Medics told never to 'assume' orders not to resuscitate patients are in place
Health professionals caring for terminally ill children must never "assume" there is a "do not resuscitate" order in place, a watchdog has said.
The National Institute for Health and Care Excellence (Nice) said that while an advance care plan should be made, carers should not "confuse" it with a "do not resuscitate plan".
The draft guidance says health workers must discuss the needs of children in their final days with families, including whether continuing with food and water is always in the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.
It adds: " Never assume that there is a do not resuscitate 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 youngsters 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.
Young people and their families should also be asked if there are other people important to them - such as friends, boyfriends or girlfriends or teachers - who they would like to be involved in decisions about their care.
Parents or carers should also be consulted about what they think their child should be told about their condition, and any information should be conveyed in a " sensitive, honest and realistic" way.
Figures suggest more than 40,000 children and young people in England are living with an illness where there is no reasonable hope of cure.
Dr Emily Harrop, consultant in paediatric palliative care at Helen and Douglas House hospice in Oxford, and interim chairwoman of the Nice guideline committee, 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.
"This draft guideline 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 further embed the good practice in palliative care for which the UK is already renowned."
Professor Mark Baker, director for the centre of clinical practice at Nice, said: "We know that palliative care varies across the country and understand that children, young people and their family members may have different ideas of what good care looks like.
"With this in mind, Nice has made a special effort to speak directly to young people with life-limiting illness and their families who are supporting them. Their voices and experience will help us all to provide the very best medical and emotional support possible."
Zoe Picton-Howell, who lost her 15-year-old son Adam in March 2015, worked on the guidance. She said: "To me, my husband and our son Adam, the most helpful thing was to have healthcare professionals who took the time to listen to Adam.
"When we worked together, Adam got the best care possible, but if a member of the team thought they knew best and became uninterested in what Adam wanted, his care tended to be bad."