After a Child’s Death
There should be no rush attached to the time immediately after a child’s death. Where families experience a calm environment, this will help them make the most of the precious time they have left with their child’s body. Some parents will wish to be alone – others will prefer someone to be available to offer them support and guidance.
Families need professionals who possess practical skills, combined with the knowledge of the ethical and legal factors that are intrinsic to after life care. Caring for children and families requires special skills and sensitivities. Identifying and meeting individual cultural or religious needs and wishes is an important part of that care. The spiritual needs of families when their child’s death is very near are broadly similar, regardless of faith or culture. Privacy, dignity, a peaceful environment, and good symptom control, are always important. Religious ceremonies can vary and in some religions, they are carried out by faith leaders, in others by the family or members of the religious community.
“After Caleb passed away, back at home we held him between us through the night not wanting to let go and dreading the time would be taken away. I was so afraid I would forget how it felt to hold him.” (SOFT UK parent)
Having opportunities to perform caring tasks for their child after their death, does not necessarily mean that all parents will want to be involved. Some parents will stay with their child for a few minutes after their death, others for hours or even days. Choices are very individual between and within families, with some family members needing to adjust very quickly to a situation where time is running out.
“I was welcomed to the parent accommodation, and we stayed there until her funeral. Nothing was too much trouble for the staff and often I popped down to the bedroom where she was just to check on her and give her one more cuddle.” (SOFT parent)
“She was in her own little bedroom at home with her teddy and her books. Our youngest son made a card and put it on the pillow beside her. It was beautiful and peaceful.” (SOFT bereaved parent)
Brown (2018) writes about the “healing and therapeutic” experience of parents washing and dressing their child. Touching their child’s body will also help them to experience the physical changes of death and realise what has happened.
Some parents may not want anyone else to touch their child’s body after death, taking the child home or to the Funeral Director’s themselves. Memories of your child will be very precious to parents and tangible mementos such as photographs, handprints, locks of hair, footprints, toys, or clothing, will bring comfort and a sense of reality of your child’s existence in the years ahead.
“We have pictures of Robert everywhere around the house. We also have a memory box with special things. We take them out on his birthday and at Christmas and talk about the times we shared together.” (SOFT UK parent)
In their discussion regarding things that help bereaved parents, Riches and Dawson (2010) express the importance of parents being able to acknowledge their child’s end of life as a ‘good death’. Research suggests that when parents feel that their needs have been considered, this is likely to influence their grief later on (Riches and Dawson, 2004).
Key Points
Understanding a family’s perception of the end of life stage of care can be challenging.
Families need to know that the information they receive is trustworthy and honest.
End of life care should take place in a family’s home whenever possible.
Families value volunteers who have good communication and good interpersonal skills.
Families will recall the events leading up to their child’s death very clearly.
Parents who are enabled to continue caring for their child after the child’s death are more likely to
accept the reality of the situation.
Memories parents have of their children are very precious and tangible mementoes such as photos,
Footprints/ handprints and locks of hair will bring comfort in years to come.
After a Child’s Death
For many parents, seeing their child’s body is an affirmation that they have died and a powerful first step in the journey of grief. Seeing, touching, holding and talking to their child have special significance to parents and usually there is no reason why they are not able to care for their child’s body after death and before the funeral (Brown, 2018; Great Ormond Street, 2008).
Most families with a life-limited child will have thought about their child’s funeral before the child has died (Goldman, 2012). Often this accompanies other thoughts which form part of what has become to be known as ‘anticipatory grief’. Parents may need help and support to talk about their fears, wishes and beliefs about cremation or burial so that they are able to make an informed choice.
Arranging a child’s funeral is an extremely stressful time, especially when many parents are already physically and emotionally exhausted. ‘Phoning the funeral director, and hearing themselves ask for the services available, is likely to be one of the most difficult tasks that families face immediately after their child’s death. Those who support parents now play an important role. In the weeks and months ahead, parents need to look back on their child’s funeral and feel that they were able to plan the occasion in the way that was right for them.
Religious and cultural requirements vary greatly. Most funeral directors will be willing to make the arrangements but, if they take complete charge, plans may suit the funeral director’s agenda rather than the parents.
The choice of place for the service is likely to be determined by the locality of the family home and factors such as the cultural or faith background of the family, or the person who is chosen to officiate at the service. Families will remember the place and it is therefore important that they are made to feel as comfortable as possible. Although visiting the chosen place beforehand may not be possible, parents who know what the place is like, what is going to happen and where, generally find that this helps on the funeral day itself.