Health and disability services: Your rights and how to enforce them
Agreeing to treatment or services: The issue of “consent”
Informed choices and giving informed consent
You can only be provided with disability services if you’ve made an informed choice and given informed consent. You can change your mind at any time or “withdraw your consent”.
Example: No informed consent
A man in his mid-sixties had a stroke and was transferred to a rest home after a spell in hospital. The hospital had assessed him as needing help with all of his everyday living activities, which would include hoist transfers and a specialised wheelchair.
He’d signed an enduring power of attorney (EPA) for personal care and welfare in favour of his sister, which meant that if he lost the ability to make decisions for himself, or to communicate his decisions to others, his sister would legally have the power to make these decisions. But when he went into the rest home, he was still “mentally capable” and so the EPA hadn’t started operating.
The special wheelchair he needed wasn’t available at the rest home and so the rest home used a recliner chair instead. The GP at the rest home signed a “physical restraint/enabler form” and his sister also signed the form agreeing to the use of “the chair”. The rest home used a canvas belt to secure the man in the chair, but the rest home couldn’t show any evidence it had consulted the man himself about having the belt tied around him. Later the man was twice found on the floor – he told the staff he’d slipped down onto the floor and that the chair’s footrest kept sliding down. He refused to be put into the chair again.
The Health and Disability Commissioner investigated after a complaint from the man’s daughter. The HDC found the rest home had breached the man’s rights under the Code of Rights because it hadn’t gotten his informed consent to restraining him with the canvas belt. He might have agreed implicitly to being in the recliner chair initially, but he never agreed to the belt.
The Health and Disability Commissioner also said the rest home had breached its duty under the Code to provide services with reasonable care and skill, because it hadn’t checked whether he was able to make his own decisions and whether the EPA had been activated, and its processes for using restraints weren’t adequate.
The HDC asked the rest home to apologise to the man, to train its staff properly about informed consent, EPAs and using restraints, and to check all the current residents’ files to make sure things were being done properly.
When does my consent have to be in writing?
In some cases, your consent for disability services has to be in writing, otherwise it’s not legally effective.This is when:
- your treatment involves a significant risk, or
- you’ll be under a general anaesthetic, or
- you’re part of research or experimental treatment.
You’re assumed to be capable of giving informed consent, unless there are reasonable grounds for believing you’re not capable.
You have the right to say which particular health professional you want to treat you, and your preference has to be met if this is practicable.
You have the right not to be subjected to medical or scientific experiments without your consent.
“Advance directives” about future treatment
Every person has the right to make and use an “advance directive” to make their wishes known about the kinds of medical treatment they do or don’t want to receive if they lose the ability to give informed consent – for example, if they’re in a coma as a result of an accident. These are sometimes also called “living wills”.
For example, when you have surgery, you’re often asked to sign a form consenting to life-saving treatment if it’s necessary. This is a kind of “advance directive”, although it’s not normally called that.
Another important type of advance directive is one given to say when you don’t want something done. For example, if you’re terminally ill, you might let doctors know you don’t want to have life-saving or life-prolonging treatment. Lawyers sometimes call this an “anticipatory refusal of consent”.
Doctors have to follow advance directives. However, doctors will also usually be cautious here, and will make sure your advance directive is valid and applies specifically to the situation at hand before they follow it.
In those situations, doctors will look at these key factors:
- whether you were competent to make this decision at the time you made the advance directive
- For example, if you already had an advanced terminal illness, they’ll look at whether the illness had affected your decision making ability, perhaps through depression or some more direct physical effect.
However, the law also presumes that you were competent to make the decision, unless there are reasonable grounds for deciding otherwise.
- whether you were free from pressure (“undue influence”) from others
- whether you were properly informed about the issues or choices involved
- whether you intended your advance directive to apply to the particular situation at hand and the kind of treatment the doctors are proposing – for example, the doctors might decide your directive isn’t specific enough for them to be sure about this.
Your doctors can decide not to follow your advance directive if there’s a reasonable doubt about one of those four key factors. But otherwise they have to follow it – they can’t just ignore it because they disagree with your decision.
How do I make an advance directive?
Although an advance directive doesn’t have to be in writing, it’s highly recommended that it is. Doctors will be extremely cautious about supporting verbal statements that have been reported to them by family members – for example, if you had once said something like “If I was ever in that state, I wouldn’t want to be kept alive.”
So while advance directives can be made verbally, it’s much better to put them in writing. It’s also a good idea to involve the doctor you’re most familiar with, usually your GP, when you make it. Involving your doctor has several advantages, such as:
- providing a witness,
- help ensure that you’re well-informed about the choices involved
- help ensure your directive is specific and accurate enough to be legally effective, and
- provide some protection from the possibility of any unfair pressure or influence from others.
It’s a good idea to review your advance directive from time to time, again with your doctor’s involvement.
When you can be treated without your consent
In general, you can’t be given any medical treatment or other health or disability services if you haven’t given real, informed consent to it. But this isn’t necessary in an emergency or some other exceptional case – for example, if you’re unconscious after an accident and no-one else who’s entitled to give consent on your behalf is available.
There are also some special cases where the law says you can be treated without your consent, such as when you’re being assessed or treated under the Mental Health (Compulsory Assessment and Treatment) Act 1992 (see the chapter “Mental health”).