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Speaking for myself

Decisions about my health

Who can make decisions about my health?

While you have capacity only you can make decisions about your health. By law doctors and other health care professionals must get your consent before any proposed treatment.

If you are not able to give consent (for example, if you are unconscious or have lost your capacity through Alzheimer’s disease), in most cases the doctor must instead get consent from your ‘person responsible’. If you have appointed an enduring guardian he or she will be your ‘person responsible’. Otherwise, your person responsible will be, in order, your current or most recent partner (husband, wife, de facto or same sex partner), a person caring for you, a relative or close friend.

Advance care planning

It’s therefore a good idea to discuss your wishes about future health care with your family and friends (and enduring guardian if you have appointed one). Otherwise, if the time comes that they need to make decisions for you, it may be hard for them to know what you would have wanted. This is called advance care planning.

You can also write your wishes down in an advance care directive.

What is an advance care directive?

An advance care directive (also called an advance care plan or a living will) is a written record of your wishes or instructions for doctors and health care workers about the treatment you want or don’t want in particular circumstances in the future.

An advance care directive is only used in situations when you are unable to communicate or have lost the ability to make medical treatment decisions for yourself.

It is a good idea to talk to your doctor when you make an advance care directive as your doctor can help you understand more about your health conditions and treatment decisions that may need to be made.

How do I write an advance care directive?

Unlike enduring powers of attorney and enduring guardianship appointments, there is no special form that you must use. However, the NSW Department of Health has guidelines on the best way to document an advance care directive. The guidelines recommend that an advance care directive should follow these four principles:

  1. It needs to be specific. It can include your preferences for treatment for a health condition you have now or one you may develop in the future.
  2. It needs to be kept current. Your wishes may change in the future, so it is important to review your advance care directive regularly or if there is a big change in your health. It is a good idea to note on it when you last reviewed it and whether or not you made any changes.
  3. You must be mentally competent. You can only make an advance care directive while you still have the mental capacity to understand the choices you are making.
  4. It is good idea to have it witnessed. You can choose who you ask to witness it.

You can make an advance care directive as part of appointing an enduring guardian. You can attach your advance care directive to your Appointment of Enduring Guardian form and refer to the attachment in the form itself.

The Appointment of Enduring Guardian form will need to be witnessed by a solicitor, barrister, registrar of the Local Court, an employee of the NSW Trustee and Guardian or a qualified overseas lawyer.

Do doctors then have to follow my wishes?

Yes. Although there is no special legislation in NSW that deals with advance care directives, the NSW Health Department’s guidelines to doctors make it clear that if an advance care directive meets the four principles set out above, doctors are legally bound to follow it.

For example, you may say in your advance care directive that if you are unable to communicate with or recognise your family and there is no possibility that you will ever improve or recover, you do not want CPR (Cardio Pulmonary Resuscitation) if your heart stops, but you only want to be kept comfortable and free from pain.

However, you cannot use your advance care directive to demand treatment that your doctors think would be futile (for example, a heart transplant). Nor can you ask someone to actively and deliberately end your life. That would be euthanasia, which is illegal in all Australian states and territories, and has nothing to do with advance care directives.

Does everyone need an advance care directive?

No. It is up to you. Everyone is different and you may prefer to leave such decisions to your partner, a person caring for you, or a relative or close friend who knows you well and you trust to make decisions for you. Even just talking over what you would want will at least help them to know what you would have wanted if they ever have to make such decisions for you. This is called advance care planning.

Is there a special form to make an advance care directive?

No. There is no special form that you must use. You can write your advance care directive as an open letter or you can attach it to, or incorporate it into, your Appointment of Enduring Guardian form. There is also a useful form on the Advance Care Planning Australia website.

What is important is that however you write it, your advance care directive should meet the four principles set out above.

It is a good idea to give a copy of your advance care directive to your ‘person responsible’, that is, the person most likely to be asked to give consent to medical treatment on your behalf. This will ensure the person knows your wishes and can act on them.

It is also a good idea to give a copy to your regular doctor (GP) so that they know your wishes as well. If you have already been treated at a particular hospital you could also ask your doctor to send your advance care directive to the hospital with a request that it be placed in your medical record.

Case study: Elsie

American-born Elsie had been living in Sydney for over 30 years. She had never married or had children. She had no family in Australia but she had some special friends. She had been a music teacher all her life, and soon after she retired she found out she had terminal cancer.

Elsie talked to her doctor and her friends and told them that she wanted to enjoy her music and time with her friends as long as possible. However, if the time came when she couldn’t communicate with her friends and showed no pleasure in listening to music, she did not want her life prolonged in any way. She wrote in her advance care directive that, if that time came, she only wanted to be kept as comfortable and free from pain as possible.