Imagine you are diagnosed with cancer. As awful as that is, you look into the side-effects of chemotherapy and decide they are even worse. You tell your doctor you don’t want the treatment, but she says you are having chemotherapy whether you like it or not.
She says without chemotherapy you might die and, if necessary, she’ll keep you locked up in hospital to make sure you get it. Fortunately, this could never happen in Australia. When it comes to general illnesses – such as cancer, heart disease or appendicitis – the law does not allow a doctor to force patients into treatment they competently refuse.
If you understand what is involved and can weigh up the risks and benefits of your choice, you can refuse medical treatment even if you could die as a result. People competently refuse chemotherapy, renal dialysis or operations quite often. They may do so for any any number of reasons, such as not agreeing with their diagnosis or not liking the idea of medications.
However, until very recently, it has been a different story for mental illness. Until 2013, laws in every Australian state and territory allowed forcing people to have psychiatric treatment if it was thought necessary to protect them from serious harm – even if they competently refused it.
What is competence?
Historically, forcing mentally ill patients into treatment was likely a combination of misunderstanding and prejudice. Early laws relating to mandatory psychiatric treatment were written in statutes that allowed the operation of asylums – institutions that, while aiming to provide asylum and care, also deprived people with mental illness of many personal liberties.
The idea of competence in making medical decisions was expressed as “being of sound mind”. This definition would have blurred into early conceptions of mental illness. Today, our understanding of what constitutes competent ability to make decisions has evolved.
As a starting point, doctors assume all adults are competent in making decisions. But if there is reason to doubt this, and if refusing treatment could have serious adverse consequences, they will assess a patient’s competency.
The standard way of assessing a patient’s understanding of what the proposed treatment involves is to ask them to paraphrase back to the doctor any information relevant to their decision.
Testing a patient’s ability to weigh up the risks and benefits is a little trickier. Doctors will talk to the patient about how they came to their decision and gauge whether their approach to the issue fits in with the range of ways people usually come to decisions. The patient’s approach does not need to be sensible, rational or wise, but it does need to be “understandable” in a broad sense of the word.
Until 2013 in Australia, people who competently decided they did not want treatment for their schizophrenia, for example, could be placed on a legal order and forcibly injected with medication. That they understood information relevant to their treatment and could weigh it up wasn’t relevant.
Obviously this was discriminatory and something had to change.
Tasmania, South Australia, Western Australia and Queensland have changed their mental health acts so people have the same right to competently refuse psychiatric treatment as they do other medical treatment. Their psychiatrists can try persuade them to have it, of course, but they can’t force them.
But governments in the Australian Capital Territory, New South Wales and Victoria have taken a slightly different path. In these jurisdictions, it is still possible to force a person with mental illness to have treatment if they competently refuse it.
However, in each, there are a series of legal hoops to jump through that should mean this will only happen rarely. In NSW, for example, doctors must now make “every effort reasonably practicable” to obtain a mentally ill person’s consent to treatment. This means doctors have to try their utmost to negotiate a way forward without resorting to involuntary treatment.
In the legal changes, governments have responded to Australia’s decision to sign up to the United Nations Convention on the Rights of Persons with Disabilities in 2008. The convention demanded changes to laws that discriminated against people with disabilities, including mental illnesses.
Australia has been ahead of the pack in making those changes. The United Kingdom and New Zealand are yet to make any amendments to their mental health laws. The United States has not even ratified the convention. We are doing well, but we need to do more.
Legal orders that allow doctors to force people with mental illness into treatment outside hospital are called community treatment orders (CTOs). Some Australian states, particularly Victoria and NSW, use CTOs more than anywhere else in the world.
The changes in the law should mean that significantly fewer CTOs are made because people well enough to be living in the community will often be well enough to make competent treatment decisions.
However, if fewer CTOs are being imposed now, that is not yet obvious in official figures. We need to keep track of these figures and make sure tribunals are applying the law, even when tribunal members worry patients might be more likely to become unwell again.
The actual likelihood a person will harm themselves is generally quite low. Although those who have experienced previous suicide attempts or are in crisis have a greatly increased probability of suicide compared with the general community, fewer than one in 200 will actually die by suicide in the next six months.
Of course, professionals must still be cautious as it impossible to usefully gauge the exact risk of harm. Understandably, they want to keep people safe.
But the decision whether someone is competent, or whether a doctor has made “every effort reasonably practicable”, allows a degree of wriggle room. If doctors and tribunals remain paternalistic, they can likely use the grey zones of the new laws to justify decisions to protect people from themselves.
Simply changing a law does not necessarily change people’s behaviour, which needs changes in culture. Doctors have been forcing people with serious mental illnesses to have treatment despite their competent refusal for decades. They did it with the best intentions and the law allowed it. But the law has changed and we need to make sure doctors and tribunals that authorise these orders change too.
Australia is leading the world in its efforts to give people with mental illnesses the rights everyone else enjoys. Though the reforms are not perfect, they are an important first step. Now we must make sure these legal changes translate into real change in people’s lives.