Advance Care Planning

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Advance Care Planning is planning ahead, while you are able, in case there is ever a time when you are too ill, or not able, perhaps due to an accident, to make your own medical treatment decisions.

It is asking and answering:

1. Who would make decisions for you?

and

2. Would they know what you would want?

To contact the Advance Care Planning Program at Northern Health

9495 3235 or 9495 3140
acp@nh.org.au
Click here to refer to the Advance Care Planning Program
Interpreter Service: Please call 131 450 (free service)

Click on boxes below for information

Who can make medical treatment decisions: Identifying your Medical Treatment Decision Maker

If you are able, you should make your own decisions about your medical treatment. You may need some support to do this. Many people are supported by family or friends. You can also appoint a Support Person

In Victoria, the person who can make decisions for you is called a Medical Treatment Decision Maker. They can only make decisions if you are unable to do so. If you temporarily lose ability to make decisions and then recover, the role of the Medical Treatment Decision Maker ceases when you recover.

Who is the Medical Treatment Decision Maker (MTDM)

Your Medical Treatment Decision is the first person on this list, who is available, willing, and able to make medical treatment decisions.

1. Someone appointed by you to be your MTDM;
2. Someone appointed by VCAT (Victorian Civil & Administrative Tribunal) to be your MTDM;
3. The first of the following**, who is in a close & continuing relationship with you:
   1. Spouse or Domestic Partner
   2. Carer (not paid carer)
   3. Adult child
   4. Parent
   5. Adult brother or sister

** Where there are two or more in the same position (eg you have three children), it is the oldest who is the MTDM.

The MTDM must stand in your shoes to make the decision that they believe you would, if able:

• They should consent to treatment you would consent to
• They should refuse treatment you would refuse

Advance Care Directives

The Victorian Advance Care Directive form, comes from legislation. The one Advance Care Directive form contains two parts:

1. Values Directive: This is information about your preferences and values, and what gives your life meaning. It is largely intended to be used by the Medical Treatment Decision Maker (MTDM) at a time when all the details of your latest illness are known.
1. They should consent to treatment they believe you would consent to;
2. They should refuse treatment they believe you would refuse.
2. Instructional Directive: This is an instruction to your Health Practitioner giving in-advance consent to, or refusal of, specific treatments. The Health Practitioner, including doctors, nurses, physiotherapists, Chinese herbalists, chiropractors, ambulance paramedics, or any other health practitioners registered with the Health Practitioner Board must follow a valid Instructional Directive, if it applies to the current situation.

These Health Practitioners must also enquire if you have an Advance Care Directive or have appointed a Medical Treatment Decision Maker. The best time to enquire is when you are not seriously ill, which is why you will be asked about this, even if still able to make your own decisions.

A good reason to write an Advance Care Directive is to help your Medical Treatment Decision Maker and family remember what you have said would be important for you.

Signing and Witnessing

Once completed, you need to sign your Advance Care Directive in the presence of two witnesses:

1. A medical practitioner;

and

2. One other adult witness (not your appointed Medical Treatment Decision Maker)

Where to keep your documents

You should keep your original document in a safe place, and give copies to your:

• Medical Treatment Decision Maker
• Close family
• Health practitioners – General Practitioner, Specialists, Nursing Service etc
• Hospitals or Health Services that you attend.
• If you are likely to need an ambulance in the near future, keep a copy with your medications, and the paramedics will find it.
• You can also upload a copy to MyHealth Record.

Advance Care Directives should be reviewed and updated with a new document if your health or circumstances change, and the earlier document is no longer what you want to com

What are the benefits of Advance Care Planning?

Advance Care Planning is not compulsory, but it has benefits.

The first benefit is it can ensure that, if someone needs to make decisions on your behalf, then it is a person you trust to make the decisions that you would want. (Not the decisions that they would want)

Many people will be doing Advance Care without knowing it has this name. We often talk to our family about what makes life worth living, and situations in which we would not want to keep living.

However, Advance Care Planning is not just about life and death decisions. A good example that you may have heard about is that some people will have a religious belief against receiving a blood transfusion. If they are having surgery, they will want the surgeon to keep them well using means other than a blood transfusion. If the worst happened, and the only way to survive was a blood transfusion, they would not want this.

The law supports them in this and says that the doctors must not give a blood transfusion when the patient has refused.

Other people will have a view that life is sacred, and they want any treatment that can save their life – they may prefer to live even if they can’t move around or think for themselves.

Most people will have a middle position that says, “I want to stay alive and well but there has to be some limits”. There are points at which I would say, “Stop treating me and let nature take its course”.

We assume that our family will automatically know what we would want – but they don’t always. Talking to them is a good start to help them know what is important to you.

Making decisions for another person can be very stressful. People worry about making the ‘right decision’ when they haven’t spoken to the person. A common reason people do Advance Care Planning is to help their children – so that if their children have to make decisions, the children can feel confident about what Mum or Dad would want.

In the past, medicine was less complex, and the medical decisions were less complex and clearer to those making decisions. Now, there can be very difficult decisions to make and sometimes these will need to be make in a hurry. Sometimes, there will be no time to speak with the Medical Treatment Decision Maker or family. In this situation, doctors will treat, unless they know you don’t want that treatment.

Most of the information contained in these pages is equally relevant to patients/ consumers, family members, and health professionals. A small amount of additional information is provided specifically for those working in Residential Aged Care Facilities or for Health Professionals, including General Practitioners.

ACP brochures in other languages

Who will help make medical decisions for you? (click on links below to download)

• English
• Aboriginal & Torres Strait Islander
• Arabic العربية
• Chinese 中文
• Farsi Persian فارسی
• Greek Ελληνικά
• Hindi हिंदी
• Italian Italiano
• Macedonian Македонски
• Nepali नेपाली
• Punjabi ਪੰਜਾਬੀ
• Serbian Cyrillic српски
• Serbian Latin srpski
• Turkish Türkçe
• Vietnamese Tiếng Việt

The role of the Support Person

Many of us will bring a family member or friend to a medical appointment. They will be able to hear and help us remember what was said. They may be someone we talk to about treatment options – someone to help us think through what we might choose to do.

In Victoria, it is also possible to formally appoint someone as your Support Person, by completing a form. The Support Person has no power to make decisions for you. Their role is to help you make your own decisions. They can do this by:

• Attending appointments with you to hear what the doctor or other health practitioner tells you.
• Helping explain how you prefer to receive health information eg drawings and not just words.
• Helping you to think through the pros and cons of what you have been told – but not telling you what to do.
• Helping access information. Your appointed Support Person is able to access the same information that you can access eg your pathology results.

NOTE: If you lose the ability to make your own decisions, the Support Person does not step into the role making decisions for you as the Medical Treatment Decision Maker – unless they are also your Medical Treatment Decision Maker. The Support Person can help your Medical Treatment Decision Maker know what is important to you.

ACP Forms

A comprehensive list of Advance Care Planning forms is available from the Victorian Department of Health

Advance care planning forms – Health.vic

Commonly used forms can be downloaded here:

• Appointment of medical treatment decision maker form
• Appointment of medical treatment decision maker form (long)
• Advance care directive for adults
• Advance care directive for young people under 18 years of age
• Appointment of support person form

Some people might wish to complete an Enduring Power of Attorney.

This form is not for healthcare. Completing the form may require legal advice and assistance. More information is available from the Victorian Office of the Public Advocate Victoria.

Making an enduring power of attorney – Office of the Public Advocate

Download: Take Control Booklet

Making Medical Decisions

Decisions for yourself

When making medical decisions for yourself, there are two main steps. The first is to find out as much as you can about your health condition, what investigations or treatments are proposed, and the potential benefits and risks of each. This includes understanding what would happen if you did nothing.

Having obtained this information, you then need to consider what all the options would mean for you, taking into consideration what is most important to you.

The health practitioners generally have the most knowledge about the healthcare and what would be suitable for your condition. You have the most knowledge about yourself and what you value.

Bringing these two sets of knowledge together, enables you to make the decision that would be best for you, and that you would be willing to consent to. Someone else may choose differently if they value different things to what you do.

Decisions for a person who lacks capacity

If you lack the ability (capacity) to make medical decisions for yourself, then someone else will need to this – your Medical Treatment Decision Maker (MTDM) You would want that person to make the best decisions that they can for you – decisions that would be similar to the ones you would make, if you were able.

Like you, the MTDM also needs to find out as much as they can about what makes you unwell, and what investigations and possible treatments might be suitable. This means understanding the potential benefits and risks of each option, including doing nothing.

The job of your MTDM is not to make the decision that they would want. Rather, they need to try and think like you, and make the decision that they believe you would make if you could do so.

This means that the MTDM also has to know about you – what you value with regards to your health, and what you might fear. For example, some people are very fearful of losing their thinking ability, but others may not see this as the most important thing.

You can help your MTDM know what is important to you by telling them. This is what Advance Care Planning is.

1. Ensuring you have the best MTDM to make decisions;
2. Talking to them about what is important to you;
3. Maybe writing down some of this information to help them remember and for them to be able to show your Health Practitioner.

It can be stressful making medical decisions for another person. The more you know about how they would make the decision, the easier it is, and the more confident you can be about the decisions you make for them.

Don’t hesitate to ask questions if you don’t understand information.

Note: An Advance Care Directive or other Advance Care Planning Document describes what the person would be willing to consent to, out of the treatments that are being offered as suitable for their condition. Sometimes, the MTDM misunderstands and thinks that the Health Practitioner must provide the patient with whatever they have asked for on their Advance Care Directive, even if it not suitable, or can’t help. Doctors should not provide inappropriate treatment or ineffective treatment even if it is not suitable – doing this would mean that the patient would receive all the burdens or harms of the treatment without any likely benefit.

A medical treatment decision-maker’s guide for when the person lacks capacity to undertake advance care

Advance Care Planning and Children

Young people under the age of 18 can also do Advance Care Planning but there are some differences to the process for adults.

Young people under 18 years of age are not able to appoint a Medical Treatment Decision Maker. Their parent or guardian is the Medical Treatment Decision Maker

Young people under 18 years of age, with decision-making capacity, are able to appoint a Support Person. This person can be another child. The role of the Support Person is to help the patient gather and understand information, to help them make their own decisions, and to advocate for their preferences and values in the event that the person loses capacity.

Young people under 18 years of age, with decision-making capacity, are able to complete an Advance Care Directive. They may complete a Values and/or Instructional Directive.

The witnessing requirement is that one witness must be a ‘Child and adolescent psychiatrist’, or a ‘Clinical neuropsychologist with special qualifications and experience’. It is highly recommended that the second witness be the main treating doctor.

Please Note: The Supreme Court may override an Instructional Directive refusing life-saving treatment, where that refusal is not in the best interest of the young person eg blood transfusion for a reversible condition.

Resource: Royal Children’s Hospital ‘Thinking Ahead’ for children with life limiting conditions

Other Resources

Victorian Department of Health Advance Care Planning forms

Advance care planning forms (health.vic.gov.au)

Advance Care Planning Australia

Advance Care Planning

Office of the Public Advocate Victoria

Home – Office of the Public Advocate

How Northern Health ACP Program can help you

We can help Patients and Consumers:

• With Information about Advance Care Planning
• With assistance to complete Advance Care Planning Documents. We would send you back to your doctor, for the signing and witnessing. This could be your General Practitioner or specialist.

We can provide education about Advance Care Planning to:

• Community groups, such as those run by local council
• Retirement Villages
• Residential Aged Care Facilities
• Non-Northern Health Clinicians

Contact us

Program Manager: 9495 3235
Administration: 9495 3140
acp@nh.org.au
Click here to refer to the Advance Care Planning Program
Interpreter Service: Please call 131 450 (free service)

Frequently asked Questions

Q. I have dementia. Can I still make my own medical treatment decisions.

A. You can still make your own decisions while you have the ability (capacity) to make and communicate your decisions. If your dementia is in the early stages, you may still be able to make all your healthcare decisions. As your dementia progresses, you may be able to make some decisions but maybe not more complex decisions. Gradually, you may lose ability to make any decisions. Because dementia is known to affect a person’s thinking ability, this is a condition where it is possible to do Advance Care Planning before the ability to think is too greatly affected.

Q. I don’t have anyone on the list of who can be a Medical Treatment Decision Maker. Can I appoint a friend?

A. Yes, you can

Q. What if I won’t have a Medical Treatment Decision Maker?

A. Less serious decisions will be made by your Health Practitioner. For more serious decisions, consent or refusal of treatment will need to be given by the Office of the Public Advocate (Vic). This excludes emergency decisions where consent is not required. If you won’t have a Medical Treatment Decision Maker, it is particularly important to consider writing down things that are important for you in an Advance Care Directive – this will be your voice if there is ever a time you cannot directly participate in decision-making.

Q. My father wants to appoint me as his Medical Treatment Decision Maker but I don’t want this role. We have very different values and beliefs, and I would find it difficult to follow what I know he would want. Do I have to accept the role of Medical Treatment Decision Maker?

A. You don’t have to accept appointment as Medical Treatment Decision Maker, if you don’t want this role. It can be very difficult to make decisions for someone who has different values and beliefs to yourself. Some people can manage this but it is difficult. This is why is it is important for the person making the appointment to think carefully about who to appoint. The most suitable person may not be the person who has the closest family relationship.

Q. Can I write my wishes for medical treatment in my Will?

No, a Will only has effect after a person dies. It may not be looked at until some weeks after a person dies, which would be too late if there was information there about your medical treatment.

Q. Is an Advance Care Directive or an Appointment of a Medical Decision Maker completed in another Australian state, recognised in Victoria?

A. All Australian states and territories have different legislation for Advance Care Planning.

• An Advance Care Directive completed in another state or territory will be recognised as a Values Directive
• A properly completed appointment of a Medical Decision Maker completed in another state or territory will be recognised as the Medical Treatment Decision Maker in Victoria.

Q. Can someone write an Advance Care Plan for someone who has already lost the ability (capacity) to do their own Advance Care Planning?

A. Only a person with capacity can appoint someone as a Medical Treatment Decision Maker or complete a Victorian Advance Care Directive.

Advance Care Directives are intended to be completed by a person for themselves. Even if a person lacks capacity to complete an Instructional Directive, they may be quite able to communicate what is important to them, using a Values Directive.

In practice, there are documents called Advance Care Plans that are completed on behalf of a person lacking capacity to do so. The person completing them, should be trying to write down what they already know about the person’s preferences and values. At Northern Health, our preference would be to use the form Victorian Form, ‘What I understand to be the person’s preferences and values’.

Q. What does it mean to have capacity?

A. Having capacity to make decisions is a necessary part of making your own decision. Capacity means that you have the ability to make a decision. Making a decision that others think unwise does not mean that you lack capacity.

The law assumes adults have capacity, unless proven otherwise. Capacity is specific to a decision. For example, you may be able to make simple decisions about your healthcare but if you needed a big operation, you might not be able to understand this.

To have Capacity, you must:

• understand the information relevant to the decision and the effect of the decision;
• retain that information to the extent necessary to make the decision;
• use or weigh that information as part of the process of making the decision;
• communicate the decision and the person’s views and needs as to the decision in some way, including by speech, gestures or other means.

Information must be provided in a way that optimizes a person’s ability to understand. e.g. use of interpreter, use of diagrams, optimal timing when the person is not sleepy after medication.

A person may be able to make their own decision if given appropriate support. Even if a person cannot make their own decision, they should still be included in the decision-making as much as they are able or wish to be involved.

Q. I know what I want for my future healthcare but I can’t physically write or type into the form, or even sign it. How can I plan?

A. There is a Victorian form called, ‘Advance Care Directive for Adults for someone signing on your behalf’. The person the form, is about, must have capacity (ability) to make their own decisions. However, if they can’t physically sign the form, someone else can complete the form and sign it as directed by the person.

Q. What is a Goals of Care form? Is this different from an Advance Care Directive?

A. Goals of Care can have several meanings. It may be about what the person’s own goals are for the health and medical treatment.

In hospital or Residential Aged Care Facilities, there is a Goals of Care form used, that is a quickly accessible summary of the medical treatment plan, including any limitations to how far the treatment should be escalated.

It brings together what is possible for the person’s illness, and what they would consent to or refuse out of what might be medically possible.

It is common to have Goals of Care discussions following admission to hospital or to RACF. Although some people might find this difficult, it is important that we don’t provide treatment that the person would not want to receive or could not benefit them. Thinking about this by doing Advance Care Planning, prior to becoming ill, can help when important decisions need to be made.

People who lack capacity (ability) to do Advance Care Planning

Only a person with capacity can appoint someone as their Medical Treatment Decision Maker or complete a Victorian Advance Care Directive.

Advance Care Directives are intended to be completed by a person for themselves. Even if a person lacks capacity to complete an Instructional Directive, they may be quite able to communicate what is important to them, using a Values Directive.

In practice, there are documents called Advance Care Plans that are completed on behalf of a person lacking capacity to do so. The person completing them, should be trying to write down what they already know about the person’s preferences and values. That is, they should seek to make a written record of past verbal Advance Care Planning.

At Northern Health, our preference would be to use the Victorian Form –

‘What I understand to be the person’s preferences and values’ form: information to help guide future medical decisions for a person who is unable to express their own preferences.’

This form is for people who cannot make medical decisions or express what they want.

It can be completed by the Medical Treatment Decision Maker and/or others the person knows well. Sometimes this may be professional carer. Sadly, some people have no family or friends.

What is written in this form will help the Medical Treatment Decision Maker and health professionals to make medical decisions that the person would want.

If there is no Medical Treatment Decision Maker, then someone from the Office of the Public Advocate may be required to consent to the person’s treatment, and the information in this form will be very helpful for them to understand what is important to the person.

Preferences and Values form

Information for Residential Aged Care

It is important to understand that an Advance Care Planning document completed by a Resident for themselves is the best information. If a Resident is admitted with a Victorian Advance Care Directive, do not ask them to transfer the information to a facility Advance Care Planning form, unless they want to update their Advance Care Planning document.

Similarly, do not ask a family to transfer the information from an Advance Care Directive, completed by a person with capacity, onto a facility form if the Resident has now lost capacity. This is exactly why the Advance Care Directive was completed and it is now time to use it.

The RACF Goals of Care form can be a way to bring together the Advance Care Planning, with the information that is now available about the Resident’s health condition.

The RACF Goals of Care form is a brief summary of their medical treatment plan. It describes the treatment that the Resident or their MTDM consents to, within the limits of what might be possible. It is clear information that can be accessed quickly in a crisis and acted upon. Think of the RACF Goals of Care as a ‘now care plan’. It is based on the current illness context. If that illness context changes, the Goals of Care will need to be updated. Similarly, if a Resident with capacity changes their mind about treatment they would consent to, their Goals of Care will also need updating.

In Victoria, there is a range of support available depending on your location:

• Your local Residential InReach service
• Victorian Virtual Emergency Department based at Northern Health
  Home – Victorian Virtual Emergency Department (vved.org.au)
• Palliative Care Advice Service
  Phone: 1800 360 000 (7am-10pm every day)
• Community Palliative Care Services

If you have questions about interpreting Advance Care Planning documents, it may be helpful to speak to the Office of the Public Advocate Victoria, if you don’t have someone to seek advice from.

Aged Care Facility Goals of Care Form

Information for Health Professionals

When doing Advance Care Planning, many people will appoint or identify their MTDM and then speak with them about what is important.

Verbal Advance Care Planning must be considered in treatment planning, along with written information.

Even with written or verbal Advance Care Planning, it may not be clear to a worried or tired MTDM about how to make the best decision for the person they represent. It is important the Clinicians facilitate the decision-making, helping the MTDM recognise what they know about the person and how to apply it to the decision at hand.

The Clinician may need to remind the MTDM that they must do what they believe the person would and not do what they or the family would want. This can be hard when the MTDM and family are facing a person dying. The desire to try and keep someone they love alive may be overwhelming, but it would be the wrong thing to do (legally and ethically), if the patient doesn’t want that treatment.

A clinicians guide to medical decision making for when the person lacks capacity to undertake advance care planning (publicadvocate.vic.gov.au)

• Locations offering this service
• Northern Hospital Epping
• Broadmeadows Hospital
• Craigieburn Centre
• Bundoora Centre
• Kilmore District Hospital

• Related services
• Aboriginal Support
• Acute Pain Service
• Adult Acute Inpatient Units
• Adult Community Teams
• Adult Continence