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Terminally ill children should be asked about 'life ambitions', experts say

Children and young people with life-limiting illnesses should be asked if they have a wishlist of achievements they want to accomplish, health officials have said.

Medics or care workers developing care plans for youngsters should ask about their "life ambitions and wishes", according to new guidance on end-of-life care for children and young people from the National Institute for Health and Care Excellence (Nice).

It may be appropriate to ask youngsters what they want to do with social media accounts, such as Facebook or Twitter pages, before they die, experts said.

Young people or their families should be asked about what they hope to achieve in life, including ambitions for social activities, relationships and educational attainment, the guideline suggests.

Dying teenagers might want to complete their GCSEs or make specific wishes on who should be given their personal belongings , according to Dr Emily Harrop, who helped to develop the guideline.

The child or a parent, depending on the child's age, should also be asked about life ambitions, she said.

The paediatric palliative care consultant said: "When we start a conversation about end-of-life planning, rather than introduce that with a very closed question or a very negative question, we often start by asking for things like 'What do you hope for? What do you aspire to do for yourself? What would you hope your child to achieve?'

"It is incredible what you get back actually. It's rarely as simple as you'd think.

"It is always very, very individual.

"Some people I counsel are still pregnant but have a baby who has a condition which is life-limiting. One way to deal with the horror of that is to say to the couple 'what do you and your family still hope for?'. It opens up a conversation where you can look to help them achieve what they hope for and look to be able to talk about, or even dispel, that which they fear.

"For the adolescents I care for, a lot of it is about their legacy, what they leave behind.

"It's about what they wish to achieve with the time they have - do they want to do their GCSEs? If they have treasured possessions, are they desperate to know who they are going to leave those to?

"On one level, it opens a conversation you need to have and on the next level, it promotes you to think about them as an individual, not just as a person whose medical or social care you are delivering."

Meanwhile, terminally ill teenagers may want to be asked if they would like social media accounts to be closed down or turned into memorial pages.

The new guidance states that when a child or young person is approaching the end of their life, health or care workers should talk to parents about "what would help them", such as plans for social media content.

Dr Harrop, who works for Helen & Douglas House Hospices in Oxfordshire, said: "Some young people are old enough to have their own social media pages and when someone passes away, there is a mechanism to make 'in mem' (memorial) pages where people can add tributes but the content is limited.

"It was brought up as something that might come into a conversation with parents, or conversations parents have with a young person, to say 'do you have a specific wish of what we do with your Facebook page or Whatsapp? Do you want us to leave something about you on the net because your friends might find that very meaningful or would you like us to take it all down because it is private to you?'"

The new guidance, which aims to improve the end-of-life care for babies, children and young people, suggests that h ospital, hospice and home care staff must look after the whole family, practically and emotionally, when a child is dying.

It is estimated that more than 40,000 children and young people in England are living with a life-limiting condition - where there is no hope of cure.

Professor Mark Baker, director for the centre of guidelines at Nice, said: "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."

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