Mitochondrial disease (mito) can impact people of all ages. When we discuss 'you' or 'your' in this resource, we are including your child, family member, or friend living with or impacted by mito.

Summary

  • You have the right to make informed decisions about your health care. This includes asking questions, being part of discussions, and making choices.
  • You can involve others in planning and making decisions about your health care. This includes family, friends, and health professionals.
  • Advocacy means standing up for your rights. Advocates can provide information, listen to concerns, and help resolve problems with services.
  • A Power of Attorney is a legal document letting someone make financial decisions on your behalf. This can be useful if you become too ill to manage your financial affairs.
  • An Enduring Guardian document is a legal document letting someone make lifestyle decisions on your behalf. This can be useful if you become too ill to manage those lifestyle decisions yourself.
  • If someone lacks a valid Power of Attorney or an Enduring Guardian document and loses their ability to make financial or lifestyle decisions, the relevant authority may appoint a guardian.

Your health care rights

You have the freedom to make informed decisions about your health and the care you receive. This includes denying or withdrawing your consent from treatment.

Getting involved in your health care can help you understand your health condition and treatment options. This will assist you in making the best decisions for you.

You have the right to ask questions. You can be part of open and honest discussions. You can make decisions with your health professionals. And you can make your own choices if you are able and want to.

You can also involve other people in planning and making decisions for you. The best outcomes happen when people all work together. This means you, your family and friends, and your health professionals.

Watch this video about your health care rights. The video is made by the Australian Commission on Safety and Quality in Health Care. You can watch it in Auslan sign language if you have a hearing impairment. You can also read about your health care rights here. Or understand your and your carer's rights while in the hospital.

Advocacy

The term 'advocacy' means standing up for your rights. It also means standing up for someone else or for an issue in the broader community. Advocacy often involves groups or organisations, such as the Mito Foundation. They work to fix problems in health care. Advocacy makes sure you are not discriminated against.

Advocates uphold your rights. They help you make decisions that affect you. An advocate can:

  • Provide information about rights and responsibilities
  • Listen to concerns
  • Help resolve problems or complaints with services.

Situations when you may seek an advocate include:

  • Concerns about the quality of a health, aged care or disability service
  • Experience of discrimination
  • Inability to access appropriate services and support.

People with disabilities have a right to advocacy. This right comes from the National Disability Advocacy Program. Visit Ask Izzy to find advocacy providers using your suburb or postcode. Or visit our Be Your Own Advocate or Be Your Child’s Advocate resources. They have more information on self-advocacy.

Doctor and patient sitting together looking at a tablet.

Advance care planning helps you plan for the future

Advance care planning involves planning for your future health care. You can decide now what health care you want or don't want if you get very sick and can't communicate your wishes. Learn more about advanced care planning here.

Palliative care is not the same as end-of-life care

Palliative care helps you live as fully and as comfortably as possible with a life-limiting illness. Palliative care can help prevent symptoms and relieve much more than physical pain. It can also start as soon as you need it, to enhance your quality of life.

Palliative care is for people of any age. It can be provided in your home, a hospital, a hospice or an aged care home. Learn more about palliative care or paediatric palliative care here. Learn more about the difference between palliative care and end-of-life care here

 

 

Understanding end-of-life options

When someone receives a diagnosis of a life-limiting illness or is aging, it can be a confronting, lonely, and confusing time. There is often so much to manage and many choices to make. Knowing what options are available can help with end-of-life planning.

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Useful information

  • Learn more about Evaluating online health information here.
  • Medical ID jewellery communicates your vital health information during emergencies, ensuring immediate access when needed. There are options available for customisable medical ID jewellery in Australia.

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
Reviewer(s): This resource has been kindly reviewed by a solicitor specialised in family law
Version: 2
Date publised: 4 July 2024

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