Euthanasia: Are we ready for legalised assisted dying in New Zealand?

Last year almost two-thirds of New Zealanders voted to legalise assisted dying. So come November 7, euthanasia will be legal. The Ministry of Health expects about 1100 people to request it in the first year and about a third to follow through.

But plenty of questions remain about whether the processes and infrastructure will be in place for it to happen.

Six months out, the ministry that is responsible for implementing the End of Life Choice Act and making any regulations is still in the process of appointing people to the three statutory positions to oversee the regime.

We lack clarity around how health practitioner training will roll out, who or how many will take part, how training will be funded, or what support will be available.People are already asking health practitioners and advocacy groups for guidance and advice, but nobody is any closer to being able to provide answers.

Despite the criticisms, Health Minister Andrew Little says the ministry has assured him everything will be ready and he’s holding them to that.

“They’re giving me regular updates … I’m very confident things will be in place,” he told the Weekend Herald.

So what needs to happen to reassure patients, medical practitioners and safety watchdogs that euthanasia will be fair and safe? Here are some of the main concerns and the state of play so far.

PATIENTS

The process around assisted dying is complex, and potential patients will need to be very direct with the way they request it. Public information on the process won’t be available until a month before the act comes in.

People are already approaching advocacy groups asking how they can apply. Dr Mary Panko, president of the End of Life Choice Society, says they’re having to explain that people can’t apply until the act becomes law, but is adamant there needs to be clear guidance for patients and their families. She wants people to know what to say, as doctors will not offer choice. By nature, people tend to talk around it, but phrases like “I can’t bear this, I’ve had enough” won’t be clear enough for a doctor to proceed. She says, “The doctor will just sit there nodding and wondering what’s going to happen next and the patient will feel like they’re being turned down.”

In Victoria, where assisted dying became legal two years ago, there are care navigators who liaise between the community and health practitioners. Panko is keen to see navigators introduced here saying they benefit the people who are initially wondering if they would be eligible as well as providing support for doctors.

While patients and their families are the first ones thought of when it comes to support, service providers will need support as well. Even for those who want to be involved, it’s not going to be easy. Royal New Zealand College of General Practitioners president Dr Samantha Murton says the emotional component is significant and it was found in Victoria that support is a critical requirement that needs to be “stood up” early, “so any emotional burden can be dealt with”.

In a statement provided to the Weekend Herald, the Ministry of Health acknowledges each patient’s situation will be different, and it will be important for the overall process to be responsive to that. It’s currently looking at locations where assisted dying can take place, including people’s homes.

LEGAL OBLIGATIONS

Otago academic Dr Jeanne Snelling lectures in medical law and believes the biggest issue with implementation “is preparing rigorous guidelines so healthcare providers… are clear what it requires of them”.

That’s because, under the act, medical practitioners have several checks in place to ensure people make an informed choice. They can’t discuss assisted dying unless a patient raises it with them. They must be sure a person is competent to make an informed decision (including being able to understand, retain, weigh up information and communicate about it) and do their best to ensure that decision is free from external pressure. Both the practitioner treating the person and a second, independent medical practitioner must agree that a person is eligible. If either is unsure, a psychiatrist must also assess the person.

Murton says they want to know that any practitioner involved is both protected and competent. She says practitioners “need good clear guidance about what’s coercion and what’s not… We would like it to be extraordinarily clear for patients and families as well.”

Nurses won’t be responsible for making decisions about a person’s eligibility, but they will be the face of many initial conversations, with patients already asking questions about their options. Chairwoman of Palliative Care Nurses New Zealand, Louisa Ingham, wants information sooner rather than later because right now they have to tell people they don’t know. She worries we aren’t thinking about nurse education and support: “Nurses need some advice too; how do they deal with these conversations… what are they meant to say, what are their legal responsibilities?” New Zealand Nurses Organisation kaiwhakahaere, Kerri Nuku believes nurses will be cautious at least to begin with. Her members want boundaries clarified so they don’t find themselves facing disciplinary action because they’ve overstepped an invisible line. She says a recent workforce survey omitted nurses’ voices, “which was quite significant, as while registered nurses don’t have a specific role under the act, patients always speak to them about choices and end of life…” She doesn’t want this to be trial by error, or there will be hesitancy from nurses to even take that first step.

Questions are also being raised about how a doctor can detect coercion. President of the Australian and New Zealand Society of Palliative Medicine Leeroy William says, “To understand if someone is depressed, do they have the decision-making processes to make this decision now, is there any element of coercion? These are not things that people are trained to do regularly in healthcare.”

Lawyers for Vulnerable New Zealanders spokesman Richard McLeod queries how you train a doctor to detect whether a person is truly exercising voluntary choice “not … acting under some …form of coercion or pressure, such as the coercive force of not wanting to be a burden”.

However, Snelling says that while those worries are valid, none of us makes decisions that are completely free of the influence of other factors in our lives. She argues, “We can’t do the impossible, as in removing every kind of pressure on a person… they still have a right to make a decision in the context that they’re in and we do that all the time, but I think what the act is concerned about is when a person is being pressured to make a decision that they wouldn’t ordinarily, voluntarily choose to make without that pressure by a third party.”

TRAINING

The ministry is planning workforce training and guidance, but it won’t begin to be rolled out until July. The final training won’t be delivered until October/November, the month the act comes into force.

Just trying to get time off work for training in that brief window is a concern for healthcare practitioners. Nuku says “it should have been last July to get time off to train and …have time to consider their thoughts. This is a really emotional, sensitive topic for people.” She thinks with the training window as brief as it is, it’s going to be difficult for nurses to feel comfortable they’ve understood and can practise with confidence come November.

She stresses the importance of cultural competency, because “we know it’s absolutely imperative for every health professional when you’re having a conversation with Māori, or people of other ethnicities, to ensure the language is clearly understood and actions don’t become persuasive or influence a decision”.

Concerns have been raised about whether New Zealand will follow in Victoria, Australia’s footsteps (where assisted dying became legal in 2019) and limit training to a six-hour online tutorial. Little states there will be several ways training will be delivered, including online “tests and interactive options, so webinars and the like, and …other face-to-face tutelage as well”. He believes the ministry’s planning to have a conference to develop processes and protocols and have some face-to-face discussion before the commencement date.

Medical Council chairman Dr Curtis Walker has full confidence the right training will be in place “because it needs to be”. The council sets standards for doctors around professionalism, competence and behaviour and he says, “doctors need to be competent in undertaking all procedures …this is no different”.

However, Hospice New Zealand clinical advisor and palliative care specialist Dr Rod MacLeod doesn’t believe the training will be adequate: “You can learn about the drugs and how to deliver them, but that’s just a very small part of it. How do you learn about the complex conversations that will take place and the complex family dynamics?”

WORKFORCE

In February, the ministry surveyed health practitioners about the act’s implementation. Only 10 per cent of the almost 2000 who responded indicated definite willingness to be involved. Another 20 per cent indicated it was a possibility. Despite some public alarm over the figure, Little is confident the workforce to deliver euthanasia will be available.

Official expressions of interest from health practitioners won’t open until July at the earliest, but the minister is confident most of the country will be covered for the service. He says discussions continue with individual practitioners because “if a DHB isn’t confident that there are practitioners either on its staff or in its area who can offer services then they’re not in a position to sign up to anything, so we would more likely do it practice by practice”.

However, the fact it’s new legislation could prove a barrier to doctors signing on – at least initially. Snelling says, “A lot … will sit back to … see what happens and won’t want to be in the vanguard.”

Psychiatrists will assess the competency of a person to make an informed choice at a doctor’s request. A statement provided by the Royal Australian and New Zealand College of Psychiatrists acknowledges there will be workforce issues that need to be resolved as the psychiatry workforce is quite small, concentrated in the main centres, and is already under-resourced to deal with existing mental health issues.

ACCESS

Equitable distribution across the country is something of a concern. People will expect to have choice wherever they live, but with staffing issues, that might not be possible.The ministry says access and equity of service, regardless of location, are key considerations.

However, Nuku says there are also the underlying issues of poverty, housing and inconsistency, either of disease or resources. She says that may determine whether someone has choice removed. “If you can’t afford to have two doctors, one being a specialist, that may actually preclude you from accessing the choice within the bill. Will it be supported if someone doesn’t have the financial support to offer the second opinion, or if they live rurally or remotely?”

McLeod believes New Zealand is an uneven playing field and for some people, this law is going to be the only choice. “They can’t access proper palliative care because of where they live in the country, or Pharmac doesn’t fund their medication, or they’re victims of failures in the healthcare system. What other choice are they going to have?”

PALLIATIVE CARE

Palliative care is what patients receive to make the rest of their lives more comfortable when they have a life-limiting illness. Healthcare experts on both sides of the euthanasia debate agree on one thing – it needs more resourcing. Murton believes there needs to be equal support and input into palliative care, so people have options. She says then “every GP in the country could provide the best palliative care so that those who do meet the criteria for euthanasia can access that but if they don’t choose that they also have access to really good palliative care.” The ministry says assisted dying isn’t a replacement for appropriate palliative care services and is working with the Government to improve quality and equity of palliative care services separately from the act.

Those with extensive palliative care experience note that it makes up only about one week of teaching in a five-to-six-year curriculum. William says there’s a huge gap in education compared to other speciality areas like cardiology. He says this means doctors aren’t as equipped as they need to be – even just talking about death is still a taboo subject for many.

MacLeod agrees. He sees it as a professional failing that he hasn’t been able to convince New Zealand universities to increase palliative care education for medical students. He wants palliative care to have at least as high a priority as the End of Life Choice Act in the ministry’s publicity.

Most New Zealand hospices won’t be providing assisted dying services, and that’s raised concerns for Panko, who queries what it will mean for patients who are already in hospice and want to opt for euthanasia.However, MacLeod says while they might not be involved or have it on their premises, they will steer a course making sure families aren’t disadvantaged in any way because they choose assisted dying. He says “hospice is not going to abandon any family who opts for assisted dying. We aren’t necessarily going to be doing the deed ourselves, but we will still be there to support the family and the patient if we can.”

One man's story

Stuart Armstrong hadn’t given much thought to assisted dying until he was diagnosed with terminal cancer. “The bell’s ringing for you, pal, what do you think?” He says it’s a confronting issue when it’s suddenly about your own situation – not so much when it isn’t.

This month marks seven years post-chemo and surgery for a terminal prognosis of prostate cancer. He says 10 years is the longest survival for guys like him and wants control over his own healthcare and decisions about when he dies.

Armstrong lives in Lincoln, on the outskirts of Christchurch, and has become well known in recent years as an advocate for the End of Life Choice Act. He spent several hundred hours and a couple of years campaigning fervently.

When the bill passed, he says a huge wave of relief swept over his body and mind. “I’ve just never felt such a feeling in my life. Knowing I don’t have to worry about involving somebody else in my death. I don’t have to worry about driving off a cliff or putting a gun under my chin, or anything drastic and horrible that has been the case until now if you’ve wanted to control it yourself.

He says he considered taking an overdose. “I stockpiled codeine, for God’s sake, on the off chance this didn’t go through.

“All these horrible things that you think about at 3am when you’re not sleeping and you’d like to. These things are suddenly gone and instead, you can imagine a comfortable, peaceful, calm death, for your family, as much as yourself.”

He has his own idea of how he wants to die and wants it on his own terms.

“I’d like to be on horseback with my wife and some close family and friends around me. I’d like to take the drugs and after having a huge bonfire on the beach the night before, say goodbye to the people I love, and go quietly on horseback, looking out at sea.

“As sad as that prospect is,” he says, “it’s a hell of a lot less sad than being compelled to be connected to some pain-relief machine.”

Armstrong likes the idea of Victoria’s care navigators, in Australia, who provide guidance and support for patients and their families working through the various processes. But mostly, he wants dying to be as simple as possible for patients “so people of various degrees of acceptance and understanding of this realise what they’re able to do for themselves”.

He says he doesn’t want this to be enshrined or clouded in some mystical med speak “where people are put off by something the doctor says. I just want it to be supported and made simple so that everyone is aware this is available to them.”

Euthanasia in NZ: The rules

To be eligible for assisted dying, a person must meet ALL of the following criteria:

• be aged 18 years or over

• be a citizen or permanent resident of New Zealand

• suffer from a terminal illness that is likely to end their life within six months

• be in an advanced state of irreversible decline in physical capability

• experience unbearable suffering that cannot be relieved in a manner that the person considers tolerable

• be competent to make an informed decision about assisted dying

A person cannot receive assisted dying solely because they are suffering from a mental disorder or mental illness, have a disability, or are of advanced age

A person cannot use an “advance directive” to request assisted dying. An advance directive is a statement setting out ahead of time what treatment they want, or do not want, to receive in the future. A person requesting assisted dying must be able to make that decision at the time the request is made.

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