Palliative Care

"I was a young girl preparing the real possibility of dying. I wanted to still have the opportunity to live life"
AYA patient

Printable Resources

Support Directory

For a full list of NZ hospices | www.hospice.org.nz

National Paediatric palliative care service https://starship.org.nz/health-professionals/paediatric-palliative-care/

Sky light offers both individual and family counselling for children, young people, family/whānau and friends who are experiencing grief, loss and Trauma |https://www.skylight.org.nz/get-support/counselling

Make a Wish NZ grants wishes and experiences for children and young people with life threatening conditions up to 18 years of age. www.makeawish.org.nz/

Guidelines/ Research

Web Resources

Skylight skylight.org.nz/

Together for short lives (UK) togetherforshortlives.org.uk/

Paediatric Palliative Care (Australia) Links to resources for professionals, caregivers and teachers https://paediatricpalliativecare.org.au/

Te Hokinga a Wairua | Website for individuals, partners or whānau of an adult (including AYAs) at the end of their life. Contains practical information about what to do after a bereavement | https://endoflife.services.govt.nz/welcome

Knowledge Hub | For resources including online training and development in working with adults (including young adults) | https://knowledgehub.hospice.org.nz/ 

Paediatric Clinical Care Network in NZ | The Paediatric Palliative Care Clinical Network leads and provides clinical oversight of the implementation of the Guidance for Integrated Paediatric Palliative Care Services in New Zealand.  It provides advice on service and treatment issues to the Paediatric Society of New Zealand and Ministry of Health through the Palliative Care Advisory Group |  https://starship.org.nz/health-professionals/paediatric-palliative-care-clinical-network/

Tools

Tools developed in Aotearoa/ New Zealand

Starship Child Health Advance Care Plan | Te Wa Aroha/Allow Natural Death

My advance care plan & guide | Plan the healthcare you want in the future and for the end of your life

My advance care plan & guide | Advanced Care Plan Guide 2016

Te Ara Whakapiri Toolkit | Care in the last days of life

CDHB Child health end of life care plan

ACP Waka Booklet Part 1

ACP Waka Booklet Part 2 – Fill out

Resources developed by Palliative Care Australia

An overview to Family Meetings and Difficult Conversations

Supporting students at school after a death – A resource for teachers 

A resource for friends and family of someone caring for a serious ill child

A Booklet for parents to help with discussions with the Palliative Care Team about your child | Here for you

Other

Voicing my choices | Example of booklet used for young people who are palliative

Voicing my choices | You can order for a small fee here

Together for Short Lives | End of Life Planning Prompt Sheet 

Together for Short Lives | Caring for a child at end of life