While you are able to talk about your health care wishes, the health care team will continue to talk to you about what is important and decisions you may need to make. If you can’t communicate then it is important that you have a plan for the care you want at the end of life. Planning for the possibility that you may not always be able to talk, means that your wishes can still be heard and respected.
What is advance care planning?
Advance care planning is about discussing or writing down your wishes while you can still say what you want and talk about what is important to you and your future health and personal care. A possible outcome of these discussions is a written Advance Care Plan. This will help your family and friends to make decisions about what to do for you when you no longer can.
When you create a written advance care plan, you also need to tell your health professionals about your plans. If possible, it is helpful to discuss any decisions you make with them when putting the plan together. Involving your close family and friends in the discussion means they will know why you have chosen the decisions that you have made.
As things change what you would want might change. Let your family, friends or health professionals know if you do want to change your plan at any time.
You may choose to appoint a substitute decision-maker. This person is legally allowed to make decisions for you. You do not have to choose a substitute decision-maker but it can make it easier for health professionals to talk with someone you have chosen. This person will know what you would want.
What is an advance directive?
Advance care directives tell the doctors about specific kinds of treatment that you would or would not want no matter how sick you are. It is a legal document and states how the doctors should manage your care.
In an advance care directive, the types of medical treatment that you could describe includes the use of antibiotics, fluids or life support. If you have an advance care plan or advance care directive your wishes are more likely to be taken into account when medical decisions are being made.
A living will is a term that is sometimes used to describe an advance care directive. It includes some of the same information found in an advance care directive but generally refers to the very end of life. This is when decisions need to be made about further treatment for the person who is dying. Certain advance care directives allow you to appoint your own substitute decision-maker. Your substitute decision-maker will be asked to make decisions about the medical treatment you should receive based on what you have written or discussed with them. They should 'stand in your shoes' and make the decisions that you would make when you can’t speak for yourself.
Making an advance care plan or directive
It is important to understand that you can’t be forced to complete these documents. You can tell others what you would want without having to write it down. It is also important for everyone to understand that these documents should only be used if you cannot say what you want.
Any written advance directive or advance care plan needs to be made available to people who need to know. This includes having a copy where it can be seen by ambulance personnel in case of an emergency. A copy should be given to your named substitute decision-makers. It is also a good idea to give a copy to anyone else who is involved. This could include your friends and family members and / or relevant health professionals.
If you are from a different culture it may be helpful to write down how you would like to be cared for at the end of life. Health professionals may not always know about your culture or what traditions you would prefer. It would be helpful if you could explain to them if this could become an issue with other family members, friends or others who might be involved in your care.
Some Tips for making a plan
- Think about the choices that matter to you. It may be planning a holiday or a wedding. You may just want to live as well as possible within the limitations of your illness.
- You might still need to organise or finalise some things. There may be conversations that you need to have or issues you want to resolve.
- When making plans and decisions you need to let people know what you have decided. This includes your family and friends. You should also tell your health professionals.
- Sometimes you do need to make decisions. It may be difficult, or it may seem easier to put it off.
- It is a good idea to think about what is important now. Being informed helps to make preparations and decisions easier. Planning for how to cope as things change is useful.
- It is not easy to be completely clear and rational when you are upset. Making decisions at the end-of-life can be challenging. Some of your medications may also affect your thinking. Take time to talk things through. Consider what is important to you and what would be the right thing to do. Don’t make any rushed decisions. Discuss any issues you may have with family and friends. You could also talk to a health professional or counsellor.
Other relevant arrangements and terms
You do not need to seek professional advice when creating an advance care directive, however many people choose to do so. There are places that you can go to get help. This includes:
- the Public Trustee,
- a community legal centre,
- a solicitor,
- professional nursing organisations,
- professional palliative care organisations,
- seniors information services, and
- others who have had training on advance care planning and advance care directives.
Each state and territory has different laws covering advance care directives. You can find out about relevant state or territory information via links below:
Enduring Power of Attorney
An Enduring Power of Attorney is usually a document about financial decision-making for a person who can’t make their own financial decisions. In some states / territories it may also include medical treatment decision-making. This document enables another person to look after your financial affairs and sometimes healthcare decisions if you can’t do it yourself. The person who is the Enduring Power of Attorney finishes their role at the time of death.
Enduring Power of Guardianship
An Enduring Power of Guardianship is a healthcare and lifestyle document. It allows you to appoint your own guardian if you won’t be able to make healthcare or lifestyle decisions. You can only create this document when you understand the consequences of what you are telling others that you want. This is before you can no longer make your own decisions. This is because an Enduring Guardianship will allow other people to make many decisions for you if you were to lose your mental capacity. It may include where you will live (such as in a nursing home, if needed).
The enduring power of attorney or guardianship documents are important legal documents that allow others to decide on the kinds of medical treatment you will receive. They will also choose your place of care, and other activities that may need to take place when you are not able to make these decisions for yourself. This may sound a bit scary at first. Often when people begin the process of writing an advance care directive or advance care plan, they report feeling better that they have organised their affairs.
Last updated 31 March 2021