End of Life Decision Making

Adults & Incapacity

As people suffer certain types of terminal illnesses, and/or advance in age, some people may no longer be able to understand the nature or effect of treatments, may not be able to communicate their wishes, and may lose their capacity to consent to or refuse treatment. End of life decision making in such circumstances is complex, as the person involved lacks capacity to make decisions for him or herself at a time in which it is likely that important health care decisions need to be made.

In particular, besides the treatment decisions discussed generally in the section on consent and incapacity, decisions may need to be made concerning whether to withhold or withdraw treatment in certain circumstances or at a certain point.

Decisions about the withholding or withdrawal of treatment

When a patient lacks capacity to make health care decisions, it has been recognised as lawful to withhold or withdraw treatment:

  • if the treatment is not in the patient’s best interests (determined by the patient’s doctors or the Court when there is disagreement or a need for clarification);
  • when the Court has declared such withholding or withdrawal of treatment lawful;
  • when there is an advanced care directive (provided it is specific and relevant to the circumstances); and
  • under statutory regimes that provide for substitute decision making (although note, in some jurisdictions the extent of the power of substitute decision makers to make such decisions is unclear).

What is an advanced care directive?

An advanced care directive is a document in which a person has made plans for a future time when they will be unable to consent to or refuse treatment.

It is a document (often in a required form prescribed by legislation) in which instructions about what health care a person does or does not wish to receive are contained.

When does an advanced care directive have legal force?

To have legal force, such directives often require specificity as to

  1. the type of treatment and
  2. the circumstances in which the directive is to apply.

In addition, some jurisdictions have statutory provisions that limit when advance care directives may be given in relation to refusing life-sustaining measures in advance of losing capacity.

Are there circumstances in which a health practitioner does not have to follow an advanced care directive?

There are statutory provisions in all states and territories, except NSW and Tasmania that provide for when an advanced care directive does not need to be followed. Generally a healthcare practitioner can refuse to comply with an advanced care directive concerning the withholding or withdrawal of treatment if the person did not intend the directive to apply in the particular circumstances; or if it does not reflect the current wishes of the person. It may also be refused in some cases if it is uncertain or unclear as to whether it would apply in the circumstances.

Guardians and Substitute Decision Makers

Whether in conjunction with an advanced care directive or not, a person may also appoint somebody (for example a guardian or a ‘substitute decision maker’) that they wish to make decisions on their behalf during any time of incapcity. The person appointed needs to be over 18 years old, of sound mind, the appointment needs to be made in writing (in an approved form), and will need to be witnessed. Note, while the appointed person will be able to make decisions for the incapacitated person, there may be limits upon when they may refuse treatment, and requirements for when they do.

If a person is incapacitated and unable to make decisions for him/herself, and they have not appointed somebody on their behalf, a substitute decision maker may be recognised at law (for example a spouse or relative), or appointed by the Court (for example, a Court appointed guardian). That person will be able to consent to, or refuse treatment, on the patient’s behalf as per the above (and discussed in the section on consent and incapacity).

The Court may also intervene for example, if a substitute decision maker does not appear to be acting in the best interests of the patient, or there is disagreement with health practitioners about what those best interests are.

Find out more

See also Advance Care Planning Australia, which has information about advance care planning and end of life care, and links to information in each state/territory of Australia.