What is palliative care for children?
You might hear the term ‘palliative care’ used differently by different people. In its most general sense, palliative care is an approach that gives children with a life-threatening or life-limiting condition the best quality of life possible.
It is important to bear in mind that palliative care is not just about looking after children at the end of their lives. It is actually recommended that it starts at diagnosis, or when it is recognised that the child’s condition may be life-limiting. Often, support will be available to the whole family, for as long as they need it.1
Palliative care for children aims to improve quality of life through:
- Controlling pain and other symptoms
- Short breaks, either for individuals or for the whole family
- Support with emotional and spiritual needs
- The support of specialist professionals who have a good understanding of what families and their children are experiencing
- Support from other families or other services
- Care and support if a child reaches the end of their life, and support in bereavement
Does palliative care help the rest of the family?
Palliative care will usually aim to support each member of the family.
An area of the Together for Short Lives website is dedicated to providing information for families about children’s palliative care.
Palliative care comes in a number of forms. It may be:
- An approach taken by staff who know your child best
- Services which make palliative care their focus
- Palliative medicine, which is usually offered by doctors who have carried out further training in palliative care.
What do the terms ‘life-limiting’ and ‘life-threatening’ really mean?
You may hear or read about these terms. The phrase ‘life-threatening’ condition means that treatment is possible, but this treatment may fail.
‘Life-limiting’ or ‘life-shortening’ is used to describe health conditions for which there is no reasonable hope of a cure, and from which a child may die. But it isn’t always easy for professionals to make these judgments with absolute certainty.
Sometimes children’s palliative care may be helpful, but may be withdrawn at a later date if a child stabilises or improves. The complex needs sometimes associated with acquired brain injury means it is considered a condition which may be ‘life-limiting’.
This is because it is a ‘non progressive but irreversible’ condition (one for which there is support available, but no cure). The needs of a child with acquired brain injury may be long-standing and may exist over many years. They may change over time, sometimes for the better and sometimes for the worse.
Children’s palliative care is an approach that can change with a child’s condition. Accepting support which comes under the umbrella of palliative care does not mean a family should give up hope for the future.
Children’s palliative care can support children, young people and families, even when treatment or rehabilitation is also in place.
What does palliative care hope to achieve?
The World Health Organisation has defined ‘adult’ palliative care.3
Here are some of the points it mentions that are also applicable to children.
- To provide relief from pain and other symptoms
- To enable the individual to live as actively as possible
- To look after an individual’s spiritual and social wellbeing
Who can help families?
There are many services (both NHS and charitable) offering palliative care. These can range from nurses and carers offering direct care, or charities who grant children’s wishes.
It may be useful for parents to seek the advice of a professional who knows the child. Family members are usually welcome to call a palliative care service and ask for more information, or perhaps someone can do this on their behalf.
Together for Short Lives is a UK charity that speaks for all children with life-limiting and life-threatening conditions and their families. It has a website for families and it operates a national helpline which takes calls from anyone in the family.
You can call the helpline on 0845 108 2201.Together for Short Lives also has directories of local services.