End of Life Decision Making: Competent Adults

Consent

Elderly couple smiling - end of life
People are free to make decisions, including at the end of their life, about what kind of health care treatment they wish to have or not have. The details discussed in the consent section therefore also apply to end of life health care decision making. That is, regardless of age, disease, or level of infirmity, consent to, or refusal of, treatment will be valid provided the person giving such consent

  • has legal competency and capacity to make a decision about treatment,
  • understands the broad character or nature of the treatment and its effects,
  • gives consent to the specific treatment, and
  • has made the decision voluntarily.

If treatment is given without consent, regardless of the health carer’s intention, that may constitute a trespass to person.

See more on consent here:

Consent – Adults

Refusal of Treatment for Terminal Illness
and End Stages of Life – Competent Adults

End of Life - Woman in hospital bed

Can people refuse treatment at the end of their life?

Yes. It has been recognised by the Courts that people, who have the requisite capacity, may refuse treatment even if that treatment would keep them alive, or prolong their life. 1

In addition to the common law, legislation in a number of states and territories recognises that a competent adult is entitled to refuse medical treatment. 2

People may also plan for their future treatment, including planning for treatment they do not wish to have by way of writing advanced care directives. (See section on incapacity, and further below).

What is required for refusal to be accepted?

Health care decision making relies upon a person being competent and capable to make such decisions.

When assessing such competence or decision making capacity, the assessment of whether a valid consent or refusal has been given relates to a person’s ability to make a decision, it is not an assessment of the decision itself. It has therefore been said that a person may be competent, even if the reasons for his or her decision appear ‘irrational, unknown or are non-existent’. 3

In addition to assessing competence, one may consider

  • whether the decision has been made freely and voluntarily (no matter how irrational it appears),
  • whether the refusal extends to the situation at hand, or
  • whether the terms of the refusal are ambiguous or unclear. 4

If there is doubt, clarification should be sought from the person (if possible), or Court intervention may be needed if the person is incompetent or incapacitated.

Does a person need to be given all information about possible treatments before refusal?

There are conflicting views about whether a person needs to be given full information about proposed treatment in order to refuse it.

The view taken in Rossiter, was that for a refusal to be accepted, the patient must understand the nature of the treatment proposed and the consequences of not having it. Martin CJ said that once a person was given full information about the consequences of any decision he might make, the patient had the right to determine and direct the extent to which he did or did not receive treatment, and that treatment should not be delivered to him against his wishes. 5

However, an alternate view is that the right to refuse is not reliant on the patient having been given such information. This is because regardless of how much (or how little) information a person has, once he or she refuses treatment, there is no consent. To treat them anyway would give rise to civil and criminal law causes of action (such as assault and battery). It would not be a defense to argue that the refusal was ignored because the patient was not informed.

In addition, requiring practitioners to deliver information to a person who is refusing treatment might create an impracticable burden in some circumstances.

The focus therefore should be upon competence and capacity, that the decision is being made voluntarily, and the scope of the refusal. Nevertheless, perhaps it is implicit that when a competent person refuses treatment at the end of his or her life, they will at least understand what the consequences of such refusal will be.

Can people refuse some treatments and not others?

Yes. Making health care decisions, including refusing treatment at the end stages of life is about choices.

Patients do not have to accept or refuse treatment on an all-or-nothing basis.

They may accept some treatments, but not all that are offered; or they may refuse all treatment in preference for palliative care.

What are a health practitioner’s obligations in light of a refusal of treatment?

It is lawful for a health practitioner to refrain from giving a person with a terminal illness, or at the end stages of their life, anything more than palliative care.

Palliative care is care that focuses upon reducing pain and discomfort, and increasing comfort and quality of life without trying to prolong it or treat the disease.

Planning ahead: for when a person may no longer be able to make their own decisions

Planning for when a person may no longer have capacity to make decisions for themselves regarding what health care they wish to receive (eg. treatment), their lifestyle choices (eg. where they live), and/or their financial and legal affairs, and who they would like to make decisions on their behalf, is important.

Documents that set out a person’s wishes about their care, treatment, living arrangements, and/or financial and legal affairs must be signed when a person still has capacity and is competent to express such wishes. These may include documents generally referred to as an:

  • Advanced Care Directive/Plan (i.e. detailing the treatment a person would/would not like to receive);
  • Enduring Guardianship document (i.e. appointing a person(s) to make health care and lifestyle decisions);
  • Enduring Power of Attorney document (i.e. appointing a person(s) to make financial and legal decisions).

Note however that the names and requisite forms or documents vary across states. 6 A person should therefore always check to ensure they have the correct form(s) for the state or territory in which they reside.  (These types of documents are explained further in the Health Law Central section on planning ahead in ‘Consent – Incapacity‘ and the ‘End of Life – Incapacity‘ page. There are also links to relevant state and territory websites at the bottom of this page.)

Next Steps

Once a person has a general understanding of what is involved in end of life care and planning, and the various documents they might wish to have drawn up, and while they still have legal capacity, they should

  • talk to their family/people close to them about their wishes, values and beliefs about medical care and treatment towards the end of their life;
  • talk to their doctor and other health professionals about any medical or health issues they have, what treatments are available and what choices they would like to make about their medical care (eg. which treatments does the person want, not want);
  • decide who they would like to make medical decisions for them if they become unable to make their own decisions and talk to that person about it (and discuss drawing up an enduring power of attorney);
  • decide who they would like to make financial and legal decisions for them if they were unable to make your own decisions and talk to that person about it (and discuss drawing up the relevant documents).

It is always also advisable for a person considering such things to seek legal advice in the state or territory in which they live. A person can then execute the relevant documents in that state/territory ensuring all legal requirements are met.

Find out more

For further information about advanced care planning see state and territory government websites:

  • New South Wales:  has an excellent website explaining wills, power of attorney documents, guardianship documents, and advanced care directives in detail: called ‘3 Easy Ways to Plan Ahead’. That website includes answers to many questions, and useful videos to watch.
  • South Australia (Government of South Australia website specifically regarding advance care directives)
  • Tasmania (Tasmania Government website regarding advanced care planning)

There is also much information provided at Advanced Care Planning Australia.

Notes:

  1. See for example, Brightwater Care Group (Inc) v Rossiter [2009] WASC 229 at [27].
  2. For example see Medical Treatment (Health Directions) Act 2006 (ACT) s 6; Medical Treatment Act 1998 (Vic) s 4; Consent to Medical Treatment and Palliative Care Act 1995 (SA) s7; Guardianship and Administration Act 1990 (WA).
  3. Re T (An Adult)(Consent to Treatment) [1992] 4 All ER 649 at 653.
  4. Hunter and New England Area Health Service v A [2009] NSWSC 761.
  5. Brightwater Care Group (Inc) v Rossiter [2009] WASC 229 at [49].
  6. For example, in Victoria there are two types of Enduring Power of Attorney – 1) Enduring Power of Attorney (Medical) and 2) Enduring Power of Attorney (Financial). In the Northern Territory, enduring attorneys or guardians no longer exist, as new legislation provides for ‘Advanced Personal Planning’ in which a substitute decision maker may be appointed. The Advance Personal Planning Act (NT).