MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

Talking about end of life and planning ahead

Talking about care at end of life can be hard, but there are ways to make it easier, and feel less worried about what lies ahead.

Planning ahead can help you feel more in control and reduce stress.

You can feel safer in knowing that there are forms of care and support in place to help you and your family.

It is also an opportunity to make your wishes known, have your particular needs met and your wishes respected.

Below you will find information about what you can do to plan ahead, and how it helps. You will also find an introduction on:

  • what to expect with end of life care
  • talking with loved ones
  • services and support available.

We hope that we can introduce you to the process of beginning to think and talk about end of life care, and to help you find other useful resources and tools that are available to help. You may like to read the resources and information here with your carer, family or others close to you.

Read as little or as much of this content as you feel able to. You can stop at any time and return when you feel ready.

You can also speak with your MND Advisor, MND Association, MND clinic or palliative care service, who will be sensitive to having discussions about challenging topics, about any questions or concerns you may have.

Planning ahead involves thinking or talking about end of life with family and friends, and this can be hard, which is completely natural.

You may feel very concerned about what lies ahead and how decisions about your health care, lifestyle and finances will be made. Talking about your future wishes is important as it helps bring some peace of mind to you and your loved ones. It also makes it more likely that you will receive the care you want and have the best quality of life possible.

The main things we suggest you start thinking and talking with loved ones about are:

  • advance care planning – medical care and treatment
  • appointing a substitute decision-maker – health care, lifestyle or finances
  • getting involved with a palliative care service to ensure the right support is there when you need it
  • managing finances and making a Will
  • spiritual and religious plans
  • donating organs or tissue
  • funeral planning and your digital legacy

Needs may change over time so having regular discussions is important to make sure your quality of life is supported.

Planning ahead involves thinking and talking about death and dying, and many people find these kinds of conversations uncomfortable or upsetting. Trusted information can help support you in dealing with what lies ahead, and plays an important role in making sure your wishes are known and respected.

MND Australia’s guide to End of Life Care for people living with MND provides sensitive and practical information. The guide can help when having discussions with carers and loved ones, and provides information on how to access help available.

If you feel ready, we recommend reading through the guide with the support of your carer, family, MND Advisor or a member of your healthcare team to find information that is relevant to you.

The guide has been developed to help make it easier to learn about end of life care and what helps when talking with others about it. The guide is not designed to be read in one go, but rather for you to dip in and out of to find information when needed and when you feel ready.

In the guide, you can learn about:

  • ways to make having difficult conversations easier, such as how to start talking about MND with someone
  • who you’re likely to meet when organising medical care and support
  • how to release tension and work through emotions by having conversations with family and children
  • things you can expect as MND progresses, such as changes to movement, breathing, speech and communication
  • managing grief and bereavement
  • how specialist palliative care services and other professionals can help you with quality of life
  • what happens after death
  • the importance of providing clear details about your wishes
  • genetic counselling and organ and tissue donation
  • choice and control at end of life, and
  • what other people living with MND have said about managing end of life care.

The guide also provides a comprehensive list of services and support available, including those from MND Associations, and from government, community, disability, aged and health care providers.

You can also talk about any aspect of the guide with your MND Association, MND clinic staff, MND Advisor or members of your healthcare team.

Sometimes, you may feel isolated, but there are people available to listen to you and support you.

The network of MND Clinics and MND Associations across Australia are a great source of trustworthy information, advice and support. MND Associations can also help you find other sources of support in your area, including financial, home care, funeral arrangements, managing stress, translation, help for families and bereavement. You’re likely to be referred to people and services who have an understanding of what living with MND is like.

Calling the MND Info Line or contacting your MND association Advisor or Support Coordinator is always a good place to start, and can provide you with sensitive advice and guidance on how to best address your needs.