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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 (sometimes called “withdrawing 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,” 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 that 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) New Zealand Bill of Rights Act 1990, s 10

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

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

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 your brother tells the doctor that you had once said to him, “If I was ever in that state, I wouldn’t want a blood transfusion,” the doctor would probably still administer a blood transfusion.

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
  • 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: “Mental health”).

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Disability rights

Where to go for more support

Community Law

Your local Community Law Centre can provide you with free initial legal advice.

Find your local Community Law Centre online: www.communitylaw.org.nz/our-law-centres

Auckland Disability Law (ADL) provides free legal services to disabled people associated with their disability related legal issues. ADL is the only specialist disability law community law centre in Aotearoa New Zealand.

Website: www.aucklanddisabilitylaw.org.nz/
Email: info@adl.org.nz
Phone:  09 257 5140
Text only: 027 457 5140

Disabled Persons Assembly

DPA is a pan-disability organisation run by and for disabled people. DPA and its members work with the wider disability community, other disabled persons’ organisations, government agencies, service providers, international disability organisations and the public.

Website: www.dpa.org.nz
Email: info@adl.org.nz
Phone:  04 801 9100
Facebook: www.facebook.com/dpa.nz.7

Nationwide Health & Disability Advocacy Service

The Nationwide Health & Disability Advocacy Service offers free, independent, and confidential advice to support you in resolving issues with health and disability services.

Website: www.advocacy.org.nz
Email: advocacy@advocacy.org.nz
Phone:  0800 555 050

Le Va

Le Va is working with Manatū Hauora/Ministry of Health to support Pasifika people with disabilities and their families.

Website: www.leva.co.nz/our-work/disability-support
Email: admin@leva.co.nz
Phone:  09 261 4390
Instagram: www.instagram.com/Levapasifika
Facebook:  www.facebook.com/LeVaPasifika

Te Rōpū Taurima

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

Website: www.terooputaurima.org.nz
Email: info@terooputaurima.org.nz

People First New Zealand

People First New Zealand is a self-advocacy organisation that is led and directed by people with learning disabilities.

Website: www.peoplefirst.org.nz
Email: ask@peoplefirst.org.nz
Phone:  0800 20 60 70

Deaf Aotearoa

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

Website: www.deaf.org.nz
Email: hello@deaf.org.nz
Phone:  0800 33 23 22
Freetext:  8223
Instagram: www.instagram.com/DeafAotearoa
Facebook: www.facebook.com/deafaotearoanz

Blind Low Vision NZ (previously called Blind Foundation)

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

Website: www.blindlowvision.org.nz
Email: generalenquiries@blindlowvision.org.nz
Phone:  0800 24 33 33
Instagram: www.instagram.com/BlindLowVisionNZ
Facebook:  www.facebook.com/BlindLowVisionNZ

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

Website: www.achieve.org.nz
Email: info@achieve.org.nz
Phone:  03 479 8235

Inclusive Education

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

Website: www.inclusive.tki.org.nz
Email: inclusive@tki.org.nz

Government Agencies

Whaikaha/Ministry for Disabled

Whaikaha is the Ministry for Disabled People. On the website, it contains information about how to access support and funding and has a directory of advisory services.

Website: www.whaikaha.govt.nz
Email: contact@whaikaha.govt.nz
Phone:  0800 566 601
Text: 4206
Communication can also be made through NZ Relay Calls

Health and Disability Commissioner

The Health and Disability Commissioner website sets out your rights under the Code of Health and Disability Services Consumers’ Rights and how you can make a complaint to the Commissioner.

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

To make a complaint online: www.hdc.org.nz/making-a-complaint/make-a-complaint-to-hdc

Office for Disabled

The Office for Disabled is administered by a small team from Whaikaha, and works closely with government agencies and the disability sector to make the best decisions for disabled people.

Website: www.odi.govt.nz
Email: office_for_disability_issues@whaikaha.govt.nz
Phone:  0800 566 601

Ministry of Health Services and Support

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

Te Kāhui Tika Tangata/Human Rights Commission

The Human Rights Commission website provides information about human rights in Aotearoa and outlines how you can make a complaint to the Commission about individual or systemic disability discrimination.

Website: www.tikatangata.org.nz/ or www.hrc.co.nz
Email: infoline@hrc.co.nz
Phone:  0800 496 877 (0800 4 YOUR RIGHTS)

To make a complaint online, download a complaint form or find out more about the complaints process: www.tikatangata.org.nz/resources-and-support/make-a-complaint

Privacy Commissioner

The Privacy Commissioner website provides information about your rights and responsibilities under the Privacy Act 2020 and the Privacy Principles. It also outlines the role of the Privacy Commissioner and how to make a privacy complaint.

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

To make a complaint: www.privacy.org.nz/your-rights/making-a-complaint

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