The Health Select Committee’s inquiry into medically assisted dying has brought to the fore New Zealand’s deeply polarising debate on voluntary euthanasia. JUDE BARBACK takes stock of the arguments for and against, including the NZACA’s strong stance.
“Whilst numerous medical interventions have lengthened my life, they have now been exhausted, and I endure a life with very little quality, a kind of half-life. I exist.”
These are the words of Faye Clarke, who was diagnosed seven years ago with myeloma, an incurable form of bone marrow cancer. In her submission to the Health Select Committee’s inquiry into attitudes towards physician-assisted dying, she outlined the pain she continues to endure and her wish to be given medical assistance to die.
Clarke is one of many who supported the petition of former Labour MP Maryan Street and 8,974 others requesting a Health Select Committee inquiry into “public attitudes towards the introduction of legislation which would permit medically assisted dying in the event of a terminal illness or an irreversible condition which makes life unbearable”.
New Zealand’s preoccupation with euthanasia
New Zealand has toyed with the idea of medically assisted dying for some time now. Over the years, various efforts to change the law have been made through the introduction of various members’ bills. Yet to date, none have proceeded very far.
Iain Lees-Galloway’s End of Life Choice Bill (originally introduced by Maryan Street) failed to be selected for 18 months before being withdrawn late in 2013. Former NZ First MP Peter Brown’s Death with Dignity Bill in 2003 failed in a conscience vote at the first reading stage, meaning the issue did not go before a select committee. A previous bill championed by Michael Laws in 1995 also failed in a conscience vote. An End of Life Options Bill was also published in 2015, but was not submitted to the ballot.
Most recently, ACT MP David Seymour submitted the End of Life Choice Bill to the members’ ballot in October last year and is now waiting for it to be randomly drawn from the ballot so Parliament can vote on it.
But it was Street’s petition, launched with the Voluntary Euthanasia Society in the wake of the emotive and high-profile Lecretia Seales case last year, that helped the issue gain some traction. Seales, a 42-year-old lawyer and cancer sufferer, fought hard for the right to legally end her life with medical assistance before passing away naturally in June last year. The petition led to the current Health Select Committee inquiry, for which submissions closed on 1 February this year.
Technically, the inquiry is not about any specific legislation. Instead, the committee will examine the issues surrounding medically assisted dying. It will investigate the factors that contribute to the desire to end one’s life, the effectiveness of the services and support available to those who desire to end their own lives, the attitudes of New Zealanders towards the ending of one’s life, and the current legal situation and international experiences.
It is the first time these issues have been scrutinised at this level and the closest
New Zealand has ever been to considering a change in legislation in this area.
Opening the doors to elder abuse?
Euthanasia has always been a topic that will divide opinion and, unsurprisingly, the inquiry into medically assisted dying has attracted many submissions in favour and many against.
The New Zealand Aged Care Association (NZACA) was among those to oppose the introduction of medically assisted dying in the event of a terminal illness or irreversible condition. After canvassing its members, the NZACA concluded that the more proper position for older citizens in care was to receive additional support in the provision of care as they progressed through the natural ageing process, rather than the hastening of their deaths.
In its submission the NZACA touched on the practicalities of introducing medically assisted dying, including the impact on staff and staffing. It also raised the fact that as not all facilities would agree to it, residents may be placed in facilities where it was practised, rather than in the facility most suited to them and their circumstances.
However, the cornerstone of the NZACA’s argument against medically assisted dying was the vulnerability of older New Zealanders. The association believes it may open doors to coercion and elder abuse.
“They may inwardly feel pressured by their desire, or their families’ encouragement, to make a decision to die. This may be motivated, personally or externally, [by the desire] to leave some inheritance intact. Around 50 per cent of abuse cases handled by Age Concern New Zealand are financially driven.”
However, Dr Jack Havill of the Voluntary Euthanasia Society states there is no evidence for elder abuse associated with physician-assisted dying. He even goes as far as describing such abuse as “virtually impossible”, due to the safeguards that would be in place under potential legislation. Certain criteria would have to be met. For example, in addition to the older person being mentally competent and having a terminal disease or irreversible, unbearable condition, two doctors would be involved in looking at the criteria and for signs of coercion and each decision would be reviewed by an expert committee.
Havill points out that the Supreme Court of Canada in February last year agreed that medical practitioners are capable of discerning abuse and coercion.
“The experience in legalised jurisdictions has not shown any elder abuse associated with it [physician assisted dying] – in fact, the only study done on various vulnerable groups has confirmed lack of abuse.”
However, Euthanasia Free New Zealand believes that coercion and abuse in this manner is conducted subtly and over a long period of time. The advocacy group supports the NZACA’s stance, stating that “no safeguards can protect elderly, disabled and mentally ill people from subtle, or not so subtle, pressure to request death”.
They state that medically assisted dying would put pressure on people who choose to stay alive, implying that they are a burden on society.
“It would make caring for disabled, mentally ill and elderly people optional, instead of the default.”
Is there a place for advanced directives?
While the Health Select Committee’s investigation isn’t about any specific legislation, including the End of Life Choice Bill, there is no denying the inquiry could potentially lead to a law change.
As such, in its submission to the committee, the Voluntary Euthanasia Society outlined specific clauses it believes need to be included in any legislation on medically assisted dying, such as making it available to individuals with “grievous unbearable irreversible suffering” as well as those with terminal illnesses.
“To simply have a law allowing [physician assisted dying] only in imminent terminal conditions, as has been suggested by some, would be inadequate. Some conditions such as in motor neurone disease are intolerable to the patient.”
It also stated a need for the provision of end-of-life directives. To remove this provision would “remove the autonomy of many patients realising their worst fears after they have become incompetent”.
By contrast, David Seymour’s End of Life Bill doesn’t allow for people to sign advance directives; it is only for people who are mentally sound at the time a decision is made to end their lives. Seymour says the difference between his bill and previous ones is that the decision around assisted dying is based on personal choice.
“Assisted dying isn’t something that can be done to you, it’s something that you choose and are capable of choosing at the time you choose for it to happen,” he told Stuff.
He’s aware that his Bill’s focus may disappoint those who would like to see an advance directive in it.
End of Life Choice Bill
David Seymour says the motivation for his End of Life Choice Bill is compassion.
“It allows those eligible to choose the manner and timing of their final days, allowing them to end their life in peace and dignity, surrounded by loved ones,” he says.
The Bill proposes that any New Zealander 18 years or older will be eligible for “assisted dying” if he or she suffers from either a terminal illness likely to end his or her life within six months or an irremediable medical condition causing them unbearable suffering. They must also understand the nature and consequences of assisted dying.
Euthanasia Free New Zealand believes the Bill is too open to interpretation. It believes much of the language is subjective. The phrase “irremediable medical condition”, for example, is vague enough to cause almost anyone to be eligible. Similarly, there is a lack of definition around “terminal illness”. Arguably its biggest concern is that the Bill doesn’t factor in the effects depression can have on such decisions.
The overseas stance
It is not a debate unique to New Zealand. The biennial World Conference on end-of-life issues is held in the Netherlands this month, providing a forum for dying-with-dignity societies from all over the world to exchange lessons learned in the process of legalising end-of-life choices.
The Netherlands is an appropriate venue – the country was one of the forerunners in legalising assisted dying. In 1973 a Dutch physician facilitated the death of her mother following repeated requests for euthanasia. She was convicted, but the court’s judgment set out criteria when a doctor would not be required to keep a patient alive against their will. This criteria was gradually formalised and enshrined in legislation by 2002.
Assisted dying is also legal now in Belgium, Luxemburg, Switzerland, Colombia and several US states. Most of these countries extend medically assisted dying protocols to those with unbearable irremediable illnesses – as well as those with terminal illnesses – and allow provision for advanced directives. The US states have provision only for terminal illness.
The Supreme Court of Canada overturned a ban on physician-assisted suicide last year and new draft legislation was unveiled in Canada last month on doctor-assisted suicide for adults suffering incurable illnesses or disabilities.
Other countries have taken more cautious approaches. France has recently approved a Bill that will let doctors keep terminally ill patients sedated until death – but has stopped short of legalising euthanasia or assisted suicide. In Germany, doctors are able to provide patients with the necessary drugs for a medicinal suicide, but are not permitted to take any action in the actual suicide.
In Australia, former prime minister Bob Hawke revealed his support behind a push to legalise euthanasia. However, Federal Health Minister Sussan Ley has openly opposed euthanasia, instead acknowledging the need to improve end of life care.
Ley’s stance is a leaf out of the NZACA’s book. In its submission to the inquiry, the NZACA outlined how the more that members were involved in end of life care the more opposed they were to medically assisted dying. Studies in the UK and Washington State revealed similar trends.
The NZACA emphasised that its members are wholly committed to the contentment and welfare of their residents, who need and deserve quality care at the end of their lives.
“Our job is to make these people as comfortable and pain-free as possible. At the same time, we also support the emotional and physical needs of the families and whānau of these residents.”
Euthanasia Free New Zealand echoes this stance.
“We believe true ‘aid in dying’ and compassionate care mean walking alongside a suffering person and their loved ones. We advocate that medical professionals do everything possible to relieve their patients’ physical and psychological pain, and enable them to be dying with dignity, but without crossing the line of intentionally ending a person’s life.
“To do so would be ethically different from other end of life practices, such as switching off life support, do-not-resuscitate orders, or withdrawing futile medical treatment.”
The UK’s GW4 Dying Well Network was formed in response to policy failure to “enable good deaths at the end of long lives”. The network talks about the need for“radically new thinking to drive innovative research that can inform philosophy, policy and practice, not only for the frail elderly but for any with high dependency and mental incapacity who cannot die as free and active agents”.
The GW4 network has initiated a programme of linked research projects with the potential to challenge and inform future end of life policy.
Here in New Zealand there has been a push for end of life care services to be improved. The NZACA has called for the Government to pay rest homes a distinct palliative care supplement, but Clinical Director of Canterbury Integrated Palliative Care Services Dr Kate Grundy says any improvement to funding needs to go hand in hand with an overhaul of how facilities are supported, both by the DHBs and by specialist palliative care services, including hospices.
Improving end of life care is on the Ministry of Health’s agenda. Late last year the Ministry published Te Ara Whakapiri: Principles and guidance for the last days of life and is leading a review of adult palliative care services.
Matt Vickers, widower of the late Lecretia Seales, welcomes these initiatives. However, he claims that neither addresess all end of life issues and that assisted dying legislation will complement palliative care, rather than compete with it.
“It’s those that palliative care can help the least that need assisted dying legislation the most.”
Dying with dignity can mean different things to different people. To some it is a nod towards medically assisted dying. To others it is providing people with the best end of life care possible.
Preserving the human life or honouring freedom of choice – it was never going to be a straightforward decision. Either way, it is time New Zealanders laid this issue out for full scrutiny and considered the multitude of different views. We are more than ready to have this debate.