News

Consultation opens into NICE guidance on end-of-life care for children

Guidelines stress the importance of communication and age-appropriate ways of chatting about illness and dying.
Bereavement

Healthcare professionals caring for terminally ill children must never assume there is a do not resuscitate (DNR) order in place, a watchdog has said.

The National Institute for Health and Care Excellence said that while an advance care plan should be made, staff should not 'confuse' it with a DNR plan.

The draft guidance says staff must discuss the needs of children in their final days with families, including whether continuing with food and water is always in the patient's best interests.

Never assume

It adds: 'Never assume that there is a DNR plan in place for a child or young person unless this is explicitly stated in their record.'

The guidance also calls for the issue of organ donation to be raised with families and the outcome of the discussion recorded, while the patient's preferred place of death must also be taken into account.

Healthcare professionals caring for terminally ill children must never assume there is a do not resuscitate (DNR) order in place, a watchdog has said.

The National Institute for Health and Care Excellence said that while an advance care plan should be made, staff should not 'confuse' it with a DNR plan.

The draft guidance says staff must discuss the needs of children in their final days with families, including whether continuing with food and water is always in the patient's best interests.

Never assume

It adds: 'Never assume that there is a DNR plan in place for a child or young person unless this is explicitly stated in their record.'

The guidance also calls for the issue of organ donation to be raised with families and the outcome of the discussion recorded, while the patient's preferred place of death must also be taken into account.

When communicating with young people who are terminally ill, workers should also think creatively about how to chat about illness and dying, such as through one-to-one discussions, play, art and music, social media or pictures.

Best practice examples

NICE’s research found many best practice examples of palliative care nurses finding appropriate ways to discuss death with children, which is age appropriate and done in language and ways they understand.

Many of the recommendations also deal with how to involve family, friends and carers in the discussions, many of whom are often reluctant to tell the truth about death to very young children.

It quotes one nurse as saying: ‘Communication is very important in palliative care. Children, sometimes, during the initial phase of the disease, do not communicate with words, but communicate with their gaze and with touch.’

Way death is handled

It is estimated that more than 40,000 children and young people in England are living with a life-limiting condition.

NICE committee chair and consultant in paediatric palliative care at Helen and Douglas House hospice, Oxford, Guide said: ‘To lose a child is a tragic, unimaginable, life-changing event.

‘However, the way the death is handled by the professionals around a family, can make an enormous difference.’

Further information

A consultation into the draft guidance closes on 12 August.

NICE Consultation on end of life care for children and young people

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