End of life care for infants, children and young people with life-limiting conditions: planning and management

What is end of life care?

End of life care can mean caring for your child from the time you find out they have a condition that may shorten their life (called a 'life-limiting' condition). You might have found out recently or you may have known for a long time – sometimes people find out even before their child is born.

Having end of life care doesn't always mean your child is going to die soon. Often, it's difficult to say how the condition will affect your child over the course of their life. End of life care is about making sure children and young people have a good quality of life from the time they are diagnosed. It starts early on to allow you to make plans for your child's care, and to reduce stress and uncertainty. It means helping your child to feel as well as possible, while also making plans for dealing with things that might be difficult in the future.