Key points to remember about palliative care
- palliative care is the care provided to children with life-limiting or life-threatening illnesses, and their families/whānau
- it focuses on comfort and quality of life and support for the child and their family/whānau
What is palliative care?
Palliative care for children and young people with life-limiting conditions focuses on comfort and quality of life for the child and support for the whole family.
The term "palliative care" is used to describe the care and support that is provided to children in the following four groups:
Children with life-threatening conditions ...
... for which curative treatment may be possible but may fail. Palliative care may be necessary during periods when prognosis is uncertain and when treatment fails. Children who have had successful curative treatment or who are in long-term remission are not included.
Children with conditions ...
... where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities but where death could still occur.
Children with progressive conditions ...
... without the possibility of a cure. Palliative care in these children may be for many years.
Children with conditions not usually considered progressive ...
... but which may cause weakness and make children more likely to get complications. These children may deteriorate unpredictably.
The aim of palliative care is to achieve quality of life for your child until they die, whenever that may be, preferably in a place of your child's and family's/whānau's choosing.
What is the goal of palliative care?
The goal of those working with you, your child and family/whānau is to:
- help your child to be comfortable and in the best possible condition so that they can go about doing things that are important and fun (such as going to school or kindergarten)
- help your family/whānau with difficult decisions
- support you as the parents or caregivers
- help you to support your child around any worries or questions they might have
- help you to support the brothers and sisters of your sick child
- provide practical help with equipment, medications and respite care
- help your family/whānau to access support in bereavement
Does having palliative care mean giving up?
No. Sometimes it is difficult to know what the outcome of a serious illness might be. Children and parents may find themselves in the difficult position of having to decide whether or not to pursue treatments that offer a small chance of a cure. It is possible to go ahead with such treatments and still receive elements of palliative care. In this way, families/whānau can "hope for the best but prepare for the worst".
ACT - The Association for Children's Palliative Care. UK.
Service Improvement Network Project. UK. 2012. Child and Family Wishes Document.
The Royal Children’s Hospital (Melbourne) Kids Health Info for Parents.
© Paediatric Society of New Zealand and Starship Foundation 2005 – 2013
Printed on 07 December 2013. Content is regularly updated so please refer to www.kidshealth.org.nz for the most up-to-date version