Palliative care offers comfort and support to your child throughout their life.

What is palliative care?

The World Health Organisation defines paediatric palliative care as the active total care of the child’s body, mind, and spirit, and also involves giving support to the family. It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease.1 

Palliative care can ease the symptoms, discomfort, and stress of living with mito for your child and family. It can also:

Palliative care can help children and teenagers living with mito, and is important for children at any age or stage of mito. It can begin as soon as you learn about your child’s diagnosis. 

Palliative care can help prevent symptoms and give relief from much more than physical pain. It can also enhance your child’s quality of life.

Tyler’s mum Abbey-Lee says “Palliative care team changed our lives and if we could give advice to any parent of a child with any form of rare disease/life limiting illness it's don’t be afraid to involve Palliative Care, they have a wealth of knowledge not just for ‘end of life’ but for managing and making life comfortable in the time that you may have."

How can I access paediatric palliative care?

The palliative care process can begin when your child’s health professional refers you to palliative care services. Or, you or your child can ask your health professional for a referral if you feel that palliative care would be helpful for your child, your family, or yourself.

You and your child will likely first meet with your palliative care team in the hospital or at a clinic. After the first visit, some visits may continue in the clinic or hospital. But many palliative care programs offer services at home and in the community. Home services can occur through telephone calls or home visits.

Find a specialist Paediatric Palliative Care service provider. 

Paediatric palliative care assessment

Palliative care for children involves a holistic assessment to determine the needs of both your child and your family.

This assessment is a time to explore your child and your family’s goals, hopes and concerns and usually includes input from a multi-disciplinary team. The primary goal of this assessment is to provide the best possible arrangement for the family.

The assessment may provide an opportunity to discuss:

  • Preferred place/s of care
  • The health needs of your child
  • Education
  • Social activities
  • The emotional, cultural and spiritual needs of your family

Myths about paediatric palliative care

Myth: "Palliative care is end-of-life care"

Fact: Palliative care includes but is not limited to caring for children and families at the end of life.2

Myth: "Palliative care is doing nothing"

Fact: Even when the underlying condition can not be cured, sophisticated medical technology can be used to control symptoms and improve a child's quality of life. Palliative care is a very active approach to symptom management and family support.2

Myth: "Palliative care starts when curative treatment stops"

Fact: Elements of palliative care and curative treatment can be combined.2

This video was funded as part of the Paediatric Palliative Care National Action Plan Project. This project received funding by the Australian Government.

In this video, two mothers express their immediate response upon learning about “paediatric palliative care” for their child’s condition. The video features community member Preeti talking about her experience with her daughter Ziya. Read more about Ziya's story here.  

More information

We encourage you to explore the wealth of information available on the websites of:

Paediatric Palliative Care Australia and New Zealand, along with Palliative Care Australia, work together to share helpful information, tools, and learning materials. These resources have been created for families, caregivers, and young people to improve their understanding and access to specialised palliative care for children in Australia.

Summary

  • Palliative Care is about providing comprehensive care that addresses a child’s physical, mental, and spiritual well-being.
  • Palliative care can help prevent symptoms and enhance your child’s quality of life.
  • Palliative care involves a team of experts who work together to support your child and your family, providing support during transitions between different care settings.
  • Palliative care can start as soon as your child needs it and can take place alongside other treatments for mito.
  • Depending on your medical needs, palliative care may help your child be cared for at home, providing a comfortable and familiar environment for care.

Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.

Author(s): Mito Foundation
Version: 2
Date published: Tuesday 19 December 2023    

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