NICE guidelines will help professionals
An estimated 40,000 children and young people are terminally ill in England. The quality of care they receive varies across the country.
Draft guidance from NICE (National Institute for Health and Care Excellence) outlines what the best palliative care for children looks like.
It emphasises the need for infants, children and young people to be treated as individuals and highlights the importance of children and their families being involved in decisions about care.
Dr Harrop, interim chair of the NICE guideline committee added: “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.”
Play and art as communication
It is key that children are given information in formats they can understand so NICE recommends using music, art and play.
Play is ultimately fun and enjoyable for children.
It offers opportunities for social, emotional and physical development.
Those who study and practice play therapy emphasise that it has a particular importance for children and young people with a life-limiting illness.
They suggest that it offers a chance for the child to have normality and opportunities to express themselves in a creative and independent way.
A therapist described how powerful art and painting can be to help children communicate.
She said one child had painted a colourful scene of themselves with their family outside their home. But when a doctor came to give the child their heart medication, the boy immediately covered the picture in black paint.
He said this was because he did not like swallowing the tablets and that they made him 'feel funny'. The team were able to switch the medication to a liquid and relieved his problems.
Music can have a profound effect on our mood, it can lift our spirits and calm our nerves.
A music therapist will work to build a relationship with the patient so that they can communicate with one another through the medium.
This technique offers people who cannot use words or conventional communication techniques a chance to connect with the world around them.
For those people who can use words, music can be used as a chance to express what they may find too difficult to say.
Views of the child and family are vital
The Parliamentary and Health Service Ombudsman published a report in May 2015, which identified poor communication as a major contributing factor to people receiving poor palliative care in England.
Poor pain management, a delay in referrals and a failure to recognise when the person was in their final days are all highlighted in the report, which calls for people to be able to die with dignity.
Mrs Zoe Picton-Howell is a lay member of the NICE guideline committee, who lost her son Adam in March 2015, when he was 15.
She said: "To me, my husband and our son Adam (when he was alive), 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."
The guidance says that clear communication is essential
All information should be tailored to children and young people. It should be age appropriate, presented in accessible language and any questions raised should be explored through art, music and play.
Therapists might be able to use drawings and pictures to understand where the child would prefer to be cared for.
Home is often assumed to be the place most children would prefer to die.
However, if the child is in pain or is experiencing problems with their breathing, they maybe more comfortable in hospital receiving medical support.
The NICE committee recommend more research be carried out into how we can select the location that best meets the needs of the child and their family.
The guidance highlights the impact of emotional stress and says that this should be managed as carefully as the child’s physical symptoms (such as pain).
Other draft recommendations include devising and routinely updating an ‘advanced care plan’ for the child or young person detailing all treatment choices; ensuring that the child or young person and their parents siblings or carers are aware of the emotional support available to them and how to best manage hydration, nutrition and distressing symptoms in the final days of life.
The consultation for this draft guidance is now open and will run until 12 August 2016. We welcome comments through the NICE website.