The introduction of the Medical Treatment Planning and Decisions Act 2016 means people with dementia still can have a say about how they are treated, long after their memory starts showing signs of failing. For example, if you can no longer swallow do you want to be fed through your stomach? And if you get pneumonia do you wanted to be aggressively treated or let the illness take its course? People can also leave instructions asking they receive treatment in certain circumstances, such as a young person with a severe disability who wants to make it clear they do want to be resuscitated to save their life.

Significantly, new “instructional directives” providing specific instructions about the treatments a person consents to or refuses will not be able to be overruled by family members. “People might have concerns that their family will disagree with their wishes for end-of-life care, and the Act addresses this. It allows individuals to make a directive they know will be respected by their medical practitioner regardless,” said Acting Health Minister Martin Foley. Mr Foley said people of any age with decision-making capacity could make a legally-binding advanced care directive, which would need to be witnessed by two people, including a medical practitioner (in the case of children, a doctor with expertise in capacity in children). Anyone who is found to have coerced someone into making an advanced care directive could face up to five years in prison. Rosa Bazzanella, a will and estates specialist with Rigby Cooke Lawyers, said doctors who ignored instructional directives could also end up facing disciplinary proceedings.

“If they are aware of an advanced care directive and ignore it, it’s professional misconduct, even if it is an emergency,” she said. “The only time they’re going to get off, is if they act in good faith at a time when they’re under pressure, and they have to act to save a life.” Also included in the new laws are values directives, where people can describe what is important in their life, including their religious beliefs. “It can be really idiosyncratic what people do and don’t want,” said Odette Waanders, chief executive of Palliative Care Victoria. “Some people will say ‘If I can eat ice cream and watch TV you can do anything to me’,” she said.

“Others will say ‘unless I can feed myself I’m not interested’. “The values directive is a really valuable tool, so that people are not suddenly in the crisis situation not knowing what you would want.” Despite Victoria’s historic vote to legalise euthanasia from next year, people will not be able to include a wish for lethal medication in an instructional directive. This means that people with dementia remain ineligible for euthanasia. Victorians will also not be able to make a legally-binding request to donate their organs, with DonateLife Victoria instead suggesting that people ensure they are registered with the Australian Organ Donor Register and talk to their family about their wishes.