At the time of telling parents or carers that their baby or child has died, explain sensitively but clearly what steps will be taken next. Parents in shock can be distressed and confused and need your direction and guidance. The same is true for siblings or other children in the family.

Giving information and time

Don’t just give information and leave. Let parents know when and where they will see you again, and be specific regarding the place and time agreed.

Parents need to be given the choice to participate as much as they wish in the care of their child after the death. A clear unhurried time needs to be available for them to be with their child before he or she is transferred to the mortuary. Don’t hurry parents; allow them as much time as they need, alone or with grandparents, siblings and friends. This time is vital in their grieving process.

Offering parents choices and involvement

It is very important for parents or carers to be able to choose how they and their child are cared for. They will need all the information on the options open to them, time to understand this information and time to make their decisions.

Choices and decisions that families need to know about include:

• Holding their baby or child
• Washing or helping to bath their baby or child
• Choosing clothes and dressing their baby or child
• Being involved in all aspects of their baby or child’s care
• Taking photographs of their baby, both dressed and naked
• How long they can have their baby or child with them after the death
• Who they should contact if they would like to return to hospital to see their baby or child before the funeral
• How they may include any other children they have. Parents often want to protect their children from these painful experiences and will need help to explain to children that their brother or sister has died, and how to support their children to say goodbye)  
• How they involve grandparents, other relatives and close friends
• Whether to take their child home before the funeral
• What sort of funeral to have. A funeral may feel like the only thing that parents can do for their child and it needs to be carefully planned. In some cases, the hospital can offer to arrange a funeral.
• Visiting their child at the funeral directors

Post mortem examination

With a sudden death, a coroner’s post mortem examination is required because the death is unexpected. It is appropriate to explain this to the parents and to tell them this is a legal requirement. Detailed verbal and written information should be given to parents about the post mortem examination and possible inquest. Families will need time to absorb, understand and discuss the implications of a post mortem. It is also important to acknowledge that for the family, having no choice about this happening may be very difficult.

The Human Tissue Authority produces codes of practice give professionals practical guidance on human tissue legislation.

Leaving the hospital and follow up

• Let parents know you will be telling the relevant community professionals that their child has died.
• Speak directly to a member of the primary healthcare team as soon as possible and inform them of the circumstances surrounding the death. This all helps with the continuity of care.
• When families leave the hospital, offer to walk with them to their car.

Bereaved parents value receiving the written offer of a follow-up appointment with their child’s consultant(s) within about six weeks of their child’s death. The following is helpful to consider with a follow-up letter:

• Include an invitation to bring along another family member or friend, if they wish.
• Ask if they would like their child’s nurse, midwife or other member of the hospital team to be present. Often they wish to see the nurse or midwife who was present at the time of death.
• If the child is well known to other wards and health care professionals, then the follow up may possibly be better from them, for example the oncology team.
• Ask the parents if the venue for a meeting is acceptable. Some parents may not yet be ready to revisit the place where their child died.

If parents do not choose to accept a follow-up appointment, they need to be sent written information about how they can request a follow-up consultation in their own time. Provide them with the name and telephone number of a contact person or suggest they ask via their GP.

A follow-up appointment is important because:

• It gives the parents the opportunity to ask questions and clarify issues of treatment, their child’s responses to treatment, care given and any post-mortem findings.
• Parents may be feeling regret or guilt at not having asked certain questions or acted in some specific way when their child was alive, or they may be blaming themselves in some way. Open, honest communication, sensitively given, is likely to deepen parents’ understanding and support the grieving process.
• It is another opportunity to assess with the family their needs for referral for bereavement support and to address any needs of siblings, such as revisiting and saying goodbye to members of staff, other children, playrooms, schoolrooms etc. that may have featured significantly in their lives at a critical time.
• Feedback to staff from families about the good care they received can help staff to increase confidence and self-esteem.

See also:

> When your baby dies

> Grieving for a child of any age

> Supporting bereaved adults

> Telling a child that someone has died

> Supporting bereaved children and young people

> Looking after yourself