Fillable Acd Form Info Book (New South Wales)

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MAKING AN
ADVANCE CARE
DIRECTIVE
NSW MINISTRY OF HEALTH
100 Christie Street
ST LEONARDS NSW 2065
Tel. (02) 9391 9000
Fax. (02) 9391 9101
TTY. (02) 9391 9900
www.health.nsw.gov.au
This work is copyright. It may be reproduced in whole or in
part for study or training purposes subject to the inclusion of
an acknowledgement of the source.
It may not be reproduced for commercial usage or sale.
Reproduction for purposes other than those indicated above
requires written permission from the NSW Ministry of Health.
© NSW Ministry of Health 2018
SHPN (OCHO) 190329
ISBN 978-1-76081-189-1 (Print)
ISBN 978-1-76081-190-7 (Online)
Further copies of this document can be downloaded from
the NSW Health website www.health.nsw.gov.au
August 2019
An Advance Care Directive is an important way
of letting people know your wishes about your
healthcare and treatment should you find yourself
in a position where you are seriously ill or injured
and not able to make decisions. Having an
Advance Care Directive will make it easier for your
loved ones and health sta if they need to make
decisions for you.
An Advance Care Directive is an important result
of Advance Care Planning.
For more information about Advance Care
Planning, please see http://www.health.nsw.gov.
au/patients/acp/Pages/default.aspx
What is an Advance Care Directive?
An Advance Care Directive is a way to say what
healthcare treatments you would like to have or
refuse, should you be in a position where you
are seriously ill or injured and unable to make
or communicate decisions about your care and
treatment.
An Advance Care Directive can only be made by
you as an adult with decision making capacity.
If it is valid, it must be followed. Health
professionals and family members have no
authority to override a valid Advance Care
Directive.
An Advance Care Directive may include one or
more of the following:
• the person you would like to make medical
decisions for you if you are unable to make
decisions
• details of what is important to you, such as your
values, life goals and preferred outcomes
• the treatments and care you would like or would
refuse if you have a life-threatening illness or
injury.
Why is an Advance Care Directive
important?
Making an Advance Care Directive is an important
part of Advance Care Planning.
None of us know what will happen in the future or
can predict what might happen with our health.
Medical advances mean that there are treatments
which can keep you alive when you are seriously
ill or injured, and which may prolong your life.
Some people have firm ideas about how they
want to live the rest of their life, including
conditions or treatments that they might find
unacceptable.
In a crisis your family may find it dicult to decide
what treatment is best for you. An Advance Care
Directive will help your family and doctors to
know what you would want when you are not
able to tell them yourself. It’s best to write your
Advance Care Directive so that your wishes
are clearly recorded.
Making an Advance Care Directive
The purpose of this Information Booklet is to provide information to help
you complete your Advance Care Directive. An Advance Care Directive
form is provided at the end of the booklet, for you to complete and tear o.
Making an Advance Care Directive 1
This booklet will help guide
you through decisions that
you may wish to consider
when making an Advance
Care Directive.
2 Making an Advance Care Directive
How do I prepare for making an
Advance Care Directive?
The first step is to think about what would be
important to you at end of life and what matters
to you – your values. This may include:
• thinking about what kind of care you would like
to receive or refuse
• who you would like to make decisions on your
behalf and
• where you would like to be cared for if you were
dying.
In the Advance Care Directive form at the back
of this booklet, Section 2 includes space for you
to write some statements if you wish. There is
no right or wrong answer – it is up to you to
identify what is important to let others know.
This information will help your family and those
making decisions for you to understand what
treatment and care you want.
Some examples of statements about values are
provided in the Common Terms section on page
9. If you’re not sure what you would want, or
would like to read more, the following websites
might be helpful:
• Dying to Talk http://dyingtotalk.org.au/
• MyValues https://www.myvalues.org.au/
The next step is to talk with your family, friends
and health professionals.
Talking to your family and friends
can be dicult. You might start by
saying that like writing a will, you
are planning ahead for a time when
you might not be able to make
decisions about your health. Make
it clear to your loved ones what
treatments you would accept or
refuse if you are very unwell.
Your doctors can help by explaining
what treatments you could include
in your Advance Care Directive
based on your current health.
They can also make sure that what
you write can be understood by a
health professional.
Working through the Advance Care Directive form
at the back of this booklet will help identify what
is important to you, and what you would like to let
your loved ones and healthcare providers know
about.
How do I make an Advance Care
Directive?
In NSW, an Advance Care Directive can be spoken
or written.
Unlike in other states, in NSW there isn’t a specific
form to use for an Advance Care Directive. An
Advance Care Directive can simply be written on
a piece of paper, not witnessed and still be legally
enforceable. However, signed Advance Care
Directives are the recommended way to ensure
that your wishes are recorded.
If you want to make an Advance Care Directive
you can choose to:
• use the Advance Care Directive form developed
by NSW Health at the back of this booklet
• use another form, such as one of those available
from www.planningaheadtools.com.au
• write a letter or statement about your wishes
• tell someone that you trust and who knows
you well.
Deciding who will make decisions
for you if you cannot make them.
It is important to think about who you would
like to make healthcare decisions for you if you
are seriously ill or injured and can no longer
make decisions. Some people choose a family
member or close friend or appoint an Enduring
Guardian/s.
If it’s not clear in your Advance Care Directive who
this person or people are, your doctor will ask
someone else to make the decision for you. This
person is known as the Person Responsible. A
Person Responsible is not always a relative. You
may also hear people use the term Substitute
Decision Maker.
Further information about these terms is provided
in the Common Terms section on page 9.
When does my Advance Care
Directive apply?
Doctors and health care professionals will only
look at your Advance Care Directive if you are
unable to make or communicate decisions about
your healthcare and treatment.
Your Person Responsible must refer to your
Advance Care Directive before making any
medical or health decisions.
Before acting on any instructions that your
Advance Care Directive may contain about your
treatment or care, doctors will assess if it is valid.
Part of that assessment is understanding whether
it applies to your current situation.
For example, if you were admitted to hospital
because you had fallen over and hit your
head and had concussion, and were not able
to communicate your wishes, you would be
expected to get better and parts of your Advance
Care Directive that relate to end of life care may
not be considered to apply to that situation.
However, if you had suered a major stroke
or heart attack and were unconscious and not
able to communicate, and were not expected
to get better, the doctors may consider that
your Advance Care Directive may apply in that
situation.
Pain relief and managing discomfort are always
important. If your Advance Care Directive states
you want to die a natural death, you will still be
given pain relief if needed.
When is my Advance Care Directive
valid?
An Advance Care Directive will only be used when
you do not have capacity to decide for yourself or
to communicate your wishes.
Your doctor will consider your Advance Care
Directive to be valid if:
• you had capacity when you wrote it
• it has clear and specific details about treatments
that you would accept or refuse
• it applies to the situation you are in at the time.
The NSW Supreme Court has said that valid
Advance Care Directives must be followed.
This is because they are a part of a person’s
right to make decisions about their health.
If an Advance Care Directive is valid, it must
be followed. Health professionals and Persons
Responsible have no authority to override a
valid Advance Care Directive.
Making an Advance Care Directive 3
4 Making an Advance Care Directive
Where should I keep my Advance
Care Directive?
You should keep your Advance Care Directive in a
place that is easy for you or someone else to find
it. It is a good idea to keep a copy with you, or to
keep a card in your wallet that lets people know
that you have an Advance Care Directive and
where it can be found.
It is a good idea to leave a copy with your Person
Responsible, family and/or carer, doctor and/or
healthcare facility.
Make sure you know where all the copies are. If
you change your Advance Care Directive, you will
need to replace all of the copies.
Can I record my wishes regarding future
healthcare in my will?
No. Your will only starts to operate after your
death. Any information about your health in your
will not be available to your Person Responsible or
doctor(s) while you are alive.
Can someone appointed as my Power of
Attorney consent to medical and dental
treatment on my behalf?
No. Their role is to manage your business,
property and financial matters.
Is an Advance Care Directive permission or
consent for euthanasia?
No. You cannot request or direct a doctor or any
other person to actively and deliberately end your
life. Euthanasia or assisted dying is illegal in all
Australian States and Territories.
I prepared an Advance Care Directive
when I lived interstate. Is this recognised
now that I live in NSW?
Yes. Advance Care Directives made in other
Australian states and territories are recognised
in NSW.
I have an Advance Care Directive but have
decided that I would like my Enduring
Guardian to make the best decision they
can at the time. Can I revoke my Advance
Care Directive?
Yes, you can retract/cancel/void your Advance
Care Directive at any time while you have
capacity. It is important to make sure you let
people know you have revoked your Advance
Care Directive and destroy all copies.
What if I change my mind about my
Advance Care Directive?
You can change your Advance Care Directive as
often as you like, as long as you have capacity.
It is a good idea to read over anything you have
written once a year, to make sure it is still current.
If you change your Advance Care Directive,
you should make sure you let people know and
replace all of the copies with the new Advance
Care Directive.
What’s the dierence between an Advance
Care Directive and an Advance Care Plan?
An Advance Care Directive can only be made by
you as an adult with decision-making capacity.
If it is valid, it must be followed. No one can
override your Advance Care Directive, not even
your legally appointed guardian.
An Advanced Care Plan can be written by you
or on your behalf. It documents your values
and preferences for healthcare and preferred
health outcomes. The plan is prepared from
your perspective and used as a guide for future
healthcare decision making, if you are unable to
speak or otherwise communicate your wishes for
yourself.
An Advanced Care Plan may be developed for
and/or with a person with limited capacity (ability
to make decisions), so therefore it does not need
to be followed.
Frequently Asked Questions
Making an Advance Care Directive 5
6 Making an Advance Care Directive
What is capacity?
Capacity refers to an adult’s ability to make a
decision for him or herself.
Capacity is specific to the particular decision that
needs to be made. In some circumstances, the law
sets out what tests must be met for capacity to
make certain decisions, for example to consent to
medical treatment.
Generally, when a person has capacity to make a
particular decision they can do all of the following:
• understand and believe the facts involved in
making the decision
• understand the main choices
• weigh up the consequences of the choices
• understand how the consequences aect them
• make their decision freely and voluntarily
• communicate their decision.
Can I insist on being given a particular
treatment or procedure?
No. Your health care team will consider your
wishes, but does not have to oer you treatment
that may not benefit you.
What about organ and tissue donation for
transplantation?
Organ donation is a life-saving and life-
transforming medical process. Organ and tissue
donation involves removing organs and tissues
from someone who has died (a donor) and
transplanting them into someone who, in many
cases, is very ill or dying (a recipient).
People 16 years of age or older can register their
donation decision on the Australian Organ Donor
Register at https://www.humanservices.gov.
au/customer/services/medicare/australian-
organ-donor-register or by contacting their local
Centrelink or Medicare Service Centres, myGov
shopfront or Access Points.
It is important that you let your family know
your decisions about organ and tissue donation.
In Australia your family will always be asked to
confirm your donation decisions before organ and
tissue donation can proceed.
Some patients are so severely injured or ill
that they do not respond to lifesaving medical
treatments. The doctors caring for that patient
may agree that they will not survive and that
further medical treatment is no longer of any
benefit to them.
The doctors may then ask their family about that
person’s wishes about organ and tissue donation.
If the person had indicated that they wanted to
become an organ and tissue donor after their
death, the doctors may also ask the family
about several treatments which may be given
before that person dies, only for the purpose of
improving the function of any donated organs
when transplanted. These treatments are of no
medical benefit to the patient and are called
antemortem interventions. Examples include
antibiotics, blood thinning drugs or drugs to
control blood pressure.
If you want to be an organ donor, the Advance
Care Directive asks you to declare your consent to
antemortem interventions.
If you do not consent to antemortem
interventions, it is still possible to be an organ
donor.
I’ve heard about Body donation – what is
that?
Body donation is where a person’s body is given
to a body donor program and / or a licensed
anatomical facility either following the person’s
written consent prior to their death or with the
consent of their senior available next of kin
after their death. Bodies maybe used for the
teaching of medical and health students, training
of surgeons in new surgical techniques or for
research.
In NSW a body donation program is usually
organised through a university or medical
research facility.
Most body donation programs encourage people
to register to be an organ donor as well as a
body donor, if they would like to do so. Where a
person has consented to body donation and organ
donation, preference is given to organ donation if
suitable, because of its life saving benefits.
If you have registered your wish to donate with
a body donor program you should make sure
that your family knows your decision. That way
either your family or hospital sta can contact the
program you are registered with when you die.
Making an Advance Care Directive 7
8 Making an Advance Care Directive
An Advance Care
Directive is an important
way of letting people
know your wishes about
your healthcare and
treatment should you
find yourself in a position
where you are seriously
ill or injured and not able
to make decisions.
Advance Care Planning
Advance Care Planning involves thinking about
what medical care you would like should you find
yourself in a position where you are seriously
ill or injured and cannot make or communicate
decisions about your care or treatment. It includes
thinking about what is important to you - your
values, beliefs and wishes.
Advance Care Planning can include one or more of
the following:
• talking with your family, carers and/or health
professionals
• developing an Advance Care Plan
• making an Advance Care Directive.
Ideally Advance Care Planning happens early,
when you are well and are able to understand the
choices available to you about your healthcare
and treatment. However it can be done at any
time you have capacity.
An Advance Care Plan records preferences about
health, personal care and treatment goals. It may
be completed by discussion or in writing.
If you are able to make decisions about your
future healthcare, you can make an Advance Care
Plan by yourself or together with people that you
trust and/or who are important to you.
If you are not able to make decisions, an Advance
Care Plan can be made by a family member or
someone who knows you well, together with a
health professional. It should include your known
wishes about treatment.
Advance Care Directive
An Advance Care Directive is a way to say what
healthcare treatments you would like to have
or refuse, should you find yourself in a position
where you are seriously ill or injured and unable
to make or communicate decisions about your
treatment and care.
An Advance Care Directive may include one or
more of the following:
• the person or people you would like to make
medical decisions for you if you are unable to
make decisions
• details of what is important to you, such as your
values, life goals and preferred outcomes
• the treatments and care you would like or refuse
if you have a life-threatening illness or injury.
Person Responsible
In
NSW the Guardianship Act 1987 (NSW)
states
that the Person Responsible is (in order):
1. Your guardian
This is a person or people who have been legally
appointed to make medical and/or dental
decisions for you. In some situations a guardian
may be appointed for someone, but most people
are able to choose their own guardian.
If you are 18 years of age or older and have
capacity, you can appoint an Enduring Guardian
(you can appoint one or two). When you appoint
the Enduring Guardian(s) you can decide what
medical and/or dental decisions you would like
them to be able to make for you, if you do not
have the capacity to make the decision yourself.
Common Terms
Making an Advance Care Directive 9
10 Making an Advance Care Directive
Your Enduring Guardian must consider your
Advance Care Directive before they make a
decision.
2. Your spouse, de facto or same sex partner
Person with whom you have a close and
continuing relationship.
3. Your carer
Person who currently provides support to you
or did before you entered residential care. This
person cannot be a paid carer. The carer support
payment is not considered payment.
4. A close friend or relative
Person with whom you have an ongoing
relationship.
Substitute decision maker
A substitute decision maker is a person who is
appointed or identified by law to make decisions
for an individual whose decision making
capacity is impaired. A substitute decision
maker may be appointed by the individual (for
example appointing an Enduring Guardian or
making a Power of Attorney), appointed for the
individual (for example a guardian appointed
by the Guardianship Division), or identified as a
substitute decision maker for medical and dental
treatment by the NSW Guardianship Act ‘Person
Responsible’ hierarchy.
Values statements
Some people may choose to record general
statements about what is important to them -
their values, beliefs and wishes - on their Advance
Care Directive or in their Advance Care Plan.
The following values statements are provided
as examples of what you may wish to include in
Section 2 of the form (there is no right or wrong
– it is entirely up to you what you record to let
others know):
Beliefs and values:
It is important for me to be able to communicate
in some way, even if I cannot speak.
Life has meaning when I can enjoy nature and
when I can practise my faith.
I value my privacy.
Physical or mental health concerns that you may
want considered:
I do not want to struggle to breathe.
I do not want to be in pain.
It is important to me that I spend time in my
garden.
Other information that you would like
considered:
I would like to stay at home as long as it is not too
hard on my family or the people caring for me.
I would not like to die at home.
I worry that my family or the people caring for me
will not know what to do.
I want flowers in my room.
Cultural, spiritual and/or social care:
I would like prayer, religious or spiritual rituals in
my own language.
I would like my music to be played.
www.health.nsw.gov.au 1
SECTION 1
YOUR DETAILS AND YOUR PERSON RESPONSIBLE
Family name:
Given names:
Date of birth:
Address:
I have been provided with and read the ‘Making an Advance Care Directive’ information booklet. Please tick if yes
I have legally appointed one or more people as my Enduring Guardian/s and they are aware of this Advance Care Directive.
Please tick if yes
ENDURING GUARDIAN 1 ENDURING GUARDIAN 2
Name:
Home phone number:
Mobile phone number:
Email address:
I have not appointed an Enduring Guardian
If, because of my medical condition, I am not able to understand and make decisions about my treatment or can’t tell
the doctors or my family, my Person Responsible as determined according to the hierarchy within the NSW
Guardianship Act (1987) is
PERSON 1 PERSON 2
Name:
Relationship:
Home phone number:
Mobile phone number:
Email address:
NSW Health Advance Care Directive (ACD)
www.health.nsw.gov.au 2
SECTION 2
PERSONAL VALUES ABOUT DYING
Information about your values is important as it is not possible for this document to cover all medical situations.
Information about what is important to you may help the person who is making decisions on your behalf when they
are speaking to the doctors about your care and treatment.
In this section you can include:
•  things that are important to you at the end of life (your beliefs and values)
•  issues that worry you, and
•  personal, religious or spiritual care you would like to receive when you are dying.
If you do not want to complete this section, you should sign the bottom of the section on page 3
If I am unable to communicate and not expected to get better:
•  I would like my pain and comfort managed; and
•  when deciding what treatments to give to me or not to give me, I would like the person/people making health
decisions for me to understand how the following would make me feel (initial the box that is your choice).
If I am unable to communicate by any means, and not expected to get any better:
VALUES Bearable
Unbearable
(I would like treatment
discontinued and to be allowed
to die a natural death)
Unsure
1.  If I can no longer recognise my family and loved
ones, I would find life…
2.  If I no longer have control of my bladder and
bowels, I would find life…
3.  If I cannot feed, wash or dress myself I would find
life…
4.  If I cannot move myself in or out of bed and must
rely on other people to reposition (shift or move)
me, I would find life…
5.  If I can no longer eat or drink and need to have food
given to me through a tube in my stomach I would
find life…
6. 
If I cannot have a conversation with others because I do
not understand what people are saying, I would find life…
www.health.nsw.gov.au 3
SECTION 2
PERSONAL VALUES ABOUT DYING
At the end of my life when my time comes for dying, I would like to be cared for, if possible
(initial the box of your choice)
At home
In a hospital
Other location (e.g hospice, residential aged care - please provide details)
I do not know. I am happy for my Person Responsible/family to decide.
When my Person Responsible is making decisions about care at the end of my life, I would like them to consider the
statements below.
If you need extra space please attach an additional page.
I do not want to complete Section 2:
(Signature)
www.health.nsw.gov.au 4
DIRECTIONS ABOUT MEDICAL CARE
SECTION 3
CPR
If I am not expected to recover, or if my life is unbearable as indicated in my Personal Values About Dying, Section
2 on page 2,
THEN, if my heart or breathing stops (please initial one box only):
I would accept CPR
OR
I would not accept CPR. Do not try to restart my heart or breathing
OTHER MEDICAL TREATMENTS
If I am not expected to recover, or if my quality of life is unbearable as indicated in the table my Personal Values
About Dying, Section 2 on page 2 and 3, THEN the following treatments would be UNACCEPTABLE to me: the
following medical treatments (initial the box/boxes that apply to your wishes):
Artificial ventilation through a tube (also called ‘life support’, ‘breathing machine’)
Renal dialysis - (kidney function replacement)
Life prolonging treatments that require continuous administration of drug
OTHER (e.g. food and fluid through a tube). Please list below:
Even if I am expected to get better I would never want the following medical treatments:
I do not want to complete Section 3:
(Signature)
This section applies to when you are unable to make or communicate decisions about your health care and
medical treatment, including CPR.
If you are able to communicate you will be included in decisions about your care.
If you do not want to complete this section, you should sign the bottom of this section
Cardio Pulmonary Resuscitation (CPR)
CPR refers to medical procedures that may be used to try to start your heart and breathing if your heart or breathing
stops. It may involve mouth to mouth resuscitation, very strong pumping on your chest, electric shocks to your heart,
medications being injected into your veins and/or a breathing tube being put into your throat.
www.health.nsw.gov.au 5
SPECIFIC REQUESTS FOR ORGAN, TISSUE AND BODY
DONATION
SECTION 4
My wishes about organ, tissue and body donation for transplantation following my death are (initial your choice
for each statement):
Yes No
I would like to donate my organs and tissues for transplantation following my death.
I have discussed my organ and tissue donation wishes with my family and friends and
they are aware of my decision.
I would like to, or have already made arrangements to, donate my body for education
and/or scientific research
Antemortem interventions for organ donation (treatment/s immediately before my death only for the purpose of
organ donation)
Yes No
It is my wish to donate my organs for transplantation after my death. If I am dying,
I consent to the doctors providing treatments for my organs before my death
(including artificial
ventilation, insertion of intravenous lines and administration of
medications) intended only
for the purpose of enabling me to donate my organs and
tissue for transplantation.
I do not want to complete Section 4:
(Signature)
If you do not want to complete this section, you should sign the bottom of this section
www.health.nsw.gov.au 6
AUTHORISATION
SECTION 5
PERSONAL DETAILS
By signing this document, I confirm that:
•  I have read the accompanying information booklet, or had the details explained to me
•  I understand the facts and choices involved, and the consequences of my decisions
•  I am aware that this Advance Care Directive will be used in the event that I cannot make or communicate my own
health care decisions. If I am able to communicate, I will be asked to make decisions about my care.
•  I have completed this Advance Care Directive of my own free will.
/ /
(Signature) (Date)
DETAILS OF WITNESS*
I confirm that
signed this document on / /
Signed: Name (please print):
Address: Phone:
TREATING HEALTH PROFESSIONAL*
Name: Designation
Address:
Phone:
Email:
I confirm that I had no reason to doubt the capacity of the person
I confirm that
had capacity and
was aware of the implications of the information in this Advance Care Directive. (Medical ocer only)
/ /
(Signature) (Date)
*
While not legally required, it is strongly recommended that a witness co-signs this Advance Care Directive and/or a health professional witnesses you sign
this form. Once completed this form is to be given to your Personal Responsible, Enduring Guardian and medical professionals.
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