MND advisors can support and guide you in planning for future needs. To access MND support services in your state, contact the MND Info Line on 1800 777 175.
Planning ahead involves thinking or talking about end of life with family and friends. This can be hard, which is completely natural. You may feel concerned about what lies ahead and how decisions about your health care, lifestyle and finances will be made.
Talking about your future wishes for end-of-life care helps with planning ahead.1 Planning ahead can help you feel more in control of what’s going on. It can bring some peace of mind to you and your loved ones.2 If you plan ahead, you are more likely to receive the care you want and have the best quality of life possible.
The main things to start talking with loved ones about are:
Depending on where you live in Australia, there are different legal documents for planning ahead. The documents vary but they all address how your wishes are met, including those for advance care planning and Power of Attorney.3 It’s important to be aware of differing legislation across Australia. Your state MND Association can help you find the information that best suits your needs.
Some helpful tips include:
Advance care planning involves thinking and talking about the following with your family, friends and health professionals:
Advance care information can then be used to guide other people when you are unable to communicate, or no longer have the ability to make decisions for yourself. These people may include a substitute decision-maker, family member or health professional. For example, you may wish to specify what happens if your main carer is unable to support you for any reason.
In all states and territories, you can record your information in a formal document. Depending on where you live, the document may be referred to as an ‘Advance Care Directive’, ‘Living Will’, ‘Health Direction’ or ‘Advance Health Directive’. You can record your values, life goals and preferred outcomes, or wishes about care and treatments. You can also use the document to appoint a substitute decision-maker.
A substitute decision-maker can make decisions about specific areas of your life, based on your instructions.5 Decisions can range from medical treatments and managing bank accounts to the use of social media, funeral arrangements and guardianship of children. You need to complete certain advanced care documents to make a substitute decision-maker be recognised by law.
Once in place, the substitute decision-making power is usually only initiated when you are unable to make or communicate decisions for yourself. The substitute decision-maker should be involved in any advance care planning you undertake. They should also be someone who will make decisions based on what you would want.
To find out more contact your state MND Association, visit advancecareplanning.org.au or talk to a solicitor.
Managing your financial planning early will help you to better deal with your affairs and the costs of end-of-life care. For example, Medicare covers palliative care costs but there may be additional healthcare costs. These additional costs may or may not be covered by your private health insurance or other government-funded schemes.6
Carers and others supporting you may also be eligible for support. Support may be provided through payments, discounts or subsidies to purchase necessary aids, equipment or services. You may also benefit from speaking with a qualified advisor for managing superannuation, insurance, daily or regular payments and other financial matters.7
A Will is a legal document that sets out clear instructions about what will happen to your money, property and belongings (your estate), when you die.8 If you have children, you can also provide instructions in a Will for their education and wellbeing, as well as appointing their guardian. A simple Will is not usually expensive and could save your family costs in legal fees. Contacting different solicitors and getting a few quotes for legal work may help you reduce costs. A Will also makes managing your affairs much easier for your friends and family. Your state MND Association can advise you, or see below for more information.
Planning ahead involves thinking about relationships and how they may be impacted. Roles often change, which can be hard for everyone to adjust to. If you have a partner, it can help to speak with them about everyday activities they may need to deal with, such as cooking, gardening, and caring for family members or pets.
Your digital legacy refers to any online records you leave in your name.9 You may wish to think about what happens to:
If you would like to donate body tissue or organs for MND research, it is always best to make any arrangements well in advance. You should also involve your family and healthcare team. Speak with your neurologist or state MND Association about donating body tissue.
Palliative care helps people with life-limiting conditions like MND to live as fully as they can for as long as possible. Specialist palliative care services help you and your family deal with end of life. Palliative care may involve the following:
Voluntary Assisted Dying (VAD) is one choice available to eligible people at end of life. Another option is palliative care, which aims to improve quality of life. A person may access palliative care and VAD at the same time.
With VAD, a person in the late stages of advanced disease chooses to end their life with medical assistance. VAD is legally available in New South Wales, Queensland, South Australia, Tasmania, Victoria and Western Australia, with strict eligibility criteria.10 This means people with MND may have access to VAD, should they wish to pursue it.
The eligibility criteria and process for VAD differs slightly from state to state. If you are thinking about VAD, or would like more information, ask your doctor or healthcare team about it. In some states, doctors or healthcare providers may not be legally allowed to start a conversation about VAD, so you may need to raise the topic.
Many people find it distressing to think about death and end of life. If you need to talk with someone, you can contact your state MND Association on the MND Info Line 1800 777 175.