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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

Code of Health and Disability Services Consumers’ Rights, Right 7

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

Case: Health and Disability Commissioner’s case note 16HDC00720

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.

Code of Health and Disability Services Consumers’ Rights, Right 7(6)

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.

New Zealand Bill of Rights Act 1990, s 10

You have the right not to be subjected to medical or scientific experiments without your consent.

“Advance directives” about future treatment

Code of Health and Disability Services Consumers’ Rights, Right 7(5)

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.

Code of Health and Disability Services Consumers’ Rights, Right 7(2)

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”).

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Disability rights

Where to go for more support

COVID-19 information

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The Disabled Persons Assembly (DPA) has up-to-date COVID-19 information for the disabled community on their website. They also post new information on their Facebook page and their Information Exchange newsletter. You can sign up by going to the website linked above. For more information about DPA, see below.

Community Law

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Your local Community Law Centre can provide free initial legal advice and information.

Auckland Disability Law

www.aucklanddisabilitylaw.org.nz

www.communitylaw.org.nz/centre/disability-law

ADL provides assistance and referrals to disabled people on their legal issues, and work with other Community Law Centres, legal professionals and community organisations to raise disability awareness and achieve the best outcome for disabled people.

Office for Disability Issues

www.odi.govt.nz

The Office for Disability Issues is the focal point in government on disability issues.

Human Rights Commission

www.hrc.co.nz/your-rights/your-rights/

This page on the HRC website focuses on the Commission’s work around both individual and systemic disability discrimination. There are resources available in multiple accessible formats.

Health and Disability Commissioner

www.hdc.org.nz

Phone: 0800 11 22 33
Email: hdc@hdc.org.nz

The Health and Disability Commissioner has a range of pamphlets and other information on health and disability issues.

Contact a Health and Disability Advocate

Phone: 0800 555 050

Make a complaint to the Commissioner

Phone: 0800 11 22 33
Email: hdc@hdc.org.nz

PO Box 1791, Auckland

You can make a complaint by phoning the Commissioner’s office toll-free, by email, by filling in the online complaint form or by writing to them.

Ministry of Health Services and Support

www.health.govt.nz/your-health/services-and-support

Publicly funded health and disability services available in New Zealand.

Disabled Persons Assembly

www.dpa.org.nz

The DPA is a pan-disability organisation. DPA works to improve social indicators for disabled people and for disabled people be recognised as valued members of society. DPA and its members work with the wider disability community, other disabled persons’ organisations, government agencies, service providers, international disability organisations and the public.

People First

www.peoplefirst.org.nz

People First New Zealand is a self-advocacy organisation that is led and directed by people with learning (intellectual) disability. People First has a free Disability Information and Advice Service and they also produce legal resources in Easy Read form which are free to download from their website.

Deaf Aotearoa

www.deaf.org.nz

Deaf Aotearoa is a national organisation representing the voice of Deaf people, and the national service provider for Deaf people in New Zealand.

Deaf Aotearoa also works closely with Deaf communities, government agencies and other organisations to increase awareness, promote New Zealand Sign Language and strengthen the rights of Deaf people.

Family Violence – It’s Not OK

www.areyouok.org.nz

Phone: 0800 456 450

“It’s not OK” is a community-driven behaviour change campaign to reduce family violence in New Zealand. Its goal is to change attitudes and behaviour that tolerate any kind of family violence. The website has resources for families who are experiencing abuse. It’s not OK is an initiative housed within the Ministry of Social Development.

Family violence and disabled people

www.areyouok.org.nz/resources/free-resources/domestic-violence-and-disabled-people-accessible-formats

Inclusive Education

www.inclusive.tki.org.nz

This site provides New Zealand educators with practical strategies, suggestions and resources to support the diverse needs of all learners.

Attitude Toolbox: The Whole Truth about Courts and Justice

www.youtube.com/watch?v=m9VF9iCkXS4

This accessible video has information about the New Zealand justice system and courts. The video is presented in New Zealand Sign Language and fully subtitled in English.

New Zealand Health Practitioners Disciplinary Tribunal

www.hpdt.org.nz

This Tribunal hears and determines disciplinary proceedings brought against health practitioners.

Public Trust

www.publictrust.co.nz

Public Trust is New Zealand’s largest provider of Wills and estate administration services.

Te Rōpū Taurima

www.terooputaurima.org.nz

Te Rōpū Taurima is a kaupapa Māori service that supports people of all ethnicities with intellectual impairments around New Zealand.

Le Va

www.leva.co.nz

Le Va supports Pasifika families and communities to unleash their full potential and have the best possible health and wellbeing outcomes.

Blind Low Vision NZ

(previously called Blind Foundation)

www.blindlowvision.org.nz

Blind Low Vision NZ is New Zealand’s main provider of support to New Zealanders who are blind or have low vision.

Achieve

www.achieve.org.nz

Phone: 0800 24 33 33

Achieve is a national network established to ensure equal opportunity and access to post-secondary education and training for people with impairments.

Privacy Commissioner

www.privacy.org.nz

Phone: 0800 803 909
Email: enquiries@privacy.org.nz

You can download the pamphlet “Your Health Information: Know Your Privacy Rights” from the Privacy Commissioner’s website, at: www.privacy.org.nz

You can also download a copy of the Health Information Privacy Code from: www.privacy.org.nz/the-privacy-act-and-codes/codes-of-practice/health-information-privacy-code-1994

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