Aim to ensure everyone, including first responders, understands the significance of their communication with the family and one another and acts with care and compassion. Be familiar with the processes and refer to your Board procedures.
Families tell us the way staff speak and act at this initial stage has a lasting impact on their bereavement journey. It is a traumatic situation and one in which they feel vulnerable. They need staff to tell them sensitively what is happening, why it happens and what will happen next.
What do we need to do?
At all times
- Remember to keep within the scope of your practice when providing information, explaining procedures or answering questions. Be prepared to consult with or refer to suitably trained colleagues whenever necessary.
- Offer care and support to the whole family, including step and extended families.
- Keep an open mind about how families react. There is no right or wrong reaction to sudden death and grief, and anger is a common expression of emotion.
- Be aware that families often blame themselves, no matter what the circumstances – they will often already be aware of their specific risk factors.
- There are known risk factors for sudden infant death syndrome (SIDS), but these are not causes of death – take care to avoid suggesting guilt when discussing these. Use phrases such as ‘would you like to tell me what happened’ rather than ‘why didn’t you?’ Say you are sorry and acknowledge the distress.
- Keep the family informed and give realistic time scales and honest information keeping to known facts, however difficult this is.
- Understand that the presence of police, even when not in uniform, will have an impact on the family and the wider community, and avoid using terms such as ‘suspicious death’ and ‘crime scene’.
When talking with families
- Communicate sensitively and be aware of your language and non-verbal signals.
- Listen effectively – it is a very important skill that families will often remember.
- Introduce yourself, your name, your role and what you are going to do.
- Find out the baby’s and parents’ names and use them.
- Use simple direct language including the words ‘died’, avoid euphemisms and do not be overly apologetic.
- Give information plainly and invite questions as you go along.
- Don’t assume someone else has given any information to families.
- Establish and confirm what happens next.
Arrival of services
- Most unexpected infant deaths are found by their families, who will call an ambulance. The initial 999 call will request an ambulance and also notify Police Scotland, who will also attend. Be aware that this is an extremely distressing experience for families, who will often not be expecting the police. Reassure parents that police involvement is routine.
- The family should be supported to attend the hospital, either travelling with their baby in the ambulance, or separately.
Consider the needs of other children or family members. Attending police may be able to assist with these arrangements.
On arrival at the hospital
In rare cases, a baby can die suddenly and unexpectedly on the postnatal ward. Although families can go home immediately, the same bereavement care set should be used.
- At the hospital, allocate a lead healthcare professional to the family and keep them fully informed, in an appropriate quiet and private space.
- Where resuscitation is ongoing, it is good practice to allow the parents to remain present if they wish to and ensure they are supported.
- Reiterate that Police and Procurator Fiscal involvement is routine in all sudden and unexpected deaths as required by law in Scotland. Families should know that these professionals will be involved from the outset and that their role is not to investigate families but to help find out what happened to their child.
- Working collaboratively, ensure that police presence is as discreet as it can be, given their need to be present. For example, if there are two uniformed officers present, quietly discuss the possibility of one staying close to the family without their radio whilst the other could take on the role of communicating with colleagues and is not in the room.
When death is confirmed
- Give families as much opportunity to be with their baby at this stage
- Provide a quiet, private and comfortable space away from the main clinical area if possible.
- Explain someone will remain with them at all times to give support so they won’t be left on their own, but staff will be as discreet as possible and give them space.
- Give the family as much time as they need.
- Ensure the family hold their baby if that is possible.
- Wherever possible, assign two people to care for the family, as they are likely to be with them for up to 5-6 hours and staff will need to take drinking and toilet breaks.
- In early interviews, carefully balance the needs of the information gathering with the shock, trauma and grief of families. Wherever possible, work jointly with other professionals to
save the family from needing to repeat the same information.
- If the baby who died was from a multiple birth, reassure the family as far as possible about their other baby or babies and explain they can be provided with an apnoea monitor by the Scottish Cot Death Trust. Where possible, the surviving baby or babies should be admitted for observation.
Before the family leave hospital
- Support the family with practical arrangements, such as where they will stay because they will not be able to return home immediately due to the early police investigation. Reference your own NHS board’s policy on this.
- Ask about any medicines or essential items which any family member may need so they can be provided by Police Scotland to the family as quickly as possible. Consider a family photograph or photograph of the baby and/or comforter toys for siblings as essential items.
- Explain paediatric post-mortems are highly specialised and the baby will be transferred to a paediatric pathology centre and, if known at that time, say which centre that will be.
- Reassure the family their baby will be travelling safely to the paediatric pathology centre and handled with respect. Explain it is likely that another family member will need to formally identify the baby there - and this may require the parent/family member to travel.
- Provide contact details for a key healthcare professional who will answer the family’s questions and provide updates. U
- Give the family contact details of support organisations and bereavement counselling and provide the leaflet (above) from the Emergency Department SUDI pack
- Explain the emotional support available via your hospital and primary care colleagues.
- Offer contact with the chaplaincy team and explain how they can support families, noting they can liaise with religious and spiritual advisers of all local faiths and humanist celebrants.
- Identify the key healthcare contact for any questions the family have.
- Notify the GP (ideally by email or urgent fax) to inform the practice about the baby’s death and to request no further appointments for immunisation or developmental checks are sent out.
- Inform the hospital medical records department to ensure no clinic appointments are sent.
- Inform the family that any future routine health check or immunisation appointments will be cancelled.
How will we know we have achieved our aim?
Families will tell us that they felt cared for and that they were kept informed of what was happening, why it happens and what they could expect next. They will tell us that no judgements on how their baby died were made at this early time by staff and that they felt that staff put their needs first.
Staff will tell us they feel confident and competent providing information about the early actions and being clear that, at this stage, no one can say why baby died and so legal procedures must be followed.