Making decisions now around health, lifestyle and estate management planning allows you to have some control over your future when you are unable to do so. To help you make some of those decisions, it is good to speak to those close to you. Sometimes having these conversations can be difficult, however, this is good practice for everybody, not just those impacted by Huntington’s disease.
Making a Will
Creating your will is a final way to help look after your loved ones following your passing. Having a will can reduce stress at an emotional and difficult time for your family.
A will is a legal document that outlines what you would like to happen with your estate and assets and who you would like to receive what.
If you have young children, you should also consider who you would like to become their legal guardian in the event that neither you or the other parent can look after them.
The person who is responsible for ensuring that your wishes are carried out is called the executor of your will. At the time of writing your will, you can nominate who this person is, however it is advisable to speak with them about this prior to nominating them.
Whilst making a will is very important in planning for your future, so is keeping it up-to-date. As your circumstances change, things you have included in your will, or the people you have nominated as a beneficiary may no longer be what you want. Common reasons why someone may choose to update their will may include:
- Marriage, divorce or separation
- Having children
- Additional assets (property etc)
The other consideration is whether you seek legal support to write your will or purchase a will kit. Writing a will can be complicated and therefore if you are considering using a will kit, ensure that it can explain issues and record your wishes adequately. When in doubt, seek legal advice.
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Advanced Care Directives
To make decisions about your health care or medical treatments you need to have what they call ‘capacity’ to make these decisions. Capacity refers to your ability to fully understand any information provided to you, and how making certain choices and decisions could impact on you. Sometimes due to illness, injury or disability, a person may no longer have this capacity to make the best decisions.
Advanced care planning gives you the opportunity to plan for your future health care, for when you are unable to do so or are no longer able to communicate your wishes. Your substitute decision maker (see section below) is required by law to fulfil your wishes of this plan.
An advanced care directive is a legal document. It can either be values-based, meaning that it would record some generalised statements about your preferences and priorities. Whereas instructional directives are more specific to circumstances in which you would consent or refuse to medical treatments.
An example of a values based advanced care directive could include ‘When I am in the late stages of HD, I do not want any treatments that would prolong my life if it does not add to the quality of my life.’
An example of an instructional directive could include ‘In the instance where I can no longer safely swallow food or fluid I refuse the use of a PEG’
Each state and territory have different legislation or requirements for advanced care planning. We would recommend that you find out details specific to your state here.
For further information on advanced care, directives can be found here.
Enduring Power of Attorney (EPOA)
You can also choose to appoint an enduring power of attorney who will make decisions about your living situation or finances when you can no longer do this for yourself. It should be someone that you trust to carry out your wishes and have your best interests in mind and who agrees to accept that responsibility. You can appoint more than one person if you want. If you don’t have someone that you feel you could appoint in this role, another option is to have the Victorian Civil and Administrative Tribunal appoint an independent person from the Office of the Public Advocate to be your decision maker, and engage services like the State Trustees to help manage your finances.
It is important to remember that whilst your EPOA can make decisions about your living arrangements or even your finances, they cannot make decisions about your medical treatment. They need to be appointed separately as your medical treatment decision maker.
Whilst you have the ability to appoint an EPOA, you can also cancel it. You may choose to do this if relationships have changed and you no longer want to have that person in that role.
Medical Treatment Decision Maker
If you have an advance care plan, you can appoint a medical treatment decision maker who will step in to make sure your wishes are followed in the future. It is important that the person you appoint be someone that you trust and who understands your values and wishes, particularly when concerned with the end of life care.