Survey results show lack of choice for UK children at the end of life

Categories: Research.

In an RCN survey that ran during the first three months of this year, fewer than half of children’s nurses (48%) said they felt they had the time, skills and resources to deliver the right levels of palliative care for children.

Nearly a third (31%) of children’s nurses said they don’t have the resources to deliver adequate care in the home setting, and more than half (57%) have had to send a child who asked to die at home to a hospice.

The survey also highlighted inadequacies with the training that children’s nurses receive, with around a quarter (24%) reporting that they are unable to provide symptom management care at home, and almost one in three (31%) saying they lacked the confidence to discuss end of life options with children and their families.

Dr Peter Carter, chief executive and general secretary of the RCN, said that children should have the right to die at home if they wish to, but “without the right levels of time and resources, it is impossible for nurses to provide this choice as they are unable to deliver the specialist care needed.”

Adding: “As nearly all children’s nurses care for terminally ill children, specific training is needed so that children’s nurses have the right skills to deliver high standards of tailored, end of life care. Funding and resources are critical to ensuring that services have the right levels of fully trained staff to care for children and their families in these incredibly difficult situations.”

Responding to the survey, Together for Short Lives backed the RCN call for more resources and training for nurses.

Katrina McNamara, director of service and practice development, commented: “Although there are some excellent examples of children receiving good end of life care both at home, in children’s hospices or in hospital, access to good 24/7 palliative care for children at home is not a reality for the majority of the UK. All too often families tell us that they struggle to get the support they need at home.

“Community nursing services are the bedrock of children’s palliative care, but if we do not invest in training and resourcing them, we will never achieve real choice for families. In the 21st century it is unbearable to think that too many families have little choice in where their child dies.

“Providing excellent care and pain and symptom management for a dying child or young person, and supporting their family is one of the hardest challenges for nursing staff. These nurses need the very best training, knowledge and support, and the confidence to talk to families about end of life care.

“For this to be a reality, we need children’s palliative care to be prioritised by the government. We urgently need more community children’s nurses with the right training, support and confidence to deliver round the clock care wherever and whenever families need it.”

Find out more about the survey on the RCN website and the Together for Short Lives website.