The End of Life Choice Act
The End of Life Choice Act 2019 proposes to legalise ‘assisted dying’, a euphemism for voluntary euthanasia and assisted suicide.
It’s about only one end-of-life choice: the administration of a lethal dose of medication.
During the October 2020 general election there was a binding referendum on whether the End of Life Choice Act should come into force (start to operate as law).
There are good reasons why even people who support ‘assisted dying’ in principle needed to vote “no” to this particular Act. The End of Life Choice Act lacks important safeguards which are included in overseas laws.
Scroll down for some key issues with the End of Life Choice Act.
Which choices would the End of Life Choice Act legalise?
- A Curia Market Research Poll found that most Kiwis are confused about which end-of-life choices the End of Life Choice Act would legalise.
- The End of Life Choice Act is NOT about making it legal to turn off life support machines; to make a ‘do-not-resuscitate’ request (no CPR); or to stop medical treatment. These end-of-life choices are already legal and not euthanasia. In these situations, a person would die of natural causes – from their underlying medical condition. Read more here about the ethical differences.
- The End of Life Choice Act is NOT about pain relief. It’s already legal for a doctor to give a person enough medication to address their pain and other symptoms, even if this may hasten their death as a side effect.
- The End of Life Choice Act would NOT allow a person to die any way they want. It’s about only one means of death: a lethal dose of medication. either administered by a medical or nurse practitioner, or given to the person to self-administer.
- The End of Life Choice Act proposes four methods for the administration of a lethal dose: ingestion or intravenous delivery triggered by the person (assisted suicide); and ingestion through a tube or injection (euthanasia).
- The End of Life Choice Act would NOT make it legal to end one’s own life, because the law already allows a person to do so. Suicide is not illegal. The Crimes Act 1961 doesn’t prohibit suicide, only assisting in someone else’s suicide. It is suicide when a person intentionally ends their own life without assistance.
- Although the End of Life Choice Act doesn’t mention the words “euthanasia” and “assisted suicide”, these practices are what the Act aims to legalise. A death is assisted suicide when a person has received help to end their own life, for example, to access a deadly dose to swallow or self-administer. It is assisted suicide when the person who died took the final action that ended their life.
- It is euthanasia when someone else takes the final action that ends the person’s life, for example by administering a lethal injection.
Lack of Safeguards
- No independent witnesses are required at any point in the process to confirm that the person was not pressured by the doctor or anyone else. (The doctor or nurse practitioner is not an independent witness.) If a person changed their mind but the doctor or nurse practitioner administered the lethal dose anyway, nobody else may know.
- The End of Life Choice Act lacks enforceable safeguards against pressure. Only the first doctor needs to “do their best to ensure that the person expresses their wish free from pressure” and stop the process if pressure is suspected. A person may experience pressure before they express their wish and without the doctor’s knowledge. This doctor doesn’t need to talk to the person face-to-face and doesn’t need to have met the person before. The doctor is permitted to speak only to family members who have been approved by the person. An abuser may be a friend or caregiver, or may be a family member who prohibits the person from giving the doctor permission to speak to them.
- The Act prohibits a health practitioner from initiating a discussion on assisted dying with a patient, but there are loopholes:
- The health practitioner may not initiate a discussion while proving a health service to the person. There’s nothing against doing so before or after providing the service, or against a non-health professional doing so.
- The Act prohibits only those discussions that are specifically about “assisted dying under this Act”. The Act does not prohibit a health practitioner from discussing assisted dying in general or making a general suggestion to a person that they have lived long enough.
- Even if a health professional were to initiate a discussion with a patient they were not supposed to have, they would not commit a criminal offence (punishable by either imprisonment or a fine) but would face only the possibility of disciplinary action from a professional body.
- This safeguard is unenforceable because there is no requirement for independent witnesses to be present during the process. The only witness to a health practitioner’s pressure may be the victim who died.
- No written evidence is required to show that a person confirmed their death wish before receiving the lethal dose and that they were considered mentally competent when doing so.
- A person doesn’t need to certify that they have asked someone else to sign the request on their behalf. The form needs to be signed in the person’s “presence”, but the meaning of “presence” is not defined in the Act.
- The person signing the form might readily claim that they don’t “know” for certain that they stand to gain from the death even if they may be likely to inherit. The form could be signed by someone who is pressuring the person to request death. There is also no protection against a person being pressured to sign the form on someone else’s behalf.
- Unlike some overseas assisted dying laws, the End of Life Choice Act does not require that thetwo medical practitioners assessing a person’s eligibility for euthanasia need to have any training or experience in the field of medicine related to the person’s condition.
- Even a provisionally-registered doctor, fresh out of medical school with provisional registration, could be an attending medical practitioner (the first doctor in the process).
Lack of Oversight
- No independent witnesses are required at any point in the process. No witnesses are required when a person confirms whether they still want the death to go ahead or when the lethal dose is administered. The Registrar and Review Committee cannot verify that the information entered on a form reflects what really happened.
- The poacher may also be the gamekeeper: The two health practitioners on the Review Committee could be reviewing a case which they were both personally involved in.
- Nobody would be responsible for following up missing assisted death reports.
- Nobody would be responsible for reviewing all the forms pertaining to a particular case. Nobody needs to check whether the report completed after the death contradicts information on the forms completed before the death. Contrary to the Review Committees in the Netherlands, the Review Committee set up by the End of Life Choice Act would receive only the ‘assisted death report’ and no information about the person’s medical records.
- No evidence is required that a nurse practitioner who administered a lethal dose was authorised to do so.
- There is no requirement to monitor how much of the drugs were administered or to monitor what happened to any leftover drugs. Nobody needs to certify that prescriptions have actually been destroyed if they were no longer required. It would be up to the doctor or nurse practitioner to self-report that they have done so, without any witnesses.
Issues with Eligibility
- An eligible person needs to have New Zealand citizenship or permanent residence, but does not need to be physically living in New Zealand. The End of Life Choice Act will therefore allow some death tourism. This is not the case in the USA or Australia.
- An eligible person can be as young as 18. However, the prefrontal cortex of the brain, which is responsible for decision-making, continues to mature until the mid-twenties.
- The End of Life Choice Act states that an eligible person would have a terminal illness that is likely to end their life within 6 months”.However, ‘terminal illness’ is not defined in the End of Life Choice Act. It could be interpreted to include any condition that is life-limiting or life-threatening. There is no bright line between terminal conditions and chronic conditions. Some chronic conditions can become life-threatening in a matter of minutes, for example, diabetes, asthma, severe allergies and high blood pressure. There is also no bright line between terminal illness and disabilities, because some disabilities are life-limiting and involve complications that can become life-threatening. Even clinical depression could be regarded as a terminal condition by some, because it could lead to death (suicide), or to losing the will to live and fight a disease.
- The “6 months” prognosis is arbitrary. Do people with 6 months to live suffer more than people with 7 months, or a year, or 10 years, to live? Not necessarily.
- In Oregon, “a terminal illness that is likely to end the person’s life within 6 months” means that a person is likely to die within six months if the condition is allowed to take its course without medical treatment. For example. a person with Type 1 diabetes with decades to live, could become terminal with weeks to live by stopping insulin. In Oregon eligible conditions have included diabetes, heart disease, hepatitis, sclerosis, arteritis and arthritis.
- Diagnosis and prognosis can be wrong. It’s impossible for doctors to accurately predict how long a person will live, especially as far as six months out. There have been cases of people who were expected to die within hours or days, but they recovered and lived for months or years. Diagnosis can also be wrong, despite a doctor’s best intentions. Diagnosis and prognosis are not based on certainty, but on probability (the likelihood based on other cases). There is no guarantee that an individual’s disease will progress at the same rate as it has in other people’s bodies.
- The End of Life Choice Act discriminates on the ground of disability and targets disabled people:
- In order to be eligible, a person needs to have a terminal illness as well as a worsening physical disability. (The Act states that an eligible person needs to be “in an advanced state of irreversible decline in physical capability”. A ‘decline in physical capability’ is another way of describing a ‘worsening physical disability’.)
- In order to be eligible, a person’s decline in capability does not need to be related t9o their terminal illness.
- The Act doesn’t define what is meant by ‘capability’. Might a person be “in an advanced state of irreversible decline in physical capability” if they have become less able to run, walk or read? Might a person’s ‘decline in capability’ become ‘irreversible’ simply because they choose to refuse available medical treatment?
- The End of Life Choice Act does not limit euthanasia and assisted suicide to a last resort. There’s no requirement that a person tries available treatments or palliative care before requesting a lethal dose.
- The Act allows for an eligible person’s “unbearable suffering” to be unrelated to their medical condition. A person may wish to die because they are suffering from homelessness, poverty, a lack of assisted living support, or because they are a victim of abuse. In contrast, Victoria’s euthanasia law specifies that a person would be eligible only if their suffering is caused by their terminal condition.
- The End of Life Choice Act provides no protection for terminally ill people who also suffer from depression or a mental illness.
- The Act specifies that a person cannot be eligible on mental health grounds alone, but a person with a terminal illness as well as a mental illness is not excluded.
- Under this Act a person could have a mental illness and still be “competent to make an informed decision”.
- The End of Life Choice Act doesn’t mention or exclude depression. There is no requirement to be screened for treatable depression.
- Depression can be hidden, even from doctors. Depression can be misdiagnosed or dismissed as ‘understandable depression’. Since clinical depression is diagnosed when a person has had relevant symptoms for at least two weeks, even subclinical depression may affect a person’s decisions.
Section 5: Meaning of person who is eligible for assisted dying
In this Act, person who is eligible for assisted dying means a person or eligible person means a person who—
(a) is aged 18 years or over; and
(i) a person who has New Zealand citizenship as provided in the Citizenship Act 1977; or
(ii) a permanent resident as defined in section 4 of the Immigration Act 2009; and
(c) suffers from a terminal illness that is likely to end their life within 6 months; and
(d) is in an advanced state of irreversible decline in physical capability; and
(e) experiences unbearable suffering that cannot be relieved in a manner that the person considers tolerable; and
(f) is competent to make an informed decision about assisted dying.
(2) A person is not a person who is eligible for assisted dying by reason only that the person—
(a) is suffering from any form of mental disorder or mental illness; or
(b) has a disability of any kind; or
(c) is of advanced age.
Section 6: Meaning of competent to make an informed decision about assisted dying
In this Act, a person is competent to make an informed decision about assisted dying if the person is able to—
(a) understand information about the nature of assisted dying that is relevant to the decision; and
(b) retain that information to the extent necessary to make the decisions; and
(c) use or weigh that information, as part of the process of making the decision; and
(d) communicate the decision in some way.
Lack of Freedom of Conscience Rights Protection
- A doctor with a conscientious objection would be obliged to tell the person that they can ask the SCENZ Group for the contact details of a willing practitioner. This is a form of referral, which the World Health Organisation regards as unethical.
- A doctor who believes an assisted dying request is motivated by a mental illness would still be forced to steer the person towards death. The doctor would have only two options: to continue with the process themselves or to direct the person to the SCENZ Group who would continue the process. The Act does not allow a doctor to refuse an assisted dying request for clinical reasons.
- Doctors who work as contractors would not be protected from discrimination in the workplace if they opt out of the euthanasia process.
- There would be no protection for people who are not registered as health practitioners. A healthcare assistant, caregiver, receptionist or cleaner who is pressured to assist a person, for example by signing the form on a person’s behalf, would not be allowed any freedom of conscience rights protection.
- The End of Life Choice Act offers no explicit protection for organisations such as rest homes and Hospices. MP Michael Woodhouse’s proposed amendment to that effect was voted down by Parliament. Hospice New Zealand is concerned about the End of Life Choice Act. In response to their request for clarification on the application of the Act, the High Court confirmed that euthanasia has no place in palliative care.
History of the End of Life Choice Act 2019
- The End of Life Choice Bill was drawn from the Member’s Ballot on 8 June 2017.
- The Attorney-General published a report on whether the End of Life Choice Bill is in line with the New Zealand Bill of Rights Act and found that it discriminates on the basis of age.
- The first reading on the Bill passed with 76 votes in favour and 44 votes against on 13 December 2017. MP Simon O’Connor requested that every MP who wishes to speak would be allowed to do so, but another MP objected.
- Parliament’s Justice Committee accepted submissions from the public until 6 March 2018.
- The Committee considered 39,159 submissions – the most Parliament has ever received on any bill or issue. The Committee heard oral evidence from 1,350 submitters (77 organisations and 1,273 individuals) at hearings in Whangarei, Auckland, Tauranga, Rotorua, Hamilton, New Plymouth, Whanganui, Napier, Palmerston North, Wellington, Nelson, Christchurch, Dunedin, and Invercargill. See page 9 of their report.
- A full analysis of the written submissions revealed that over 90% of submissions were opposed to the End of Life Choice Bill. Over 93 % of submissions from health professionals were opposed. Over 90% of total submissions made no reference to religious arguments.
- An analysis of all the published oral submissions found that 85% were opposed to the Bill and contrary to claims, 79 % made no reference to religious arguments.
- The Committee’s report on the End of Life Choice Bill was published on 9 April 2019.
- The Committee of the House stage started on 31 July with a debate on Part 1 of the Bill.
- Part 3 was debated on 11 September.
- Disabled people petitioned Parliament in support of Supplementary Order Paper No 381. The petition requested that disabled people and others be given the choice to receive services only from health professionals who don’t engage in ‘assisted dying’. The amendment was rejected by Parliament.
- Part 4 of the Bill was debated on 25 September.
- Clauses 1 (title) and 2 (commencement) were debated on 23 October. Parliament decided (63 votes in favour and 57 opposed) that if the bill were passed by Parliament, there would be a binding referendum to decide whether the Bill would come into force a year later.
- In total, 114 Supplementary Order Papers were proposed. Only three passed (the one proposed by David Seymour and the two on the referendum proposed by Jenny Marcroft). Of the 111 amendments that were rejected, 110 were from opponents to the Bill.
- On 13 November 2019 Parliament voted 69 votes to 51 in favour of its third reading
- The End of Life Choice Bill became the End of Life Choice Act 2019 on 16 November 2019.
- A binding referendum at the 2020 general election decided whether the End of Life Choice Act 2019 would come into force (start operating as law). The referendum passed 65% to 33% according to the provisional results released on 30 October 2020.
The Proposed Legislation
The Submissions Process
- Report from Parliament’s Justice Committee, including their recommended amendments to the End of Life Choice Bill
Parliamentary Debates on the End of Life Choice Bill