Policy piece

14th December 2016 • My Family Our Needs

End of life care must be for the whole family not just the dying child, says new guidance from the National Institute for Health and Care Excellence (NICE).

NICE is advising people working in health and social care to make sure mothers and fathers, brothers and sisters get the practical and emotional support they need to care for a family member at the end of life.

Around 40,000 children and young people are estimated to be terminally ill in England. They can have complex needs and can require 24-hour care.

Parents, and often siblings, become carers. Dr David Vickers, Consultant Paediatrician Chair of the NICE Guideline Committee explains, ‘Mothers and fathers can be forced into a medical role to provide the care their son or daughter needs. It is important for us to recognise this and offer help to alleviate the pressure.’

Part of supporting the whole family at this time is planning for their final moments together. Experts stressed how important this was.

The guidance says medical teams should talk to the child and their family about where they’d like to spend their final days together and help arrange that care where possible. The team should guide them through any treatment decisions they’ll need to make and ensure that spiritual support is available, if they want it.

‘To lose a child is a tragic, life-changing event. But the care given to a child and their family during this difficult time can offer great comfort, if done properly.

‘This guidance clearly sets out best practice for all those involved in palliative care, whether that be at home, in a hospice or in a hospital.

‘I hope it will be implemented fully so that those families going through the worst time of their lives are properly supported,’ says Professor Mark Baker, Director for the Centre of Guidelines at NICE.

NICE says the medical and social care team responsible for a child’s care at the end of life should be aware the needs of the family may change as the child’s illness progresses. The guideline says they need to adapt to the family’s requirements where possible. This may mean arranging a birthday party at the hospice or for school work to be sent to the hospital if the child is taking exams and wishes to study.

The guidance was developed with the help of children at the end of their lives, as well as their brothers and sisters, in order to reflect what they felt was important from their care.

Guideline focus groups took place in Yorkshire, London and Bristol. Children and young people aged between 12 to 18 years participated, using it as a chance to tell NICE what they think good end of life care looks like.

They told us that they valued being involved in decisions about their care and were glad NICE recognised the importance in tailoring care for the individual’s needs.

The children also expressed a desire to enjoy their lives. They did not want to be defined by their illness and symptoms.

End of life care

End of life care for infants, children and young people with life-limiting conditions: planning and management – NICE guideline [NG61]

The End of life care for infants, children and young people with life-limiting conditions guideline covers the planning and management of end of life and palliative care for infants, children and young people (aged 0-17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

The guideline does not cover children and young people without a life-limiting condition who die unexpectedly (for example, accidental death).

The guideline includes recommendations on:

 Who is it for?

  • Health and social care professionals.
  • Children and young people with life-limiting conditions and their families and carers.
  • All other professionals involved in caring for infants, children and young people with life-limiting conditions (for example, education professionals and chaplains).
  • Commissioners and providers.