Substitute consent

When your patient cannot make their own healthcare decisions
Patients are presumed to have capacity to make their own healthcare decisions from age 18 and upwards, and even before that if they are a ‘mature minor’. 

But what do you do if your patient cannot make their own healthcare decisions?
 
Ultimately it may be a next-of-kin, such as a spouse, adult child or parent who makes the decision for them.  But there are a number of questions you need to ask before working out who makes the decisions, which are:
  • Is there an advance care directive (ACD) or equivalent?
  • Is there an appointed decision-maker, such as a guardian?
  • If there is no ACD or appointed decision-maker, who is the ‘default’ person to make healthcare decisions?
Is there an advance care directive?
Increasingly patients are making ACDs setting out instructions and preferences about their healthcare. 
Normally a valid ACD will prevail over the views of any other decision-maker. 

It is important to be aware of the requirements for an ACD where you practice, as these vary across Australia. 

Is there a guardian / other appointed decision-maker?
If your patient lacks capacity and has not made an ACD, there may be a decision-maker already appointed. 
Before losing the capacity to make health care decisions, your patient may have appointed a healthcare decision-maker.  They could be a next-of-kin, other family member or friend.  In some situations, a guardian is appointed by a Tribunal or a Court. 

There are formal requirements for making these appointments, including documentation.   They may impose limits on the kinds of healthcare decisions which can be made. 

What if there is no guardian / other appointed decision-maker?
But what if the patient has not made an ACD and there is no appointed decision-maker? 

If there is no appointed decision-maker, there are a number of ‘default’ decision-makers who can make healthcare decisions for your patient. 

Generally the default decision-maker needs to be both 18 years old (or over) and in a close and continuing relationship with the patient.  There is also a hierarchy of decision-makers, which are (in order of primacy):
  • SA – domestic partner, relative or friend
  • NSW, Queensland, Tasmania & ACT – spouse or partner, unpaid carer, or relative or friend
  • Victoria – spouse or partner, primary carer, oldest adult child, oldest parent and oldest adult sibling
  • WA – spouse or partner living with the patient, nearest relative, unpaid carer or other with close personal relationship.
There is no regime for default decision-makers in the NT.  Questions of necessity of treatment, patient’s best interests, reasonableness of treatment and whether there are any disputes between relatives or carers are relevant considerations in determining whether treatment can be provided without an ACD (called an advance personal plan in the NT) or an appointed guardian. 

Are there limits on the kinds of decisions which can be made?
A broad range of healthcare decisions can be made by appointed or default decision-makers.  In making decisions, they need to take into account things such as the patient’s expressed wishes and interests. 

Generally doctors are under no compulsion to provide treatments they consider to be of no benefit, not in the patient’s best interests or which are futile, even if directed by an appointed or default decision-maker. 

There can be limits on decisions involving certain significant or special treatments.  Depending where you practice, these can include such things as termination of pregnancy or sterilisation.  In those cases, Tribunal or Court approval is usually required. 

There are also limits in certain states and territories around end of life care, which include:
  • NSW, Tasmania and ACT - a default decision-maker does not have power to refuse or withdraw consent to life-sustaining treatment 
  • Queensland - if a doctor considers further treatment futile and a decision-maker insists on it, an approach to the public guardian or a tribunal may be necessary. 
What happens in emergencies?
Generally doctors can provide healthcare to a person who lacks capacity without consent in an emergency situation if it is necessary to save their life, prevent serious harm to their health or prevent significant pain or distress, so long as it does not go against a valid ACD or the patient’s known wishes. 

It is good practice to make inquiries with the patient’s family or others attending with them about the existence of any ACD or other wishes about their care, subject to issues of urgency.   
 
In South Australia, a doctor must consult with another health professional and have their agreement before providing emergency treatment without consent. 

What happens if there are disputes?
What happens if you disagree with the decision-maker’s instructions, or there is disagreement amongst family or carers? 

These can be hard, stressful situations. 

For disagreements between decision-makers and the treating team, consider:
  • allowing more time, where possible
  • exploring concerns in detail
  • meetings between decision-makers, family and treating team
  • involving other doctors / health professionals for second opinions / support
  • time-limited treatment trials.
In hospital settings, involving Head of Department and / or Director of Medical / Clinical Services may be appropriate. 

If disputes remain, a public guardian / advocate may be able to assist. Some offer mediation or other dispute resolution.  In certain cases, they may be appointed guardian or approach a Tribunal or a Court for directions. 
Involving an independent, disinterested party such as a public guardian / advocate can be very helpful in challenging situations. 

If you have questions, or are dealing with a situation where you are uncertain what to do, you can contact MIGA’s claims & legal services team. 

Further resources
MIGA Australia-wide Links current at 20 April 2019

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