Your rights at the end of life

You have the right to be treated with dignity and respect during your medical treatment and care. If you are terminally ill, your privacy and dignity must be respected, and you have the right to receive good quality care and have your decisions acted upon. Both you and your family should be treated with empathy and compassion.

You also have the right to refuse treatment. You must be at least 18 years old and have the mental capacity to make that decision. If you do not have that capacity, then a person with the relevant legal authority can make that decision for you.It is important for the family members of someone who is facing the end of their life to respect their wishes and follow through with the requests of their loved one as much as is practical and possible.

Your right to make choices

As a patient, you have the right to make choices about your medical treatment and put legal agreements into place to ensure that your wishes are followed.

Medical and legal powers of attorney

You can appoint a person to be your medical treatment decision maker by completing a legal document.

This gives a person of your choosing the power to make medical decisions on your behalf when you are unable to do so (for example, if you are unconscious due to an accident or long-term illness).

This appointment is only activated if you lose the capacity to make decisions. Once activated, your medical treatment decision maker has a responsibility to do their best to make the same decisions you would make, if you were able. This may include things like refusing life support or rejecting medical treatment that they reasonably believe you would consider unnecessary.

If you want to appoint a medical treatment decision maker, it’s a good idea to consider appointing someone you trust and who has your best interests at heart.
You need to be comfortable that they will make the same choices as you.

The person you appoint must have a clear understanding of your views on medical treatment and be able to carry them out for you. This is very important if there comes a situation where they may have to refuse medical treatment that may prolong your life unnecessarily.

You can also appoint multiple medical treatment decision makers as a back-up in the event your first appointee is not able to do the role (for example, a temporary or permanent illness).

Consult with your family

It is a good idea to discuss your decision to appoint a medical treatment decision maker with your family. Your family needs to know that the person you appoint has the power to make decisions about your medical treatment which may conflict with their own wishes.

For more information on making an appointment see the section on appointing a medical treatment decision maker.

Your choices for medical treatment and beyond – have a plan

While you may have a medical treatment decision maker, in case you cannot make decisions yourself, it is important that everyone you are close to is aware of your wishes. This includes both the health professionals who are treating you and your family and friends. By putting an advance care directive together, you can document the level of healthcare and quality of life you would want if you are unable to make decisions for yourself due to your illness or medical condition.

In an advance care directive you can record general statements about your values and preferences to guide your future medical care. You can also document specific instructions if you wish to refuse or consent to a particular treatment. An advance care directive can help your family and those close to you make medical treatment decisions on your behalf, giving you greater confidence that your medical treatment decisions will be respected.

There is more information on recording wishes for future care and related matters in the section on advance care planning.

It is also a good idea to talk with your family and friends about your wishes to make them clear. You are entitled to change your plans as often as you need and it is important to discuss with those close to you how your wishes may change over time.

There may also be other wishes you have when you die, such as being dressed in certain clothes, having a certain bedspread on your bed or having specific people with you. You may not have written this down, but you want people to know about your wishes and you want them respected and acted upon.

It is also important for family members to respect the wishes of their loved one who is terminally ill. This may be emotionally hard, especially if they want to die at home.

Plan your funeral in advance

As well as discussing and writing down your wishes for future care, take the time to think about how you wish to be treated after you die. This will help the person you choose to make those decisions on your behalf feel more comfortable about making those choices.These are some of many things to consider:

• At your funeral, do you want an open or closed coffin?
• Do you want to be dressed in something special for you funeral?
• Do you want to be buried or cremated?
• If buried, where do you wish to be buried?
• If buried in a cemetery, do you want a headstone or a plaque?
• If cremated do you want to have your ashes interred at a cemetery or do you want them given to your family in an urn to be scattered somewhere special to you?

The Australian Funeral Director’s Association provides information about how you can simplify these types of decisions for your family. You can document your wishes in an ‘Advance funeral wishes’ document. Most funeral directors can help you to pre-arrange your funeral.

As an alternative, you can prepay your funeral. The benefits of doing this are many. By prepaying for your funeral, you get to decide:

• the type and style of funeral service you want
• how your body is prepared and the viewing arrangements (if you want them)
• whether you have a burial or are cremated
• the specific cemetery or crematorium you want to use
• the type of coffin you want
• whether you want a minister of religion or civil celebrant to oversee the service
• if you want to choose a memorial book or memorial cards
• what you want in your death and funeral notices
• whether you want flowers or to ask for donations to a charity of your choice
• the type of mourning vehicle
• specific poems or bible passages to be read or pieces of music to be played.

Making a will

If you discover you are terminally ill, it is important that you either make a will or, if you already have one, update it to make sure it is current and includes all the assets and property you wish to leave to your family, friends, charities and other organisations.

When drawing up your will, it is a good idea to consult a solicitor, the State Trustees or a trustee company to make sure that it is drafted correctly and is very clear and precise. This will ensure that your property is allocated the way you desire. An ambiguous will can lead to family fights and property division in ways that you did not intend.

If you do not have a will then your property will be distributed to your nearest next of kin as stipulated by the Administration and Probate Act 1958.

For more information see Victoria Legal Aid – Wills and estates.

Where to get help

• Palliative Care Advice Service
• Your GP (doctor)
• Office of the Public Advocate, Tel. 1300 309 337
• Victoria Legal Aid, Tel. 1300 792 387
• Victorian Civil and Administrative Tribunal Guardians – Administrators, Tel. (03) 9628 9911, 1300 079 413 (country callers only)