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Dying with dignity: Why crucial questions remain over new euthanasia law

11 min read

After a long battle, euthanasia is now legal in New Zealand. However, overseas experience shows many doctors may initially be reluctant to get involved. By Sylvia Giles.

As someone trained to treat people with cancer, Dr Cameron McLaren is the first to admit his profession has a reputation for not knowing when to stop.

“That reputation is not inaccurate,” he says. “We certainly got it for a reason. And I think a lot of it comes from caring for your patient. You form pretty strong bonds over the weeks, months and years treating their disease, and sometimes you don’t want to let them go.”

However, the medical oncologist from Melbourne now finds himself in a new role that exists somewhat awkwardly “between life and death”, as he puts it, as a practitioner and advocate for assisted dying.

McLaren talks about assisted dying with the lexicon of a tech entrepreneur, combined with the patient-centred approach that is de rigueur these days in medical curricula.

“When the legislation went live, I had nothing to do with it, or advocating for it,” he recalls. “I did the training the night before because I presumed it was something we were going to offer patients. This was going to be a decision they had the right to make, and, to my mind, they had a right to be supported in it. Then I found that no one else had done the training.”

Initially, he was approached to assess patients who weren’t his own, in his capacity as an oncologist. The first lived 4km from his house and had spent four months trying to find a doctor to assess him. He had a brain tumour, with daily seizures, but his wife needed to keep working. She would put him in the car every day, and then on to a couch in the next room with a webcam trained on him, so she could tend to him when he seized.

“It was just a terrible situation,” says McLaren, “and he really hated what it was doing to her.”

McLaren soon realised the new law wasn’t going to be much use unless there were professionals capable of carrying it out. “I just told them I would be willing to see similar cases. Then it snowballed and there were more than I expected.”

So far, he has dealt with more than 160 applications from people wanting to die. Of these, he was present when 40 people took their own dose of fatal medication.He also helped provide intravenous medication to another 16 people.

And so, in addition to his day job, McLaren now finds himself doing a PhD on the effects of assisted dying on the grieving process of close contacts. He is also the clinical moderator of a group of Victorian doctors who work in the field. His advocacy has now brought him virtually to our shores, both in much of the Ministry of Health’s online training and through Voluntary Assisted Dying New Zealand – a groupestablished for professionals to share their experiences “so everyone doesn’t have to reinvent their own wheel”.

Tipping point

Voluntary assisted dying became legal inVictoria in June 2019, after a prolonged and divisive public debate. It was the first Australian state to make the change, although four more states have since passed similar legislation: Western Australia, Tasmania, South Australia and Queensland.

In Aotearoa, a referendum on the issue in 2020 gained 65 per cent support among voters. Indeed, University of Otago research has shown that, on average, 68.3 per cent of people in this country have been in favour of euthanasia for the past 20 years.

The issue has been powerfully argued by campaigners such as Matt Vickers and his wife, Lecretia Seales, who died of a brain tumour after fighting unsuccessfully in the High Court for her doctor to help her die without criminal prosecution.

The law, which began with a member’s bill by Act leader David Seymour, came into effect on November 7, allowing any New Zealander with an illness that is expected to limit their life to less than six months to raise the issue of medically assisted dying with any medical practitioner.

In the run-up to the referendum, there were claims from some medical quarters – such as the New Zealand Medical Association, which represents about a sixth of the approximately 18,200 practising doctors in this country – that doctors were less supportive than the general public of such a move.

The association vehemently opposes anything under the umbrella of medically assisted dying and sees it as a radical departure for medical professionals. “Allowing death to occur,” it wrote in its submission to the justice select committee in February 2018, “is fundamentally different from a deliberate act that has the primary intent of terminating life.”

But other physicians hold a different position, believing that this is something many doctors want to have available, but are reluctant to take part in. In every jurisdiction it has been introduced, says McLaren, early recruitment has been an issue. Although there are many reasons for this, including training, assessments and requirements, the perspective of doctors also plays a key role, he believes.

“Medicine is a pretty conservative profession, and most of what we do is pretty evidenced-based. The problem with adopting a service such as this is that there is very little evidence to substantiate our treatment, or our involvement. It’s much easier for moderate doctors to wait and see, and there are a lot who take that approach.”

In vast Western Australia, where assisted dying has been available for three months, there is a core of only eight to 10 physicians doing the work, with some clinicians travelling five hours to assess a patient.

Deeper insight

McLaren admits he has found his colleagues’ reticence enormously frustrating. “It had a really negative impact on me, psychologically. Two years into providing assisted dying, I said that I was closing my books for a month. It really became quite apparent that when death and suffering is a part of your daily life, it does affect you. We actually need to share that load and we need other doctors to take that on so it’s not just the brave few earlier adopters with their backs against the wall trying to see everybody.”

He insists, however, that despite the challenges, it’s incredibly fulfilling work. “My patients have taught me much about life; the priorities of those who are about to end their journey strip back to what is important quite succinctly.” He also believes it has made him a better oncologist, as he has gained a much deeper insight into his patients’ personal lives.

The reality, he says, is that voluntary assisted dying is about control. “The vast majority of patients, when you ask them why, will tick the box to say ‘autonomy’. They also want to make sure they don’t have to be fearful – it palliates their sense of fear. To know that if their worst fears are about to come true, there is another option.”

Less than a handful of his voluntary assisted dying patients have cited uncontrolled symptoms as their main reason for seeking his help.”It’s usually in combination with autonomy and being less able to engage in activities that are enjoyable. Through their months or years of oncology treatment, or respiratory appointments, they are now able to take control back one last time, and it gives them a sense of ownership in their own destiny, which they haven’t had in a long time.”

Leap into the unknown

One of the provisions of the NZlaw is that doctors who help with assisted dying are not legally allowed to identify themselves in public. But one local doctor spoken to by the Listener says it was McLaren’s plea, at least in part, that moved her to sign up for the Ministry of Health’s training. She recognises the same inertia among her colleagues that McLaren describes. “I think it comes back to Western medicine being based on paternalism, and this is moving even further away from paternalism. It completely freaks doctors out because it’s not the basis of how they learn.

“I thought, personally, it is something that I would want, and something my family have talked about as something they would want, and I’ve had family members die saying they wish it was available. So I was totally of the belief that it should be available.”

As is the case overseas, it is forecast that GPs will make up the vast majority of the workforce who help with assisted dying. She believes some patients will be shocked and hurt to learn that their own GP will be unwilling to help, especially if the doctor doesn’t particularly object to the idea of assisted dying. And she is expecting to feel isolated at first, in part because the change will be so new. “We don’t know how it’s going to play out, and there will be factors that will be different from any other country. You are taking a giant leap into the unknown. Some of that is exciting, because that’s the person that I am; I quite like novel and interesting things. But, to a lot of clinicians, it’s not. They’re very A-type and terrified of doing the wrong thing.”

She already had one likely patient booked in to see her on November 7.

Another organisation not in favour of the law change is Hospice New Zealand. It did not respond to Listener requests for comment, but has said in a statement it “does not support a change in the law to legalise euthanasia or assisted suicide in any form”.

The local doctor the Listener spoke to believes the issue should be left to individual choice. She says she knows of two colleagues who would both be willing to help with assisted dying, but have been told by the hospice they work for that the only way that could happen was if they left the organisation.

As someone who has provided palliative care, she also disagrees with the hospice organisation’s belief that everyone can have a good death. “I absolutely refute that. The two patients of mine that have had the worst deaths have been people I have visited in the hospice.” The issue is not one of skill, she believes. “There are just people who sometimes have a terrible death.”

Palliative care

Palliative care itself was a radical departure from the medical status quo in its day. Its history is intertwined with Christianity, and although it was born out of the hospice movement, it has gone down its own path. It wasn’t recognised by the World Health Organisation as a speciality in its own right until 1990, but probably came of age in 2010 when a study in the New England Journal of Medicine showed median survival was longer among lung cancer patients receiving early palliative care.

According to a 2020 report on medically assisted dying in Canada, just under half of all deaths happened in people’s homes or private residences, followed by 28 per cent in hospitals and 17 per cent in palliative care facilities. Of all of these cases, 83 per cent of patients also received palliative care input; of those who didn’t, 89 per cent said it was available to them if they wanted it.

Internationally, a 2019 meta study looked at how palliative care and assisted dying have grown to coexist in countries where the latter is legal. It showed a huge amount of variation from country to country.It remains to be seen what relationship will develop here, but anyone thinking they might attend a hospice and engage with assisted dying services may well find they are incompatible.

Many clinicians are supportive of palliative care, regularly practise its principles and would like to see it better funded. However, all the palliative care consultants approached by the Listener either declined or did not respond to requests for interviews.
There is a fear that assisted dying could lead to palliative care receiving less funding.

However, this does not appear to happen in jurisdictions where assisted dying is legal.
Another quirk of the system in New Zealand is that once you mention assisted dying to your GP, visits for that purpose become free of charge from that point on. Medical practitioners will be paid a $1087.20 fee by the Government for performing the procedure.

Do no harm?

Often evoked by opponents of the law is the medical dictum Primum non nocere, or “first, do no harm” (often misattributed to the Hippocratic oath, which is no longer required of doctors). McLaren argues that good training on how to respond to a request for assisted dying is as important to those who won’t be providing the services as it is to those who will.

“There is actually a chance to do harm to the patient in how you respond to that question. It’s a terribly vulnerable position for a patient to be in, to bring that up with a doctor,” he says. “We’ve heard stories of [doctors] being like, ‘Oh, no, sorry, we don’t kill our patients,’ and that really imposes a judgment when they’re really asking for help.”

It’s also illegal, as the act requires clinicians not to inhibit a person’s access to lawful medical treatment, and to ensure continuity of care is maintained for a person requesting assisted dying.

But ultimately, says McLaren, it shouldn’t matter what doctors think. It’s what the patients think that matters. “It’s not up to us to judge people. People need to get off their high horses and realise where we fit in the grand scheme of things, and that medicine is only one part of life. And it’s our job to fit in with patients, not the other way around.”

Who is eligible?

To be eligible for medically assisted dying, you 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 your 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 you consider tolerable.
• Be competent to make an informed decision.

You cannot receive assisted dying solely because you are suffering from a mental disorder or mental illness, have a disability or are of advanced age.

Citizens and permanent residents who are overseas can return to New Zealand to access the service.

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

You can either ask your own health practitioner, or ask Support and Consultation for End of Life in New Zealand (Scenz) for the contact details of another medical practitioner. Contact details for Scenz will be available on the Ministry of Health website from November 7.

Both the medical practitioner treating you and a second, independent medical practitioner must agree you are eligible. If either medical practitioner is unsure of your competence to make an informed decision, a psychiatrist must also assess you to confirm your eligibility. If the opinion is reached that you are not eligible, the process ends.

If you are confirmed as eligible, you can choose when the medication will be administered. A pharmacy dispenses the medication, which is administered either by the attending doctor or nurse practitioner; or you can choose to self-administer. Your cause of death will be recorded as the terminal diagnosis (for example, metastatic lung cancer).

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