Donating organs: Who decides

Overview

While decisions about your burial or cremation are made by your “personal representative” (the executor under your will or, if you don’t leave a will, your closest relative), a different legal framework exists for organ donation under the Human Tissue Act 2008. This Act gives priority to any informed decision you had made while you were alive, but allows your family to give consent to – or object to – organ donation if you hadn’t made any decision. In this area the personal representative plays only a facilitating role, not a decision-making one.

Note: Another step you could consider is to make an “advance directive” about future medical treatment should you lose the ability to make decisions. These are sometimes also called “living wills”. For information, see the chapter “Health and disability”, under “The Code of Health and Disability Services Consumers’ Rights” (Right 7).

Summary of the decision-making hierarchy

Human Tissue Act 2008, s 31

The Human Tissue Act sets up a hierarchy of people who can give legally valid consent, or make a legally valid objection, about organ donation:

  • At the top is the deceased person – the doctors will first need to find out if the deceased consented or objected to organ donation before they died.
  • If the deceased hadn’t made any decision, and hadn’t appointed someone to decide for them after their death, then the immediate family decides together.
  • If there’s not a decision from the immediate family, then any close relative can decide – but their consent can also be overridden by another close relative.

However, although the deceased is formally at the top of this hierarchy, in practice things are different. The Human Tissue Act lets the doctors decide not to act on consent given by the deceased, and doctors have usually always used that freedom to choose not to go ahead with organ donation if the family oppose or are distressed about it.

Note: Unlike some other countries, New Zealand doesn’t have a national register for recording people’s consent to being an organ donor. Driver’s licence information is the closest thing we have to a register. But having “Donor” on your licence doesn’t of itself count as giving informed consent to organ donation – this just indicates to medical staff that you’re a potential donor, and from there they will ask your family if they know if you had clearly given or refused consent, apart from your driver’s licence. In the same way, saying no to being recorded as a donor when you apply for your licence or renewal doesn’t count as an informed objection.

Consent to organ donation: The decision-making hierarchy

First level: A decision by the deceased

Human Tissue Act 2008, ss 14, 16-18, 31(2)(a)

The doctors will ask your family if they know what your views were about organ donation. If you had given informed consent by recording it in writing or telling two witnesses about it (a driver’s licence doesn’t count), that gives the doctors the legal power to use your organs. But if you had decided you didn’t want to be an organ donor (again, by writing down the decision or telling two witnesses), then that stops everything and the doctors can’t use your organs.

Although your informed consent allows the doctors to go ahead with organ donation, they’re legally required to take into account the views of your immediate family/whānau and their cultural and spiritual needs, values and beliefs. If your family aren’t happy with your organs being used, then in practice the doctors almost always treat their wishes as most important and don’t go ahead with donation.

The family can’t legally override an informed decision that you had made to not be an organ donor. However, simply choosing not to have “Donor” on your driver’s licence doesn’t count as an informed objection. So legally the family can override that and give valid consent to organ donation, and the doctors can act on that consent. What’s recorded on a driver’s licence doesn’t have any legal status as a record of your wishes – it’s only a general indication that you’re a potential organ donor.

Human Tissue Act 2008, s 15

If your family aren’t aware of any decision you’d made about this, or of you choosing someone to make decisions for you (a “nominee”), then the decision is up to your immediate family/whānau – or, if they can’t agree, on any of your close relatives (see the next three headings).

Note: If the doctors approach your “personal representative” (your executor under your will or your closest relative) for help in finding out about any decision that you or your family has made, the personal representative must do everything reasonably practicable to help.

Second level: A decision by the deceased’s “nominee”

Human Tissue Act 2008, ss 31(2)(b), 39

If you had appointed someone to make decisions for you about organ donation after your death, called your “nominee”, then that person’s consent or objection counts the same as if you had made a decision – so long as the nominee’s decision is an informed one and meets the other rules that apply to consent and objections under the Human Tissue Act (see below, “When consent to organ donation is valid”).

You have to record or communicate your appointment of a nominee in the same way as for consenting or objecting yourself – that is, by writing it down or telling two witnesses verbally.

You can appoint more than one nominee. In that case, the standard rule is that your nominees all have to consent together in order for their consent to be valid, but that an objection from any one of them will count as a valid objection and prevent organ donation going ahead. However, you can specify different rules about this when you nominate them – for example, you can decide that any one of them can validly consent or object, or you can decide that any consent or objection has to be by all of them to be valid.

Human Tissue Act 2008, ss 37, 38

People under 16 can’t choose a nominee. If you’re under 16 when you die, your parents or guardians will make decisions about organ donation.

Protection of Personal and Property Rights Act 1988, s 106

Note: Any person to whom you’ve given an enduring power of attorney won’t have power to make decisions about organ donation after you die. This is because the attorney’s powers come to an end on your death. (For more details see the chapter “Elder care and powers of attorney.)

Third level: Decision by immediate family/whānau

Human Tissue Act 2008, ss 31(2)(c), 35, 40

If you hadn’t made any decision (and hadn’t appointed a nominee, or your nominee isn’t available), then the doctors will need general agreement among your immediate family to be able to go ahead with organ donation. The consent is given by a single member of your immediate family on behalf of the rest of the family – that person has to do everything that’s reasonably practicable to consult with and get general agreement from family members who represent all the different interests of the immediate family. That family member then can only consent (or object) on the immediate family’s behalf if he or she believes on reasonable grounds that all immediate family members agree with this – or would agree if they were consulted personally.

Your “immediate family” includes your spouse or partner, children, parents, grandparents, brothers and sisters, step-children, step-parents, and step-brothers and step-sisters. It also includes any other member of your family, whānau or other culturally recognised group who either was in a close relationship with you or had responsibility for your welfare according to your community’s customs and traditions.

Final level: Decision by a single close relative

Human Tissue Act 2008, ss 9(3), 10, 31(2)(d), 36, 41

If there’s not a collective decision from your immediate family, or if it would take too long to get one, the doctors can act on consent given by a single close relative. In the same way, an informed objection from any close relative stops the process, even if another close relative has already given valid consent.

A “close relative” means:

  • your spouse or partner, or
  • if you didn’t have a spouse or partner, then any of your children who are 16 or older, or
  • if there’s no spouse/partner or children who’ve turned 16, then one of your parents, or
  • if there are none of those people, any of your brothers or sisters.

If you’re under 16 when you die, then a “close relative” means:

  • one of your parents, or
  • if your parents aren’t available, any brother or sister who’s 16 or older.

    Human Tissue Act 2008. s 22

    Note: It’s a criminal offence for medical staff to use a person’s organs if the proper consent hasn’t been given. They can be jailed for up to one year or fined up to $50,000.

When consent to organ donation is valid

Consent or objection must be free, informed and specific

Human Tissue Act 2008, ss 9, 27

Your decision must have been given freely, and it must also be an “informed” decision, which means you have to have all the information that a reasonable person would need in your situation.

The kinds of information you’d need would probably include things like: what the process would be for confirming that you were in fact dead; how your organs or other tissues would be used; the effect the transplant procedure would have on your body’s physical appearance; and whether it will delay your funeral.

The doctors are entitled to assume that any consent you gave was free and informed, unless they’re aware of evidence that it wasn’t free and informed.

Your consent or objection must also be specific about the particular type or types of use it relates to – for example, donating organs for transplants, or using your body or organs for medical research, or both.

Human Tissue Act 2008, s 54

Note: When the doctors remove organs from your body, they have to avoid disfiguring it unnecessarily.

The form of your consent or objection

Human Tissue Act 2008, s 43

For your consent (or objection) to be legally valid, either:

  • it must be in writing, or
  • if it’s not in writing, you have to tell two witnesses, who must be there together at the same time.

So legally you don’t have to put your consent in writing, and if you do put it in writing you don’t have to have witnesses. But it’s a good idea to put it in writing anyway, and to have witnesses when you sign this document; your witnesses will be able to confirm later on for the doctors and others that you were mentally capable when you made the decision, and that you had all the information you needed.

Human Tissue Act 2008, s 9(1)(a), (2)(a)

Although legally you can record your decision in your will, the national organisation Organ Donation NZ says that by the time your will is read it will normally be too late to provide organs for transplant. So it’s best to put your decision in a separate document that your family or friends will have access to, not in your will.

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