Advance care plans

Advance care planning helps the people close to you understand what matters to you about the healthcare and quality of life you would want if, for some reason, you cannot take part in the discussions yourself. Talking about and writing down your wishes also helps the person you choose to make decisions on your behalf feel more comfortable about those decisions.

To make sure your wishes are known if you become unwell and unable to make your own decisions, it helps to take a few steps:

• think about your wishes for future care
• have the conversation with those close to you
• consider appointing someone to be your substitute decision-maker
• write your wishes down in an advance care directive
• share your advance care directive with others
• review it regularly, or whenever your situation changes

The exact forms, terms and legal requirements vary from country to country, so check what applies where you live.

Think about your wishes for future care#

There are several things to consider about your medical treatment and the care you would want. Think about what might happen if you could not make decisions about your care for some reason. Do you have views or preferences you would want others to know?

Consider who, among the people close to you, you would trust to make decisions about the healthcare you receive and your quality of life, and what you would want them to keep in mind on your behalf.

Have the conversation#

To make sure the things that matter to you are known if decisions need to be made for you, talk to those close to you, including your family, and to your doctor and treating team.

Some useful questions to consider and discuss are:

• If you have a condition, what do you understand about it?
• What are your fears about what is to come?
• What would you like to do as time runs short?
• How important is it to you to have more time?
• How important to you are things such as independence and dignity, and which matters most?
• If it is not possible to achieve all of these, what trade-offs are you willing to make?

These are emotional questions that can be hard to discuss. Talking openly about your goals, what is important to you, and how you would want pain and suffering managed can help guide future care.

Appointing a substitute decision-maker#

A substitute decision-maker can make medical decisions on your behalf if you are unable to take part in decision-making. Consider choosing someone who:

• clearly understands your wishes and whom you trust to follow them and act in your best interests
• is close to you and can be a strong advocate for you
• is an adult and is willing to take on the role
• is not a healthcare practitioner responsible for your care, and is not your paid carer

In most places you will need to complete a form to appoint your substitute decision-maker and sign it in front of witnesses. The person you appoint usually cannot be one of those witnesses. Check the specific requirements that apply where you live.

Writing an advance care directive#

An advance care directive lets you record your wishes for future medical care. Where they are legally recognised, such documents must be taken into account by health practitioners and by your substitute decision-maker.

An advance care directive can include two kinds of statements:

• A values statement, where you record general statements about your priorities and preferences to help guide your future care. Include anything that is important to you or that worries you, such as where you would like to be cared for at the end of your life. For example: “If I am unable to recognise my family and friends and cannot communicate, I do not want medical treatment to prolong my life,” or “If I am dying, I would like to be in a comfortable environment surrounded by family and friends.”
• An instructional statement, where you set out the circumstances in which you would or would not want specific medical treatments. For example, a statement consenting to a particular operation in specified circumstances, or a statement refusing cardiopulmonary resuscitation (CPR) in any circumstance.

It helps to talk to your doctor and treating team while writing down your wishes. This gives them and your substitute decision-maker greater confidence that they are making the right decision for you if you are too unwell to decide yourself.

There may be no set form for an advance care directive. It can be a letter you write or a form provided to you, as long as it meets any formal requirements that apply where you live. Even if you do not complete a formal directive, anything you write down about your wishes will still give your substitute decision-maker useful guidance.

Sharing your directive#

Keep the original copy of your advance care directive and any decision-maker appointment form in a safe place. To make sure they are found and acted on, give a copy to:

• your substitute decision-maker
• your family
• your doctor
• the hospital you use most regularly – ask for an alert to be added to your medical record

If a secure electronic health record is available to you, uploading your documents there can make them easier for others to find.

Reviewing your directive#

You can review and change your advance care directive at any time. You may want to review it when your circumstances change, for example if:

• you or your family are asking about palliative care
• you have been hospitalised for a severe or ongoing illness
• your condition has changed or your health has become unstable
• you decide you want to refuse life-sustaining treatment

If you make any changes, discuss them with your substitute decision-maker, your family, your doctor and other relevant healthcare professionals. Give an updated copy to everyone who received the original so they are aware of the changes.

Key points#

• Consider appointing someone to be your substitute decision-maker.
• There are certain things to consider about your medical treatment and the care you would want.
• You will usually need to complete a form to appoint your substitute decision-maker and sign it in front of witnesses.
• Your substitute decision-maker usually cannot be one of the witnesses.
• Include anything that is important to you or that you are worried about.

Where to get help#