The End of the Road for the Assisted Dying Campaign?

This article was published in Open Society in October 2020 | On October 17 2020 New Zealanders vote to decide whether the End of Life Choice Act 2019 should come into force. If more than 50% vote yes, this Act, which has already made its way through the parliamentary process and received Royal Assent, will come into force in 12 months.

The End of Life Choice Act 2019 allows people to access a physician assisted death under certain circumstances. It outlines safeguards aimed at protecting vulnerable people, and protections for medical staff who have a conscientious objection to voluntary euthanasia.

The question for us as humanists and rationalists in New Zealand is, when it comes to voting on this referendum, how do we balance personal autonomy, human rights, and the collective good?

Grant Robertson, Minister of Finance, in the third reading of the End of Life Choices Bill stated that :“Death is not just a physical event; it is also a social event.”

If we take the utilitarian principle that the most ethical choice is one that produced the greatest good for the greatest number, is passing the End of Life Choice Act 2019 the most ethical choice we can make?

What New Zealanders think about assisted dying?

Repeated polls in New Zealand show that as a country we support assisted dying. A Newshub-Reid Research Poll in February this year showed 62% in support and 24% opposed the Act, and more recently a Colmar Brunton Poll in July showed 75% support and 20% opposition.

Throughout the Bill’s parliamentary process a number of special interest groups spoke for and against the law change. This led to the adoption of a number of changes in the Act before it was passed by Parliament last year.

These include limiting the eligibility criteria to only people suffering “from a terminal illness that is likely to end the person’s life within six months”, so people who are incurably, but not fatally, suffering would not be eligible. It also includes exclusions. For example, advanced age, and people with disabilities, and mental health issues would not be eligible for these reasons alone.

However, while many of the disability and mental health groups who oppose the Act raised coercion as a concern, and the Act has remedied this through sections including that medical practitioners not being able to initiate conversations about assisted dying, many of the groups still oppose the Act. Often they cite the current treatment many people with disabilities and mental health issues receive from existing health services, and the lack of funding for services that would improve quality of life and access to health care.

However, in spite of the concerns and practicalities of enacting a law that allows for people to request an assisted death under certain circumstances, there is good reason for supporting the Act.

Lecretia Seales, a New Zealand lawyer and euthanasia campaigner who died of a brain tumour in 2015 stated that:

“I want to be able to die with a sense of who I am and with a dignity and independence that represents the way I have always lived my life”.
Lecretia Seales, a New Zealand lawyer and euthanasia campaigner

Currently, people living with progressive illnesses have to make the painful choice to either end their own life alone, and earlier than they’d want, before the illness makes it impossible to take action without assistance, or accept what could be a long, painful death.

Is it against the Māori world view?

Atuakore, the Māori Atheists and Freethinkers group, states that in pre-colonial Māori society there was a form of euthanasia, where death was sped up for people who were incurably suffering.

This was echoed by Hon Peeni Henare in the House of Representatives debates: “The question I ask to those who say “This is not a Māori custom” is this: are you talking about a custom that has existed since the arrival of non-Māori, or is it a true Māori custom? If these people read up on the histories that have been recorded by our ancestors, they will see that Māori were able to hasten the death of another if that person was terminal, if that person was afflicted with a disease that ensured that they are not long for this world. Therefore, my ancestors have said to me, “There is no issue with easing a person’s departure, or a person’s passing into the long night.”

Furthermore, co-founder of Atuakore, Henare Parata, said that there is no one overriding tikanga that is permanently unchanging and should be rigidly adhered to, stating that, “And even if there was a tikanga – why couldn’t it change? All tikanga can (and have) change! The overriding principle on this issue is manaakitanga: providing the utmost care and comfort to others.”

However, Hon Peeni Henare pointed out that the House of Representatives is not the stage for a debate on custom-based issues. Stating, ”I would say: this is not the house for that type of debate. I say that laws are different to the customs and traditions of our ancestors.”

MP Willie Jackson told Parliament that three high-profile Māori leaders he had spoken with said “they were tired of hearing this was a violation of our culture. “All were unanimous that in their view tikanga evolves, tikanga changes and there is no one tikanga,” he said.

As a humanist

While death is something universal, the meaning of death is not.

Humanists are non-religious people who live by moral principles based on reason and respect for others. We believe that this present and physical world is the only life we experience and use reason to guide our decision making.

Our concern for quality of life and respect for personal autonomy led to the view that in many circumstances assisted dying, or voluntary euthanasia, is the morally right course.

Humanist organisations in New Zealand have long supported reforming the law to enable mentally competent adults who are either terminally ill or those who are incurably suffering, permanently incapacitated and who find their lives intolerable, to have the choice of an assisted death.

The case for equality

Being able to die, with dignity, in a manner of our choosing must be understood to be a fundamental human right.

The question “do we have a right to die” may seem strange to ask when it is a natural process that is inevitable for all of us. But as suicide is not illegal, and people are legally entitled to refuse life-saving or life-prolonging treatments, the question of whether we have a right to die is a pertinent one. Many of the strongest campaigners for voluntary euthanasia and assisted dying have been people seeking this right.

Nick Chisholm, a New Zealander who has lived with locked-in syndrome since 2000, recognised that the option to end his own life was unavailable to him unless he was willing to starve himself. In an article in the British Medical Journal he said: “I thought of suicide often (mainly when alone in bed at night). I never had enough courage then to go through with it. Even if I wanted to do it now I couldn’t, it’s physically impossible.”

In the UK late last year, Paul Lamb, who is paralysed from the neck down and living in constant pain, failed in his legal fight for the right to die. He argued that the current UK law, which prohibits any assistance in ending another person’s life, with the threat of a sentence of up to fourteen years’ imprisonment, breaches his human rights against discrimination (Article 14) and respect for private life (Article 8).

While some disability groups have urged New Zealanders to reject this law change, the issues they often raise are fear of coercion and slippery slope arguments. The reality is that a majority of people campaigning for assisted death are using disability anti-discrimination laws as the cornerstone of their campaigns.

It should be noted that, even in the event that New Zealand’s assisted dying law passes, people with incurable conditions regardless of the level of suffering, would not be eligible for an assisted death.

As an individual

Many humanists believe that individuals should be allowed to decide on personal matters for themselves, so long as that decision doesn’t harm others; and that if someone in possession of full information and sound judgement decides that their continued life has no value, their wishes should be respected.

Philosopher AC Grayling noted that “Dying is an act of living; it is indeed one of the most important events in life, and because it can be pleasant or painful, timely or untimely, tragic or desired, it is central to the character and quality of a person’s life as he himself experiences it. We do not experience death, which is not an activity but a state – a state of non-existence indistinguishable from being unborn. But we very much experience dying, and just as we hope that most of our acts of living will be pleasant, we likewise desire that the act of dying should be so too – or if not pleasant then at very least not frightening, painful or undignified.”

As Lecretia Seales states, “I am the one who has been inflicted with this disease, no-one else. It is my life that has been cut short. So who else but me should have the authority to decide if and when the disease and its effects are so intolerable that I would prefer to die? I want to be able to die with a sense of who I am and with a dignity and independence that represents the way I have always lived my life”

Currently, the needs and autonomy of patients are often disregarded. Anecdotally, we know that some people are in fact helped to die by doctors or nurses but without the safeguards that legislation would bring. Compassionate doctors, who follow the wishes of their terminally ill or incurably suffering patients by assisting them to die, risk being charged with assisting suicide or murder. The current system also results in close relatives being faced with the immensely difficult choices of whether, knowing that it is unlawful, to assist a loved one who is begging for help to put an end to their suffering or not to act and hence prolong their suffering.

As a member of our society

If a good death is one surrounded by friends and family does this Act allow us to have more ‘good deaths’?

In New Zealand our understanding of the importance of wider family, whānau and hapū is part of our identity. While as humanists we may focus on the reduction of suffering for the individual, we need to recognise the impact this legislation change may have of the well-being of the wider group.

Assisted dying is not a replacement for palliative care. People who support assisted dying also support quality palliative care. The aim is to reduce an individual’s suffering, and respecting a person’s right to be treated as an autonomous human being. Some studies have found that the opportunity to discuss death freely and extensively in an open atmosphere with a loved one, and being able to share in a ‘good death’, may make it easier to come to terms with an impending death and reduce the trauma.

Palliative care will not always be an adequate solution for all people. For example, some people may not want to go into a hospital, others would prefer to die while they are fully alert and able to say goodbye to their family. The End of Life Choices Act allows for more choices for individuals, but doesn’t remove the need for well-funded and accessible palliative care.

Grant Robertson, in the House of Representatives, in support of the Act, stated: “It is not easy to do difficult things, but unless we do difficult things, we will never do important things.”

References

House of Representatives. End of Life Choices Third Reading. (2019). November 13, 2019. (Volume 742; Page 15048). Retrieved from https://www.parliament.nz/en/pb/hansard-debates/rhr/combined/HansDeb_20191113_20191113_16

Newshub. (18 February 2020). New poll shows support for both recreational cannabis and euthanasia dropping. Retrieved from: https://www.newshub.co.nz/home/politics/2020/02/new-poll-shows-support-for-both-recreational-cannabis-and-euthanasia-dropping.html

Graham, R. (27 July 2020). Lecretia Seales’ widower praises Kiwis for poll showing support for doctor assisted euthanasia. One News. Retrived from https://www.tvnz.co.nz/one-news/new-zealand/lecretia-seales-widower-praises-kiwis-for-poll-showing-support-doctor-assisted-euthanasia-q03174.html

Chisholm, Nick & Gillett, Grant. (2005). The patient’s journey: Living with locked-in syndrome. BMJ (Clinical research ed.). 331. 94-7. 10.1136/bmj.331.7508.94.

Politics.co.uk. (5 July, 2019). Paralysed man Paul Lamb applies to High Court to change assisted dying law. Retrieved from https://www.politics.co.uk/opinion-formers/humanists-uk/article/paralysed-man-paul-lamb-applies-to-high-court-to-change-assi

Dignity in Dying. Tony Nicklinson. Retrieved from: https://www.dignityindying.org.uk/assisted-dying/the-law/tony-nicklinson/

Singer P. Ms B and Diane Pretty: a commentary. Journal of Medical Ethics 2002;28:234-235. Retrieved from: https://jme.bmj.com/content/28/4/234

Grayling, A.C. (2001). Diane Pretty – the case for her right to choose. Retrieved from http://www.acgrayling.com/dianne-pretty-the-case-for-her-right-to-choose

The Ontario HIV Treatment Network. (June 2017), Impact of medical assistance in dying on family and friends. http://www.ohtn.on.ca/wp-content/uploads/2017/06/RR118_MAiD-1.pdf