Key points about palliative care for children in NZ
- palliative care means relieving or soothing
- palliative care can be available to tamariki with a chronic illness, or to tamariki with a serious illness who recover, as well as to tamariki who are dying
- palliative care and curative care is available for tamariki and rangatahi (young people) with all kinds of illnesses
- palliative care provides hope and aims for the best quality of life for tamariki and whānau during stressful times
What is palliative care?
Palliative care for tamariki and young rangatahi focuses on comfort and quality of life for the child and support for the whole whānau.
The aim of palliative care is to provide hope and achieve the best quality of life for your child and whānau during stressful times.
Palliative care can be provided to tamariki with serious illness, of all ages, from premature babies to older teens. Palliative care can also be provided to whānau before their baby is born when the baby has been diagnosed with a serious 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 questions they might have
- help you to support the brothers and sisters of your sick child
- provide practical help with equipment, medicine and respite care
- help your whānau to access support in bereavement
Palliative care does not mean giving up
Sometimes it is difficult to know what the outcome of a serious illness might be. Tamariki 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 palliative care. In this way, whānau can 'hope for the best but prepare for everything else'.
Palliative care providers
The community team
Many whānau will want to spend as much time as possible at home. General practitioners, local paediatricians and children's community nurses form an important part of the team caring for your child and can provide support in the community.
The hospital team
The health professionals who may be involved in your child's care include doctors, nurses, social workers, occupational therapists, physiotherapists, mental health professionals, dietitians and others. You can have family meetings with key staff. These can help make sure everyone is clear about the plans for your child's care. These meetings are also an opportunity for you to ask questions.
Specialist palliative care teams
There are different specialist palliative care teams in different regions of Aotearoa New Zealand. Specialist palliative care teams are available to provide advice and work together with the health professionals caring for your child.
Where palliative care can be delivered
Palliative care can be delivered in a number of settings. 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.
Whānau can have support at home from:
- a children's community nursing team
- their GP
- the local paediatric team
- a palliative care service (when needed)
There will always be a bed available in the hospital ward if at any time you feel hospital care is more appropriate. Staff at the hospital can also give guidance and advice about caring for tamariki at home.
Hospital
While most symptoms can be readily controlled at home, some tamariki may need to go to hospital from time to time. Some whānau may feel unable to care for their child at home for various reasons. Hospital staff try, wherever possible, to care for tamariki in a private room and provide a comfortable environment for whānau. Tamariki and whānau have access to the support of all members of the hospital's healthcare team including doctors, nurses, social workers, chaplains and others.
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.
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.
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.
