child to the mortuary (see WACD Box) (Rationale 31). 
  • Arrange with mortuary team for parents to view their child as requested and if appropriate (Rationale 31). Parents can be supported to do this by ward staff or Chaplaincy, Social worker, Bereavement team pending on their availability. Families need to be accompanied throughout their entire visit.
  • Support parents to initiate funeral arrangements.  If advice is required please contact the Bereavement Service Manager, Chaplains, Mortuary or family support worker care of the social work department (Rationale 32).
  • Ensure suitable travel arrangements are in place for the family to go home (see WACD Box) (Rationale 33). 
  • Provide parents with the booklet, 'When a Child Dies' and Child Death Helpline details all in parent’s information pack from WACD Box (Rationale 34). 
  • Notify health visitor and relevant social worker of death. 
  • Ensure all other staff members are informed of the death as appropriate. 
  • Decide how to inform other families on the ward of the child's death (Rationale 35). 

Legal Issues

Legal issues: confirming death and death certification

The child must be examined after death by a doctor (Rationale 36).

Any unexpected or unexplained death must be referred for the Coroner who will discuss with the clinician involved. To refer to the coroner please use the form on the intranet and email. Guidelines and form can be found on the GOSH intranet. NOTE: coroner guidance changed in July 2013.

The child's death must be entered into the child's medical and nursing notes and PiMS (Rationale 37).

The family should be given their child's death certificate by the doctor and explain what is written before they go to register their child's death (Rationales 38 and 39). This will not be possible if the death is to be investigated by the coroner (Rationale 40).

The details on the Death Certificate should be checked for legibility; abbreviations should not be used. Signature should be accompanied by printed name and by the Doctor's GMC registration number.

The child's details, particularly their names, should be clarified with the family. Neonates may have a change of surname so it is vital to check first with family (Rationale 41).

An additional 'Medical Certificate Cremation 4' is required for cremation (see WACD Box) (Rationale 23).

On the reverse of the Medical Certificate Cause of Death is a box B that may be ticked indicating that further information may be available later. The registrar may then contact the doctor for the underlying cause of death. 

Any health care acquired infection must be noted on the death certificate.

Registration of death must take place within five days (Rationale 23). This is normally done by the child's parents. However, after discussion with the registrar (of deaths), it is sometimes possible for a relative, friend or member of hospital staff to do it on the parents behalf as long as they are able to identify the child's body (Rationale 42).

The following is required to register a death: (Rationale 23)

  • A certificate: ensuring the correct certificate is used, either under or over 28 days old (two separate MCCD books) stating: 
    • The cause of death 
    • Date and place of death 
    • The child's full name, home address, place and date of birth. Names should be confirmed with parents as these do sometimes change, particularly for neonates. 
    • The parents full names, home addresses and occupations 

Deaths at GOSH should be recorded at:
Camden Register Office, Camden Town Hall, Judd Street, London, WC1H 9JE
Telephone: 020 7974 1900
Please ring or go online www.camden.gov.uk/registrars to make an appointment.

Opening times, by appointment only.

  • Mon-Fri 9am-4.30pm (except 1st Thu of month 9am-1pm) 
  • Sat 9am-12.30pm. 

Sun and Bank Holiday on-call service available 9am -12noon for same-day burial issuing of green certificates. (This option is for parents who request same day burial for religious reasons).

It is possible to register the child's death in their home area but paper work may take more than a week to process and the family should be informed of this (Rationale 43).

The registrar will provide: (Rationales 44 and 45)

  • A certificate for burial or cremation for the undertakers, required for release of the child's body (green form)
  • Form BD8 (revised) notification of death (Rationale 46
  • Form for social security purposes can be found on the website

The registration and issue of certificates is free. Any extra certified copies of the Death Certificate are available for a small fee.

The mortuary require a ‘transfer of care form’ given to the parents and completed to be able to release the body. This is given once completed to the funeral director by the family.

If a post mortem is required by the coroner, normally the coroner’s officer will advise about collecting the death certificate and how they may then proceed (Rationale 47).

If a newborn baby dies and their birth has not been registered, a declaration of birth can be made at the same time as registration of death. The birth certificate will be sent at a later date (Rationale 23). Parents can still register the birth locally within the normal six weeks if they wish. If the parents are not married, the mother must be present. If they wish for the baby to be registered with the father's surname both parents must be present (Rationale 48).

It is the responsibility of the parents to contact their benefits office to cancel any benefits that they received for their child. They may need to be reminded and supported in this task (Rationale 23).

Legal issues: post mortem

Post mortems may be: (Rationales 49 and 50)

  • ordered by the Coroner 
  • requested by medical staff 
  • requested by the family 

There four types of post mortems examinations:

  1. A full post mortem involves a detailed examination of all the organs and tissues.
  2. A limited post mortem is to look at specific areas of the body (Rationale 51)
  3. A minimally or less Invasive will include images and examination of the body through a small incision. (This should be discussed with the mortuary team regarding timescales)
  4. A post mortem biopsy means a small sample is taken from specific areas.

Consent is not a legal requirement for a coroner's post mortem to take place. Best practice requires discussion and information to be given to the family via the coroners’ officer. Consent is needed at a later stage regarding any samples taken as part of the post mortem this is the responsibility of the coroner’s officer.

If a post mortem is requested by the doctors or the child's family, written consent MUST be given. This should be sent to the mortuary with the Childs notes as soon possible to enable the team to plan and carry out the examination (Rationale 52). VERBAL CONSENT IS UNACCEPTABLE.

If a hospital consented post mortem is requested by either the medical team or parents, the appropriate medical staff should explain the procedure and a trained post mortem consent taker is responsible for obtaining consent (Rationale 53). Consent forms are available from the intranet under other clinical forms. Completed forms should be sent to the mortuary with the child’s notes and a copy kept with the child's health care record (Rationale 54).

If a post mortem is to be performed, an appointment must be offered by the clinician to see the family with the results (Rationales 55 and 52).

When obtaining consent it is important to: (Rationales 52)

  • have a thorough discussion to ensure the parents/those with parental responsibility make an informed choice
  • consent taker must be suitably trained and updated
  • be accurate about what needs to be done 
  • ensure options are discussed for  any tissue samples or organs to be retained, disposed of or returned  either as whole organs, frozen samples or tissue blocks and slides
  • ensure the parents/those with parental responsibility wishes are recorded accurately
  • advise when and where the post mortem is likely to occur.
  • The mortuary APTs can be available to support in answering  questions or explain in more detail options for the parents to consider

All the same issues of consent apply if a sample of body tissue is to be taken from the body of a dead child whilst they are still on PICU/NICU/CICU (Rationale 56).

Consent may occasionally be obtained in advance of death (Rationale 57).

Once consent has been given, the mortuary team (ext. 7906) should be informed and arrangements made for them to receive the case notes and consent form (Rationales 58 and 59).

If a post mortem is to be performed, the child should be taken to the Mortuary and placed in the refrigerator as soon as possible (see WACD Box) (Rationale 60).

Ensure that the GOSH leaflet, 'Post Mortem Examination', is supplied to the family from WACD Box (Rationale 34).

If a consented post mortem has been discussed and the parents have agreed it is still possible to go ahead with this even if the child dies at home or in a hospice. This should be discussed with the mortuary team prior to the child leaving the hospital.

Personal care after death (last offices)  

Unless the child is referred to the coroner, it is considerate to seek the family's wishes in performing 'final personal care'. It is important to ensure that the religious rituals they want to carry out are included. You can seek advice from parents, chaplaincy. It is appropriate to involve them fully in and support them in carrying out as much or as little of the practical aspects as they wish (Rationale 79).

‘The personal care after death needs to be carried out within two to four hours of the child dying, to preserve their appearance, condition and dignity. It is important to note that the core temperature will take time to lower and therefore refrigeration within four to six hours of death is optimum’ (Hospice UK, 2015)

Use the child's own toiletries and clothes if possible for washing and dressing the child (Rationale 79).

Standard or isolation precautions must be taken in the same way as if the child were still alive (Rationale 80).

Tidy the child's bed space/room, switch off all monitoring equipment and wherever possible remove it from the bed area (Rationale 81).

Gently wipe or aspirate any secretions. If secretions are copious, the orifices of the child must be packed. Their mouth should be gently closed (Rationale 82).

Unless a coroners post mortem is to be performed, all drains, tubes, cannulae, etc., may be removed and disposed of in clinical waste bags for incineration (Rationale 83). If lines, tubes and drains are to be left in situ, they should be disconnected as close to the skin as possible and securely spigotted (Rationale 84). If left in to prevent leaking, all drains, tubes and lines are removed by the mortuary APTs when the child is released from the mortuary.

If a coroners post mortem is to be performed, lines, tubes and drains must not be removed but left in situ (Rationales 23 and 85).

Renew dressings and secure them using waterproof adhesive tape (Rationale 84).

If the child has a high intestinal stoma, a new stoma appliance may be applied rather than a gauze dressing or a larger than usual nappy (Rationale 86).

Express the bladder by gently pressing on the abdomen below the belly button, into a foil bowl or nappy. Leave a clean nappy on if this is usual for the child. Do not do this if it is a coroners/ forensic case (Rationale 85 & 87).

Wash the child as appropriate and brush the child's hair into their usual style.

Dress the child in their own clothes, preferably chosen by the family. If there is a lot of leakage it’s important to explain to the family that you might need to change the clothes again and therefore will need a second set (Rationale 88).

Lay the child flat with a pillow under the head and neck ensuring limbs are straight as possible.

Eyes should be gently closed by shutting the eye lids.

Clean and remake the bed using clean bed linen (Rationale 89).

Check that the child's identity band displays the following: (Rationale 90)

  • Full name; confirm with parent/s which names they are going to use for registering the death as this may be different from the name currently being used. Check the names are spelt correctly.  If the name is different, print new name badge and attach that to the child.
  • The NHS number if available.
  • Hospital registration number 
  • Date of birth.

A second identity band with the same information must be applied to another limb (Rationale 90).

Leave the child with any special toys which are labelled with an identity bracelet, items of significant to the child / young person as appropriate. Label any toys with the child’s identity bands.

Practical actions: keepsakes

Parents may ask to take photographs or video during the child's last days or after death. If so, they should be asked if they would like help to do this (Rationale 91). If families do not have their own camera, Medical Illustration may be contacted during office hours. At other times, the clinical site practitioner (CSP) may be able to help (Rationale 92). 

Mementoes of the child should be offered to the family before they leave the hospital, e.g. Memory boxes under 1’s and boxes for ages 5-16 year olds kept on ICU’s and bereavement services. Organza bags for locks of hair are provided in the 'When a Child Dies Box' (Rationale 93). This can be done on behalf of the family but only with their consent (Rationale 94). Hand and footprint equipment/paints are kept in the ICU’s and play specialists on the wards. 

If the parents do not wish to take the mementos at this time, staff may offer to retain the items in the child's notes until a later time (Rationales 93 and 35).

Practical actions: special considerations for infection control

If the child has died from a known or suspected infectious disease the mortuary APT (Anatomical Pathology Technician) and/or collecting funeral director must be informed (Rationale 95). Please see further guidance if required.

The child should be placed in a body bag once they are in the mortuary; body bags are kept in the Mortuary. 

Highlight that there is an infection on the mortuary admission forms and / or on the wipe board. (Rationale 96)

The child may be removed from the body bag for viewing but must be put back into the bag afterwards (Rationale 97).

If the child is removed from the body bag for viewing or examination, infectious precautions must be maintained as when the child was alive, i.e., the wearing of protective clothing. This clothing must also be offered to family members.

Used linen should be disposed of according to the Linen Management Policy, i.e., in the infectious linen bag.

On-going care of the body

It is important to be aware of  physical changes (Algor mortis, changes to eyes & skin, livor mortis, rigor mortis) These changes can be frightening for the family therefore appropriate information of changes needs to be shared gently at every stage. (Together for Short Lives, 2012, p36).

Moving the child: to the mortuary

In hours: contact the Mortuary Manager to advise of the transfer (Rationale 98).

  • Mon – Thu 08:00 -17:00 / Fri 09:00 -17:00
  • Out of hours: the Mortuary swipe card can be obtained from the CSPs (Rationale 103).

The child may be transferred to the Mortuary as follows (see WACD Box): (Rationale 99). 

  • On their own bed (beware of lift height in mortuary area) or 
  • A baby can be carried in the arms of a nurse, parent or carer, wrapped in a blanket, which is replaced with a sheet on arrival in the Mortuary  (Rationale 100
  • In the mortuary concealment trolley. 

The child must be accompanied by a nurse (Rationale 101). Porters should be asked to help move the child from the ward if necessary (Rationale 102).

The child should be placed in the Mortuary according to the instructions located on the fridge door (Rationale 104). The child should be wrapped in a sheet with any accompanying toys, which should be labelled as belonging to the child before being laid supine and using the head pillows which are stored on each tray in the mortuary refrigerator (Rationale 105). Any special blanket may be left with the child (Rationale 106).

The family may arrange to see their child in the mortuary viewing room known as the bedroom but this needs to be pre-arranged with the mortuary team or CSP’s out of hours.

The child should be prepared prior to the family seeing their child. Check for any leakage; replace nappy if necessary (Rationale 107). Advise the family that the child will feel cold and tell them if colour changes have occurred (Rationale 108).

Toys or other items may be left with the child. These items should be clearly labelled with the name of the child and added to the 'mortuary admission form' (Appendix 2). These forms are kept on the desk in the Mortuary (Rationales 109 and 110).

If parents wish to leave jewellery with their child it is advisable to keep the quantities to a minimum (Rationale 111). If jewellery or religious artefacts are left, this must be indicated in the 'property’ section of the mortuary admissions form along with a full description of the items (Rationale 29).

The completed Mortuary Admission Form must be placed in the basket.

All details, as requested, should be entered on the mortuary admission’s form. 

The name of the child should be written on the appropriate section on the white board as to which section and fridge the child has been placed in (Rationale 112). 

Moving the child: home, hospice or funeral directors 

Some families may wish to take their baby/child from the hospital themselves and staff should advise and support parents/carers in doing so. Bereavement or CSP staff can assist with arrangements. Ward staff should ensure that the family have a family member or friend waiting to receive them when returning home, or going to their local children's hospice or funeral director with their child (see WACD Box) (Rationale 113).

The family must have the Medical Certificate of Cause Death before taking their child home. Some children being taken abroad may also require a 'Freedom from Infection' Declaration (see WACD Box) and a coroners, ’out of England ‘ form which is requested by the funeral directors (Rationale 114).

The child may be taken home using funeral director or the parent's own transport. If neither of these are available and the parents wish to travel with their child the ward can cover costs or a transport car can be arranged; contact Bereavement service staff or Clinical Site Practitioners for advice (Rationale 115). It is not advisable for the parent to be the driver of the transport and every effort should be made to identify another driver.

The child's details must be entered onto a mortuary transfer of care form in (WACD box) and given to the parents who pass this on to their funeral director or alternatively fill in themselves if they are taking the child home directly (Rationale 116).

The mortuary staff will ask for the Transfer of Care Form to be completed and be handed to whoever is collecting the child from the mortuary (Appendix 3) (Rationale 117).

If the parents wish to take their child home using their own transport, they should also receive a proforma letter detailing the circumstances of their journey (See WACD Box) (Rationales 74 and 118).

Families wishing to take the child themselves should be escorted through the mortuary exit to the yard by the Octav Botnar Wing to facilitate vehicle access (Rationale 119).

Families should be reminded that they should register their child's death within five days, at Camden Town Hall, or in their own locality (Rationale 23). Advice may be sought from Bereavement service manager (extension 8551) or the CSP.

Additional Information 

After the family have spent time with their child, if they do not want to assist with final care, they should be provided with a quiet room away from the child's bedside (Rationale 120).

The family should be given the opportunity to telephone a friend or relative to join them. 

Before leaving the hospital the family should be told: (Rationale 28).

  • What will happen to their child. 
  • They may return to see their child at any time but a time must be arranged (Rationale 121)
  • To contact the ward in advance of this (Rationale 122
  • The phone number for the ward 
  • A specific staff member to ask for (wherever possible) 
  • That they will receive an appointment 6-8 weeks to return to the hospital to meet their child's consultant and other staff to talk over anything they wish to discuss.

They should be given the parents information pack containing the leaflet; 'When a Child Dies' and the Child Death Helpline leaflet (Rationale 123).

Mothers who are breast feeding. The following advice may be offered to lactating mothers: (Rationale 124)

  • To wear a firm, well supporting bra 
  • To take regular analgesia 
  • To seek advice from their own midwife or health visitor once they return home
  • Advise mothers to reduce supply over a few days by expressing and reduce the frequency over a period of days 
  • Ask lactating mother what they would like to do with their frozen breast milk.
  • If they want to donate milk, to contact United Kingdom Association for Milk Banking (UK AMB).

When the family are ready to leave, if leaving without the child, they should be accompanied from the ward or mortuary to the main entrance of the hospital (Rationale 125). The nurse should establish how the family are returning home. Transport, may have to be arranged and possibly paid for by the Trust. Advice may be sought from the CSP (Rationale 126).

Communications with the family is advisable within the first 48hrs of the child death and should be recorded in their notes what was discussed (Rationale 127).

A Communication Checklist sticker, available in the 'When a Child Dies' box, should be completed and stuck on the front of the GOSH health record.

Child Death Overview Processes

Staff must ensure that the Bereavement service is notified as soon as is practicable on ext 8551 (24hr voicemail) with the child's name, date and time of death, patient number and whether the death was expected or unexpected. This notification triggers the Child Death Overview Processes (CDOP) as explained in the Information Sharing Policy (see Document Library) (Rationale 128).

Staff support 

A debriefing for all staff involved should be offered as a matter of good practice (Rationales 129 and 130). The aim of the first is to offer support to all staff members involved in the case on the shift, the second is a more reflective debrief including all members of the team around the child. This should be arranged at a time to suit most of the staff and could be repeated if necessary. It is best held while any issues are fresh; within two weeks of the child’s death is best practice. Debriefings can be facilitated by Palliative care staff, Bereavement service Manager, Chaplaincy or Psychology staff if teams wish (Rationale 131).

Staff can also seek support from Care First anonymously via GOSH web.

Bereavement Support

Definition of terms:

Bereavement Contact: Named nurse contacting the family within 24 hours of child or young person’s death, to answer practical questions, ask about further support.

Bereavement Information Pack: Information leaflets given to the family when a child or young person dies. Includes: 

  • When a Child Dies Information for Families
  • Child Death Helpline
  • Other information leaflets can be added as appropriate.

Bereavement Support Sessions: Face to face or telephone support offered by bereavement service, which includes:

  • Memory work, understanding the grief process, coping strategies
  • Parents, siblings, wider family that have no local bereavement support

Referral discussed and agreed with family
Referrals for high risk families (suicidal, self-harm, other mental health diagnosis) are not appropriate.

Medical bereavement follow up: Doctors and medical team review child or young person’s clinical case with the family

Memory Work: Work with the child or young person and family at the time of death e.g. photos, handprints, lock of hair), visits to mortuary, chaplaincy

Named Professional: A member of the Multi-Disciplinary Team (MDT) who knew the family prior to the child or young person dying, e.g. consultant, Clinical Nurse Specialist, Family Liaison Nurse. Named professional to be identified in MDT / Psychosocial meeting.

Rationale

Rationale 1: To provide a further reference point of information for any member of staff and tools for use.
Rationale 2: As a last act of physical caring for the child.
Rationale 3: Recognising this can be an emotionally difficult aspect of care for staff.
Rationale 4: It may be important to the family that the child does not die prior to baptism.
Rationale 5: There is 24-hour cover provided by the Chaplaincy team.
Rationale 6: Sometimes Chaplaincy may not be able to respond quickly enough.
Rationale 7: Baptism does not have to be carried out by a minister of religion.
Rationale 8: Baptism can only be performed once.
Rationale 9: These are held in the Chaplaincy department and are completed by the individual who baptised the child.
Rationale 10: Baptism is a sacrament reserved for the living.
Rationale 11: To offer some comfort to the family.
Rationale 12: To ensure all information is held in one place.
Rationale 13: Contents always up to date and ready for use.
Rationale 14: Staff with expertise in issues around dying can support and advise others.
Rationale 15: Preparation can help families regain some element of control.
Rationale 16: To facilitate good communication.
Rationale 17: To initiate practical help and support.
Rationale 18: To ensure the local services are informed and ready to support the family on their return home.
Rationale 19: To ensure subsequent communications to the family are accurate.
Rationale 20: To ensure an accurate record.
Rationale 21: To enhance family focused communication and practice.
Rationale 22: To facilitate the breaking of bad news in as sensitive a way as possible and to have support at hand for the family receiving the news.
Rationale 23: To meet legal requirements for Public Health England.
Rationale 23a: To inform infection prevention and control.
Rationale 24: To obtain consent.
Rationale 25: To maximise viability of organs for donation.
Rationale 26: To ensure good communication.
Rationale 27: To initiate later support for family with local resources.
Rationale 28: To keep family informed.
Rationale 29: For audit purposes.
Rationale 30: To give tangible items for the family with which to remember their child.
Rationale 31: To provide psychological support for the family and give some choices for them to exercise their wishes.
Rationale 32: To provide practical advice or refer to staff who can do this.
Rationale 33: To ensure family are safe to travel.
Rationale 34: To give written information that the family can later refer to.
Rationale 35: To raise appropriate awareness and alleviate uncertainties.
Rationale 36: To certify death.
Rationale 37: To document that the child has died.
Rationale 38: The death certificate is required to register a death.
Rationale 39: To save the family from returning at a later date.
Rationale 40: The cause of death will not yet be established.
Rationale 41: To avoid difficulties when the death is registered.
Rationale 42: If a family feel unable to do it themselves even with support and encouragement.
Rationale 43: To enable choice.
Rationale 44 To enable the funeral to proceed.
Rationale 45: To apply for a funeral grant from the Benefits Agency.
Rationale 46: This is needed to arrange a funeral abroad or if the child had a savings account.
Rationale 47: To enable the funeral to be planned.
Rationale 48: Where parents are unmarried, only the child’s mother has parental responsibility unless father is named on the birth certificate.
Rationale 49: To establish cause of death.
Rationale 50: To further medical knowledge.
Rationale 51: A full post mortem is not always required.
Rationale 52: To comply with good practice.
Rationale 53: To obtain informed consent.
Rationale 54: For future reference.
Rationale 55: To provide any additional information related to their child’s death and to explore related issues and concerns.
Rationale 56: To ensure there are no objections.
Rationale 57: To enable samples to be taken immediately on death.
Rationale 58: To provide background information for investigation.
Rationale 59: It may enable the post mortem to be limited.
Rationale 60: To prevent degeneration of the tissues rendering the investigation less useful.
Rationale 61: Organ/tissue donation may represent the only positive outcome for the family, which may provide them with some comfort at a time of huge loss.
Rationale 62: To ensure all patients where donation is a possibility are given this choice as part of end of life care. For further information, see Human Tissue Authority (HTA) (2014a, 2014b) guidance.
Rationale 63: Donation should only be offered to families if it is a real possibility, expert advice on this should be sought.
Rationale 64: Donation should be considered in all cases where it is a possibility.
Rationale 65: Specialist Nurse – Organ donations (SNOD) are best placed to ascertain the suitability of any potential donor.
Rationale 66: To prevent making incorrect assumptions; NHS Blood and Transplant
Rationale 67: A collaborative approach between the Specialist Nurse – Organ Donations and staff involved in the child’s care provides holistic care.
Rationale 68: To ensure privacy and dignity to the bereaved family.
Rationale 69: To meet legal requirements and to ensure best practice.
Rationale 70: It is mandatory for the Coroner to be consulted for permission for donation to proceed (HTA, 2014b).
Rationale 71: To ensure optimal management of the potential donor and family.
Rationale 72: The Specialist Nurse – Organ Donations, to aid forward planning and to the retrieval process, does this.
Rationale 73: To ensure parents are given all options for donation.
Rationale 74: To supply further information.
Rationale 75: They may or may not follow expected practice.
Rationale 76: To provide appropriate information and support according to families’ wishes.
Rationale 77: To consult with and to visit if requested.
Rationale 78: To ensure appropriate response to sudden unexpected death.
Rationale 79: To enable the family to be involved if they choose.
Rationale 80: To prevent cross infection.
Rationale 81: To normalise the environment.
Rationale 82: To prevent leakage of secretions.
Rationale 83: To leave the child in a ‘natural’ state.
Rationale 84: To prevent leakage of body fluids.
Rationale 85: To facilitate investigation of cause of death.
Rationale 86: To prevent oozing of secretions.
Rationale 87: To ensure the bladder is empty.
Rationale 88: A second set of clothes is useful if there has been leakage.
Rationale 89: To ensure the bed is aesthetically pleasing.
Rationale 90: To facilitate ease of identification.
Rationale 91: To provide a source of comfort.
Rationale 92: To retain a permanent memory of their child.
Rationale 93: To be a source of comfort, in the future.
Rationale 94: Ask the parent what they would like and how they would like it done, to empower the parent and ensure their wishes are carried out.
Rationale 95: To meet government recommendations.
Rationale 96: To reduce risk by ensuring correct communication.
Rationale 97: For aesthetic reasons.
Rationale 98: Mortuary receives children external to GOSH so can be busy with funeral directors and police therefore always check their availability.
Rationale 99: To facilitate the transfer of the child.
Rationale 100: This can appear to be more normal, avoid distress for the family and will attract minimal attention from onlookers.
Rationale 101: To complete the caring process.
Rationale 102: To facilitate the safe and smooth transfer of the child.
Rationale 103: To gain access to the department.
Rationale 104: To ensure safe placement.
Rationale 105: To maintain the child in as optimal condition as possible until they are collected by the undertakers.
Rationale 106: It can be used to re-wrap the child if their family visits at a later date.
Rationale 107: To ensure the child is prepared appropriately removing the mortuary sheet and restoring the appearance of the child.
Rationale 108: To prepare the family for what to expect.
Rationale 109: These familiar items can provide comfort to the child’s family.
Rationale 110: To ensure each child has its own possessions.
Rationale 111: Large quantities of valuables are a security risk.
Rationale 112: The mortuary manager needs to know the child’s location in the fridge and diagnosis.
Rationale 113: Unless a post mortem is required there is no legal reason why they cannot do so.
Rationale 114: Death has to be certified before a child can be removed from the hospital.
Rationale 115: To meet the requirements of the family.
Rationale 116: This is a requirement that we can track who’s been responsible for the body and location.
Rationale 117: The mortuary staff have to be made aware of all deaths and this form enables them to keep a track on the deceased.
Rationale 118: To avoid distressing enquires, e.g. from the police.
Rationale 119: To avoid unnecessary disturbance in the hospital.
Rationale 120: To ensure privacy.
Rationale 121: Due to increase usage this ensures family have time and support for viewing.
Rationale 122: To enable the visit to be organised.
Rationale 123: It contains a summary of the actions that need to be taken.
Rationale 124: To offer guidance and support.
Rationale 125: To provide support.
Rationale 126: To ensure the families safety.
Rationale 127: To provide a documentary record.
Rationale 128: To ensure compliance with current guidance.
Rationale 129: To promote opportunity for team reflection and for individuals to raise any concerns.
Rationale 130: To enable staff to achieve closure.
Rationale 131: To have a ‘neutral’ facilitator assists the reflection

References

Academy of Medical Royal Colleges (2010), A Code of Practice for the Diagnosis and Confirmation of Death[Accessed on 03.11.2016]

Great Ormond Street Hospital for Children NHS Foundation Trust (2015) When a Child Dies - Booklet for Staff. London, Great Ormond Street Hospital

Hospice UK and National Nurse Consultant Group (2015) Care after death: Guidance for staff responsible for care after death. (2nd Edition) Hospice UK and National Nurse Consultant Group (Palliative Care).

Human Tissue Authority (HTA) (2014a) Code of Practice [Accessed on 03.11.2016]

Human Tissue Authority (HTA) (2014b) Code of practice 2 Donation of solid organs for transplantation. [Accessed on 03.11.2016] 

Royal College of Paediatrics and Child Health (2015). The diagnosis of death by neurological criteria in infants less than two months old. RCPCH. [Accessed 03.11.2016].

Together for short lives (2012). A guide to End of Life care – Care of children and young people before death, at the time of death and after death. Together for short lives: Bristol. [Accessed on 03.11.2016]

United Kingdom Association for Milk Banking. Guidance on donating expressed  breast milk after the loss of a baby. [Accessed 03.11.2016]

Bibliography

Department for Education (2013) Working together to safeguard children Ch5 Child death reviews. [Accessed on 03.11.2016]

Department of Health (HMSO) (2005) When a patient dies. London, DH Publications [Accessed on 03.11.2016]

Department of Health (2011) Guidance on the Microbiological Safety of Human Organs, Tissues and Cells used in Transplantation. [Accessed on 03.11.2016]

Ministry of Justice (2008) Cremation Regulations. [Accessed on 03.11.2016]

NICE (2011) Organ donation for transplantation: improving donor identification and consent rates for deceased organ donation. [Accessed on 03.11.2016]

Document control information

Lead Author(s)

Rachel Cooke, Bereavement service Manager, Bereavement Services

Additional Author(s)

End of Life Care Group

Document owner(s)

Rachel Cooke, Bereavement service Manager, Bereavement Services

Approved by

Guideline Approval Group

Reviewing and Versioning

First introduced: 
06 March 2003
Date approved: 
26 August 2016
Review schedule: 
Three years
Next review: 
26 August 2019
Document version: 
8.0
Previous version: 
7.0