In early 2022, Sarah Smith was ready to die. She had battled chronic health conditions for a third of her 74 years.
“I’m on my way out,” she told her family. “I know I’m on my way out.”
Smith, from Mt Cook in Wellington, had lived a full life. She worked in foreign aid at the Ministry of Foreign Affairs, leading a student exchange programme. An enthusiastic cook, she later ran the cafe Zephyr, just off Lambton Quay, where her rhubarb muffins were so popular they usually sold out by 9.30am. She was an amateur actor, once playing Olivia in Shakespeare’s Twelfth Night, but turned down an offer to become a professional because it would not support her two children, Andrew and Victoria. She drafted a novel and volunteered for the Samaritans.
Her health problems began to stack up at age 48. She was diagnosed with myalgic encephalomyelitis (also known as chronic fatigue syndrome) and later Ehlers-Danlos syndrome, which affects connective tissue in the body and leads to highly sensitive skin and joints. In her early 50s, she had a brain hemorrhage, which severely affected her speech, her ability to walk and the use of one of her arms.
By her late 50s, Smith was in such chronic pain she had to lie down most of the day. Over the next 20 years, her pain worsened and mobility reduced. A geriatrician who treated her in 2020, when she was 70, said she had the health of a person 20 years older, and her treatment should shift to palliative care.
Her husband, Ian Johns, said Smith was a believer in assisted dying and voted “yes” in the End of Life Choice public referendum in 2020.
“Sarah felt she was very determined that’s what she would like to do,” he told the Herald. “She knew she wasn’t going to get any better, and she wanted to die with some dignity.”
In May 2022, Smith applied for an assisted death and was assessed by a GP and a specialist.
She met most of the criteria, Johns said. The requirements include having a terminal illness, being in an advanced state of irreversible decline, experiencing unbearable suffering that cannot be relieved to a tolerable level, and being competent enough to give informed consent. There are also extra safeguards in the law: patients cannot apply purely on the basis of a mental illness, disability, or age.
But Smith failed a key test. Her two assessing doctors could not say with confidence that she was likely to die within six months. Her application was declined.
“She was clearly disappointed,” Johns said. “And what happened after that was totally predictable - she had a terrible time.” Smith became more agitated and afraid. Her memory faded, she struggled to digest food, and she had to wear nappies for incontinence. She needed 24-hour nursing care and was placed in the Te Hopai care facility in Newtown. Her pain was unrelenting.
Smith died in Wellington Regional Hospital in October 2022. It was almost exactly six months since her assisted dying application was turned down.
The End of Life Choice Act will be three years old in November, at which point a statutory review must be completed.
A key issue that has emerged in the last three years is that it is extremely difficult to predict when a terminal patient may die, especially non-cancer patients.
Partners and families – exhausted with caring and wrung- out with watching their loved ones suffer – present one view: that death should be enabled.
Another view is that the state is responsible for protecting its citizens against abuse, and that the law should not eased without extreme caution - or further safeguards.
Removing the six-months-to-die rule is the top priority for assisted dying campaigners who are submitting to the Ministry of Health’s review.
The End of Life Choice Society, an advocacy group which engages frequently with the ministry, said the clause excluded a large number of patients, especially those with neurogenerative diseases like motor neurone disease (MND) or Huntington’s disease. It was more difficult to predict when people with these conditions would die because they did not decline in a linear way.
The society’s president, Ann David, said the law was working well - but for a narrow group of people, mainly cancer patients.
“Some of our members would love to have cancer,” she said. “Because they know that if they had cancer, they would be able to escape the suffering they’ve got now.”
Her organisation says the six-month rule should be replaced with a requirement for a patient to have a “serious, irremediable and life-limiting medical condition”.
This was similar to the wording in the original legislation, drafted by Act Party leader David Seymour. He has previously said he reluctantly added the six-month clause to secure enough political support to pass the law.
The “irremediable and grievous suffering” proposal is based on Canadian law, which is one of the least restrictive assisted dying regimes. The Canadian system initially limited assisted dying to a patient whose death was “reasonably foreseeable”. This requirement was amended in 2021 because it was considered too restrictive.
New Zealand’s six-month rule for all assisted dying applicants is an outlier among jurisdictions which offer the service. Most Australian states have two-tiered criteria - 12 months for patients with neurodegenerative conditions, and six months for others. Queensland applies the 12-month threshold for all patients.
Removing the clause in New Zealand would likely open up access to a much larger group of terminally ill patients. Up until the end of March, 775 people have had an assisted death. Around 70% were cancer patients, for whom estimating a likely time of death was relatively uncomplicated.
In the first year of the Assisted Dying Service, 65% of the patients who were deemed ineligible for the procedure failed to meet the six-month test (they may have also failed other criteria). In the second year, 73% of ineligible patients did not meet this test.
Predicting death is still an imprecise science, clinicians told the Herald.
When a doctor says a patient is going to die in two weeks, they are almost always right. Similarly, doctors can accurately predict that a person will die in 12 months around 70% of the time.
Between those two points is a window of uncertainty, where predicting time of death is much more difficult.
“Our law falls right in the middle of that range,” said Dr Gary Payinda, an emergency medicine specialist in Whangarei who provides assisted dying services on his days off.
Payinda said in his experience, a large number of applicants who failed the six-month test reapplied one or two months later when their health had deteriorated further. At this point, they were usually “gravely disabled” and unlikely to live for long enough to go through the application process again.
“So it’s a Goldilocks problem,” Payinda said. “These poor patients are either too healthy or too sick to qualify for assisted dying. And I’ve seen this play out time and time again.”
He is pushing for the requirement to be extended to 12 months.
Dr Jane Greville, an Auckland-based palliative care specialist, said the six-month timeframe appeared to have been “plucked out of the air” and was not based on clinical evidence but “what made New Zealanders comfortable”.
Greville, who was previously a member of the Ministry of Health’s End of Life Choice Review Committee, did not hold a strong view on whether the six-month clause should be removed. But she believed there should be an additional safeguard when estimating the likely time of death for a patient with a long-term, non-cancer condition.
She said a patient’s prognosis should not be determined without talking to the key physician involved in their care.
“I’ll give you an example. So MND [motor neurone disease] is a really mixed condition. Some people get it and deteriorate really quickly. Some people, like Stephen Hawking, live for 20 or 30 years. I do not believe that anybody should be able to prognosticate for these patients except the people who have been their long-term neurologist, because they’re the people that sort of know where they’re sitting, they’re the people that are dealing with this relatively rare condition all the time.”
Greville said she was aware of a leading motor neurone specialist who had 15 patients who died through the assisted dying service. The specialist was only consulted on around half of these cases, she said.
The Ministry of Health will report back to Parliament on its findings in November. There is no guarantee anything will change. While the review is mandatory, the Government is not required to act on its recommendations.
Any subsequent law change is likely to be left to a private member’s bill. It can take years for a bill to be pulled from the ballot - unless an MP can secure 61 non-executive votes to skip the lottery process. The next ministry review will take place in five years.
Seymour has expressed doubt about whether there is appetite for change within the current Parliament, noting the existing law was passed by a more socially liberal group of MPs in 2019.
“There are people within the current Cabinet who voted against the End of Life Choice Act as it stands now, let alone potentially expanding it,” he told the Herald earlier this year.
In her final months, as her body failed, Sarah Smith was determined to keep her brain ticking. She began crocheting a jacket, though she only had partial function in one of her hands. Because her memory was weak, she had to start fresh each day, relearning how to crochet by watching YouTube videos.
“It was extraordinary to watch given her physical difficulties and, to me, a seemingly overwhelming mental challenge,” Johns said at her funeral. She remained positive through her trials, he said.
Just before her death, there was a final blow. A scan at Wellington Regional Hospital found she had an aggressive form of brain cancer. That diagnosis would have almost certainly qualified her for assisted dying. But it was too late to go through the process again. She died a week later.
“I loved her dearly,” said Johns, who was married to Smith for 54 years. “Having her continuing to be with me was a good thing for me. I thought, ‘We have been so close throughout our marriage. I like being with you even though it takes a huge amount of life and energy to care for you’.
“But to see her suffering was the hardest thing in my life. Just watching what she was going through was just heartrending.”
Isaac Davison is an Auckland-based reporter who covers health issues. He joined the Herald in 2008 and has previously covered the environment, politics and social issues.