Making a difficult time easier with the MND Decision Tools

Published: September 2019

Talking about life with motor neurone disease (MND) can be hard.

For many people, eating, breathing, walking and other activities -  that were once so normal and easy to do - change, and become a challenge.

Simply asking for advice about how to deal with the reality of living with MND can feel upsetting, and overwhelming.

When it comes to discussing the options for future care, or how to look after family and friends, the whole experience can seem daunting – even though it could improve quality of life.

Even so, no-one has to make tough decisions about MND without help.

Recently, Australian researchers created the MND Patient Decision Support Tools, a collection of online information modules about assisted ventilation, gastrostomy, genetic testing and similar options for care. The tools assist people living with MND to make discussions about how they’d like to deal with the disease.

Featuring easy-to-use prompts, and information based on the best evidence available, the tools can help make it easier to make decisions about MND care – especially when it feels difficult to make a choice in challenging situations.

What are the MND Decision Tools?

Currently, there are three MND Decision Tool modules: gastrostomy, assisted ventilation and predictive genetic testing.

The tools are an interactive resource. Users can click on sections relevant to their interests that expand to provide more information, answer questions to help determine what is most useful, test their knowledge, provide feedback and find links to more information.

Unlike fact sheets, the tools encourage a person living with MND to become involved in a decision-making process, and help make informed choices.

Who developed the tools?

The development of the tools was led by Dr Anne Hogden, from the University Tasmania and Macquarie Univesrity, in collaboration with a panel of people with MND, their family members, health professionals, MND association representatives and researchers.

The tools were shaped and refined by people living with MND, based on their thoughts, feelings and experiences using the tools.

The development of the tools was funded in part by Motor Neurone Disease Research Institute Australia (MNDRIA).

How are the tools used?

Most decisions about MND require consultation with one or more health professionals.

The tools can be used during health care appointments, or by people living with MND, family members or others close to them to gather information before speaking with a health professional.

The tools can also be used at a time when a person living with MND feels ready to learn more about options for care available to them.

People living with MND can use the tool to find information most relevant to them, weigh up the advantages and disadvantages of options for care, such as the use of equipment to support breathing, to guide their decisions.

Some basics on using the tools

The tool has many advantages over traditional forms of information because it’s interactive – a person living with MND can search for information about care that meets their personal needs and interests, and make a decision when they feel informed and ready.

Given the interactive nature of the tool, its best used when it’s:

• easy to find on a home pc or mobile phone, e.g. bookmarked on an up-to-date internet browser
• easy-to-read on a display or screen that considers potential issues with eyesight and/or mouse and keyboard use
• completed before healthcare appointments, if people living with MND, family or others want to be as informed as possible before speaking with a health professional.

The tools will be updated regularly with the latest evidence to make them current and reliable. More tools will be added based on the advice of health professionals and people living with MND.

Learn more

Other resources to support decision-making surrounding MND:

MND Australia: Planning Ahead

Support from state MND Associations