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).

Brief overviews of how each of these have been applied are given below (including recognition of difficulties in interpretation or application, and that the law is not always clear).

It is permissible to withhold or withdraw treatment that is not considered to be in the best interests of a patient. 1

While there is no exhaustive (or prescribed) set of criteria or test to determine ‘best interests’, in Airedale NHS Trust v Bland, it was held that making such a determination in the context of the withholding or withdrawal of treatment may be assisted by considering:

whether the treatment is futile,
whether the burden of the treatment outweighs its benefit, and/or
whether the treatment involves an unjustifiable interference with the dignity of the individual. 2

Of course, determining when treatment is ‘futile’, weighing ‘benefits’ and ‘burdens’, and assessing ‘unjustifiable interference with dignity’ may also be fraught with difficulties. It may be difficult to determine exactly what such terms mean, and how they should be applied. As such, and recognising that the decision to withhold or withdraw treatment is an incredibly weighty one, guidance from codes of practice and ethics committees often also come into play. For an example of one such document see the Australian Medical Association’s Position Statement on End of Life Care and Advance Care Planning 2014.

Seeking orders as to the lawfulness of withholding or withdrawing treatment is different to obtaining Court authorisation for such acts (or omissions).

The focus in a determination of lawfulness is upon a Court assessing whether at law such withdrawal is lawful, for example in light of criminal law provisions that create an obligation to provide for the ‘necessaries of life’.

The answer will be determined by the relevant criminal framework in the particular state in which the declaration is sought. 3

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.[/two_third]

Alzeihmer's tree - end of life

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.

For example, in Victoria, legislation requires a person to complete a refusal of treatment certificate specifying refusal of treatment generally or specifically in relation to a current condition — this means general refusals of treatment for some unknown event or condition in the future cannot be made. 4

In Queensland, a direction to withhold or withdraw a life-sustaining measure can not operate unless one of the following applies:

(i) the principal has a terminal illness or condition that is incurable or irreversible and as a result of which…the principal may reasonably be expected to die within 1 year;

(ii) the principal is in a persistent vegetative state (that is… has a condition involving severe and irreversible brain damage which, however, allows some or all of the principal’s vital bodily functions to continue, including, for example, heart beat or breathing);

(iii) the principal is permanently unconscious, that is…has a condition involving brain damage so severe that there is no reasonable prospect of the principal regaining consciousness;

(iv) the principal has an illness or injury of such severity that there is no reasonable prospect that the principal will recover to the extent that the principal’s life can be sustained without the continued application of life-sustaining measures;

AND

(b) for a direction to withhold or withdraw artificial nutrition or artificial hydration the commencement or continuation of the measure would be inconsistent with good medical practice;

AND

(c) the principal has no reasonable prospect of regaining capacity for health matters.

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.

In Victoria, if a person’s medical condition has changed to such an extent that the ‘current condition’ criteria is not met, then the directive does not apply. 5

In South Australia, 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. 6

In Western Australia a treatment decision in an advance health directive does not operate if circumstances exist or have arisen that the maker of that directive would not have reasonably anticipated at the time of making the directive; and would have caused a reasonable person in the maker’s position to have changed his or her mind about the treatment decision. 7

In the Northern Territory the Court can make an order that an advanced care decision is to disregarded if there is no reasonable possibility that the adult would have intended the advance consent decision to apply in the circumstances; or taking health care action in reliance on the advance consent decision would cause the adult unacceptable pain and suffering; or would otherwise be so wholly unreasonable that it is justifiable to override the adult’s wishes. 8

In Queensland a doctor may refuse to follow an advance care directive if the directive is ‘uncertain or inconsistent with good medical practice or that circumstances, including advances in medical science, have changed to the extent that the terms of the direction are inappropriate.’ 9

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. 10 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 example the execution of a refusal certificate in Victoria) 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.

Undoubtedly, issues surrounding consent, incapacity, advanced care planning, guardianship, substitute decision makers, and Court powers, are of particular importance during the end stages of life.

Find out more

Incapacity, advanced care planning and substitute decision makers
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.

Notes:

  1. Airedale NHS Trust v Bland [1992] UKHL 5, [1993] AC 789.
  2. Note although a case from the United Kingdom, Airedale has had much influence in Australia, and is a useful reference for such issues.
  3. See for example, Application of Justice Health; re a Patient [2011] NSWSC 432.
  4. Medical Treatment Act 1988 (Vic) s 5.
  5. Medical Treatment Act 1988 (Vic) s 5.
  6. Advance Care Directives Act 2013 (SA) s 32.
  7. Guardianship and Administration Act 1990 (WA) s110S(3).
  8. Advanced Personal Planning Act 2013 (NT) s 41(2) & (3).
  9. Powers of Attorney Act 1998 (Qld) s 103.
  10. Guardianship Act 1987 (NSW) ss5-6O; Guardianship and Administration Act 1996 (Vic) ss35A-35E and Instruments Act 1958 (Vic); Guardianship and Administration Act 1993 (SA) ss25-27; Guardianship and Administration Act 1990 (WA) s104Guardianship and Administration Act 2000 (Qld) s 44 ; Guardianship and Management of Property Act 1991 (ACT); Guardianship and Administration Act 1995 (Tas) ss32-33; The Advance Personal Planning Act (NT).