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Introduction

For Everyone

We have developed a new Advance Care Directive form in a effort to address the feedback we have received.

(New Planning what I want, Advance Care Directive form)

We have new audio from the Hunters Advance Care Planning,

A Families Journey (an informative DVD presentation)

(Introduction 1.8 MB)

(Why this is important 2.6 MB)

(Steps to follow 1.2MB)

Recent advances in medical technology have allowed people to survive longer despite many chronic illnesses.

It is good news that many of us will live to a very old age, but people often survive with lots of problems. We now have the technology to keep people alive artificially, where in the past, they may have died naturally.

The tough question is just how much invasive medical attention is a good thing. The best answer is that it is up to everyone as an individual to decide this question. When people are critically ill, they are usually unable to participate in these important decisions. This web site will help you to ensure that you have a say.

(Click here to hear Dr Peter Saul speaks about Advance Care Directives 2.5MB)

"planning what I want"-- the advantages:

One of the hardest situations for a doctor to face is to be called to a patient with a critical illness, when there is no plan in place. For some patients chronic illness such as dementia, or disability due to stroke may have made their quality of life very poor. For others their quality of life might have been very acceptable to them right up to this illness. The problem is that the doctor has to decide whether to start invasive medical care in an attempt to save the patient, without knowing the person as an individual or what they would want. The next step is to call the person's family for guidance, but the family members often struggle to know what to do, or worse may disagree and argue. An Advance Care Directive allows you to have a say when you are critically ill. Otherwise you are trusting the decision to someone who does not know you. Their chances of guessing what you want are poor.

Identify the important person in your life, who would make the decisions (Person Responsible). Sometimes people are not happy for one particular person to make these decisions, or they may prefer one person over another. Sometimes, there can be painful arguments if people disagree. If you think there may be a problem, appoint an Enduring Guardian, to make it clear who will make the choices.

Talk to the person who will make the decisions about your values, and your goals. These issues are so important to us all, but we rarely ever speak about them. If you have an idea of some possible outcomes that you might face, you should discuss your preferences for each of these choices. This discussion can relieve much of the responsibility placed on your family or friend. "Be kind to your family and support them with these hard decisions"

It will help to discuss your options with your GP, but you do not need to see a lawyer to write an Advance Care Directive.

You don't have to make an Advance Care Directive, but if you do not you are giving away your right to choose.

What Next?

(Person Responsible) to learn more about the way a person will be selected if you are too ill to speak for yourself.

(Advance Care Directive) to learn more about writing down your preferences.

(Enduring Power of Attorney) to learn how to look after your finances

Frequently Asked Questions (FAQs)

Are Advance Care Directives (ACDs) just for older people?

No. An ACD can be made by any adult with capacity over the age of 18 years.

What is capacity?

A person, who after adequate education is able to understand the question at hand, weigh up and understand the consequences of their own choices is said to have capacity. This person has the right to make their own financial, health and lifestyle decisions. All people are assumed to have capacity unless there is a valid reason for this to be questioned (eg advancing dementia, delerium, psychosis, depression etc). In these cases a capacity assessment can be carried out by the health or legal professionals involved.

Are ACDs legally binding?

In NSW (unlike other states), there is no specific legislation to cover this area. Therefore, ACDs fall under common law. An ACD is regarded as valid if it is specific, current, the person making it had the capacity to make valid choices and it helps if the signature has been witnessed

What should be done with an ACD once it is completed?

An ACD needs to be available at a future time when it may be needed. Ideally, a copy would be given to the likely substitute decision maker, key family members, the GP and any other doctors or health facilities involved in care.

What if someone changes their mind?

If circumstances or ideas change, then a new ACD can be made. The old document is ideally destroyed. If not however, like a will it is the most recent document that will apply.

What happens when substitute decision makers disagree with the documented wishes of a patient?

The wishes of a competent adult always prevail. Thus, a valid ACD which expresses wishes regarding active treatment or refusal of treatment takes priority over the wishes of the family. It is ideal if someone making an ACD discusses their directive with their substitute decision makers so that everyone is already aware of their wishes.

Is this another form of euthanasia?

ACDs have nothing to do with actively assisting the end of life, unlike euthanasia. Studies of nursing home patients have in fact shown that those with an ACD requesting avoidance of hospital actually lived longer than other patients who were transferred to hospital with an acute illness.

Is this about saving money?

No. ACDs are all about promoting dignity and quality of life through respecting a person’s own wishes at a time when they can no longer express these for themselves.

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