Two experts who reviewed assisted deaths say they weren't given enough information on cases to be able to detect wrongdoing. Health Minister Dr Shane Reti said the review of the end of life choice act would consider this. New Zealand Herald photograph by Mark Mitchell 2024.
Two experts who reviewed assisted deaths say they weren't given enough information on cases to be able to detect wrongdoing. Health Minister Dr Shane Reti said the review of the end of life choice act would consider this. New Zealand Herald photograph by Mark Mitchell 2024.
Two experts who reviewed assisted deaths say their roles were so limited they would not have been able to detect wrongdoing, and attempts to find out more about concerning cases were blocked by the Ministry of Health.
In one case, a patient suspected of having frontal dementia, who did not speak English, was approved for assisted dying despite not having an interpreter present for their assessment.
The ministry and ministers say these concerns will be addressed in an ongoing review of the law.
Two members of a committee tasked with ensuring assisted deaths complied with the law say the oversight process was so inadequate they would not have known if someone had died wrongly.
The former End of Life Review Committee members said they were “extremely concerned” about how little informationthey received about patients’ deaths and raised it repeatedly with the Ministry of Health and successive Health Ministers.
When they complained about receiving assisted death reports with blank sections they were told by the ministry to assume nothing was wrong - a response which led one of the members to step down from the role. Another member described it as a “tick-box” exercise.
In response, the ministry says there are multiple safeguards built into the law - though it will examine the scope of the committee in a review which is now under way.
Dr Dana Wensley was denied access to more data on assisted dying statistics.
Palliative care specialist Dr Jane Greville and ethics expert Dr Dana Wensley were inaugural members of the three-person review committee when it was set up in September 2021, immediately before the End of Life Choice Act came into force.
The committee is responsible for assessing clinicians’ reports on each assisted death and checking that the law is being complied with. In cases where the law may have been breached, they are required to alert the End of Life Choice Registrar.
In a letter sent to Health Minister Shane Reti in March, obtained under the Official Information Act, Greville said that while the introduction of the new law had been very smooth, the committee had been “constrained to the point of irrelevance”.
Members did not have access to “basic material” including a patient’s diagnosis, prognosis, assessment of capacity, or information which could help detect any hint of coercion. The time at which a patient had their lethal dose of medication was also not included, meaning the committee could not consider cases where death might have taken longer than expected.
While Greville said she had no evidence that anyone had died wrongly, she was concerned that the committee would not be able to detect wrongdoing if it was occurring. She told the Herald it was a “tick-box activity”.
In the absence of detailed information, Greville had instead sourced information informally from the doctors involved. That information often conflicted with the assisted dying reports and gave no reassurance that the law had been followed. “We have been unable to explore these sometimes jarring inconsistencies,” she said in her letter.
‘Extremely concerned’
The two committee members occasionally attempted to raise what they felt were important issues but were told that this was not within the scope of their role.
Wensley became concerned about the unequal distribution of assisted deaths, noting that more of them were occurring in small, rural areas than anticipated. When she sought more data to “check her sense”, it was denied by the Assisted Dying Secretariat, she said in a letter to former Health Minister Dr Ayesha Verrall.
A Ministry of Health spokesperson said Wensley had raised an important equity question and officials had taken it seriously. But the relatively new service lacked enough data to draw conclusions about equity and access, and this would be investigated when a more robust dataset was available - likely to be several years.
The spokesperson also said that such an investigation was not within the committee’s responsibilities and that Wensley’s question had been passed to the ministry’s research team.
On another occasion, a patient suspected of having frontal dementia, who did not speak English, was approved for assisted dying despite not having an interpreter present for their assessment.
Greville said that because this information did not fall within the scope of the committee, a recommendation for interpreters for non-English speakers was not accepted (though she believes that practitioners have been asked to use an interpreter in these cases).
“These are decisions of life and death,” Greville said in her letter to Reti. “As always in healthcare, mistakes are made, and sometimes decisions and judgements turn out to be incorrect. Without adequate review, the processes and the practitioners are extremely vulnerable.”
She added: “I am extremely concerned and have been for some time.”
The ministry spokesperson said the committee was supplied with all the information required for it to perform its role as specified by the law. Advice was sought on the scope of the committee and it was clear that they could only look at the information provided in the death reports.
“While the act may have some limitations in its current form, it operates with multiple safeguards to ensure the act’s requirements are complied with at all stages of an assisted death,” the spokesperson said.
Greville applied to be reappointed in May 2023 but did not hear back until March this year when she said she was told by Associate Health Minister David Seymour that she would not have her term extended.
“I thought my reappointment would have been unlikely given my concerns,” she told the Herald.
In a statement, Seymour said that appointments to the committee were based on ministry recommendations. He said he appreciated Greville’s service and he had thanked her for her contribution.
Act leader and Associate Health Minister David Seymour said his decisions around the appointment of review committee members was based on ministry recommendations. A former member suggested her failure to be reappointed may have been political. Photo / Ben Dickens
The final straw
Wensley’s final straw came when she complained about a malfunctioning IT platform, which meant some assisted death reports were produced with blank sections. In response, the committee received a memo from the ministry which said they should “assume no issues”, Greville said.
The ministry spokesperson said a change in a separate platform run by the Department of Internal Affairs meant that when a clinician had nothing of note to report, it changed the form from “nil” to a blank. After the committee declined to accept this, the ministry began asking doctors to manually enter this data. A new IT platform was expected next year.
Wensley, who is based at the University of Auckland, stepped down last October when her two-year term finished. She told the Herald she had offered to serve another term but after she received the memo from the ministry she decided to resign because she felt it went against best practice.
The ethics expert said that the assisted dying service was generally working well and the health professionals involved were extremely capable - but the oversight process was the one piece of the law which was badly lacking.
Verrall replied to Wensley’s letter to say that the issues she had raised had been recorded by the ministry and would be considered in future reviews. She told the Herald that she asked officials to look into the concerns that Wensley had highlighted.
“Dr Wensley’s tenure on the Review Committee was very much appreciated and I valued her expertise and insight,” she said in a statement.
After Wensley’s departure there was a period between November and March when the committee was not signing off on assisted dying reports at all, Greville said. The reports were still being reviewed by Registrar Kristin Good but without the additional approval of the committee.
Health Minister Dr Shane Reti said the committee's scope will be considered in a review of the law, which is under way. Photo / Sylvie Whinray
The End of Life Choice Act is currently being reviewed by the ministry, as required after three years of operation. In a statement, Health Minister Dr Shane Reti said the review would consider the scope of its various entities. Both Greville and Wensley have made submissions.
Greville said the review was an opportunity to make the oversight process safe, robust and transparent.
“There is no consequence greater than death,” she said.
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. He has covered assisted dying issues since the End of Life Choice Act was first drafted.
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