Key points about palliative care for children
- palliative care can be available to pēpi, tamariki and rangatahi with a chronic or serious illness
- starting palliative care early in your child’s illness makes sure your child has the best possible quality of life throughout their illness
What is palliative care?
Palliative care for your child focuses on their comfort and quality of life and support for your whānau.
Palliative care supports:
- taha tinana (physical symptoms)
- taha wairua (spiritual health)
- taha hinengaro (mental health)
- taha whānau (family health)
The aim of palliative care is to provide hope and achieve the best quality of life for your child and whānau.
Who can access palliative care?
Palliative care is available to tamariki with serious illness, of all ages, from premature pēpi to rangatahi. Palliative care is also available to whānau before their baby is born when the baby has been diagnosed with a serious illness.
When children can receive palliative care
Your child can receive palliative care early on in their journey and this can continue for years, if needed.
Starting palliative care early in your child’s illness makes sure your child has the best possible quality of life throughout their illness.
Early support helps:
- manage symptoms sooner
- reduces stress for whānau
- strengthens decision making
- makes sure your child receives the best possible quality of life throughout their illness
Goals of palliative care
The goal of those working with you, your child and 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 to them, and that they enjoy (such as going to school or kindergarten)
- help your whānau with difficult decisions
- support you as the parents or caregivers
- help you to support your child around any worries or question they might have
- help you to support your child’s siblings
- provide practical help with equipment, medicine and respite care
- help support the cultural needs of your child and whānau
- help your whānau to access support in bereavement
Palliative care does not mean giving up
Palliative care does not mean giving up. It can continue if the illness stabilises and your child improves. But, sometimes it can be difficult to know what the outcome might be, and in some cases a child may die. Your healthcare team can support you and your child in all stages of your child’s palliative care journey.
Who provides palliative care?
The community team
Many whānau will want to spend as much time as possible at home. Community healthcare professionals are an important part of your child’s team caring for your child in the community.
The hospital team
The hospital-based healthcare team can help make sure everyone is clear about the plans for your child's care.
Specialist palliative care teams
There are specialist paediatric palliative care teams in some regions of Aotearoa. They can provide advice and work together with your local healthcare team.
Where children can receive palliative care
These are the main options available in Aotearoa New Zealand.
Home
Many whānau wish to care for their tamariki at home because they feel secure there. Tamariki can better control their daily routine at home.
Being at home also increases the opportunity for a child's parents, siblings, friends and whānau to help with their care.
Your healthcare team will provide support to make you feel safe at home.
Hospital
Tamariki and whānau can access hospital support when needed.
More information and resources
Skylight provides a national support service for New Zealand children and young people who are experiencing change, loss and grief - whatever its cause. Skylight also supports those caring for these children and young people - their families, whānau, friends, professionals and community volunteers. Call free on 0800 299 100
The Starship website provides information about the specialist palliative care team who are available to provide advice.
Rei Kōtuku provides specialised paediatric palliative and bereavement care to pēpi, tamariki, rangatahi and their whānau in the central region of Aotearoa New Zealand.
True Colours supports children with a serious health condition and their families. Staff at True Colours provide support to your child and family through the difficulties and grief of a chronic, life-limiting or life-threatening illness.
Rainbow Place is a specialist children's and young person's hospice in the Waikato.
Nurse Maude provides a range of specialist hospice palliative care services for children (and adults) living in Canterbury.
Kenzie's Gift is a New Zealand organisation which aims to improve the emotional wellbeing and mental health of children, young people and their families affected by serious illness or bereavement.
Sands is a voluntary, parent-run, non-profit organisation set up to support parents and families who have experienced the death of a baby at any stage during pregnancy, as a baby or infant.
Acknowledgements
The content on this page has been developed and approved by the New Zealand Paediatric Palliative Care Clinical Network, Paediatric Society of New Zealand.
