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Caring for life, death and beyond in children’s palliative care

Carer playing with child at a children's hospice

Across the UK this week, charities, volunteers and fundraisers have been celebrating the tireless work of children’s palliative care teams as part of Children’s Hospice Week, supported by the Duchess of Cambridge.

Children’s palliative care charity Together for Short Lives has been behind a national campaign, #UpTheVolume, to raise awareness of the work that hospices do to support children and their families, week in and week out, throughout the year.

When a child has a life-limiting condition, hospice teams and palliative care staff can help families make the most of the time they have left together.

“As well as helping families to make the most of every moment, services also support families to collect memories that are meaningful,” says Jane Houghton, Together For Short Lives’ practice and service development manager. “This can be a really unifying experience for the whole family.”

The charity has found that supporting families and children to create a ‘life story’ of the child can be a joyful bonding experience in life and bring comfort, following a death. It’s just one of the ways in which hospice care supports families through life and a bereavement.

For many of the families accessing palliative care, there will come a time when they have to say goodbye. When a child dies, the hospice and palliative care staff stand beside the family throughout it all.

“Many people assume that the role of children’s palliative care services comes to an end when a child dies,” says Jane. “In fact, care of the child and family continues through death and beyond.

“When a child does die, honest and open communication is needed to balance the needs and wishes of the child and family with the practical tasks that need to be undertaken after death.”

Saying goodbye

When a family loses a child, having the chance to say goodbye can be vital. The facilities at hospices make this possible. Among them are cool rooms, which were introduced by the world’s first children’s hospice, Oxford’s Helen House, in the 1980s. The first one was designed to look as much like an ordinary room as possible, with ordinary windows but also the capacity to cool the room as required.

“Most children’s hospices today provide a cool room where children can be placed after they die, until their funeral or before being transferred to a funeral director,” says Jane.

“Children’s hospice cool rooms are usually referred to by an appropriately compassionate name – the star room, for example, or the angel, butterfly or rainbow room. They are usually complemented by an adjoining family suite, where the family can stay and spend time with their child after death.”

The hospice can also support the family if they wish to take their child home, by providing equipment such as an air-conditioning unit or cooling blanket.

Children’s hospices also support families with any practicalities, which can seem overwhelming for families who are trying to cope with the death of a child.

As a member of the Funeral Poverty Alliance, Together For Short Lives has been involved in campaigning to help ease the burden for families at a difficult time, which has led to some UK councils no longer charging for children’s burials and support from members of the medical and funeral professions.

“Foremost is the arrangement of a funeral,” explains Jane. “It is important to know that lots of funeral directors will provide a child’s funeral free of charge. Similarly, many doctors do not charge to sign a child’s death certificate.

Ongoing support

Hospices continue to be there for bereaved families after the death of a child.

“Following the funeral, the family can be asked if they would like further contact,” Jane explains. “Discussing openly what type of support can be offered and by whom can enable the family to feel an element of control in decision making.

“Grief will change over time and different events, anniversaries and other significant moments will have an impact on the experience of grieving. Many children’s hospice services and children’s hospitals offer programmes for ongoing support including sibling days, grandparents’ days and annual remembrance days.

“All of these events continue to provide recognition of the bereaved family and an opportunity for them to remember and celebrate their child.”

According to Together For Short Lives, 49,000 children and young people are living in the UK with health conditions that are life-shortening or life-threatening – and the number is rising. That’s one in every 270 children – the equivalent of one in every school.

The charity has over 900 individuals, teams and organisations among its members, committed to supporting children and young people and their families. To continue to do so, they rely upon the generous support of the public. If you’d like to join in fundraising efforts and raise awareness, you can follow the conversation on Twitter and Facebook with the hashtag #ChildrensHospiceWeek. You may also want to make a donation to Together for Short Lives or your local children’s hospice, which you can find here.