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Photo: RNZ / Ellie Jay
Since November 2021 terminally ill New Zealanders have had the right to seek a medically assisted death, provisioned by the End of Life Choice Act.
Since then, from more than 1400 applicants, 565 people have had an assisted death.
Not everyone with a terminal illness meets the criteria, but for those who do, researchers say access can be difficult to navigate.
The Ministry of Health is required to review the law in November next year.
Dr Jessica Young, a sociologist and senior research fellow at Victoria University, is leading a team of researchers examining the experiences of people who are using the assisted dying pathways. The study is still underway and data is preliminary.
Fellow team member Dr Jeanne Snelling, a senior law lecturer at the University of Otago, is focusing on legal aspects of the legislation.
Assisted dying is available for those aged over 18 with a terminal illness although there are some provisos.
Dr Young said so far her team has been talking to people who have been found eligible, ineligible or changed their mind about using the service as well as family members.
They were also talking to assisted dying providers and health professionals who have taken care of those who were receiving assisted dying.
She said people were grateful to have the service and most of those interviewed so far were finding it "cathartic" to talk about their experiences.
The study indicated at this stage (with one-third of the data collected) that it was people with "high literacy" skills who were best equipped to "navigate a complicated system".
"And I think there's something in there around being able to articulate that suffering in a way that's convincing to other people.
"If you don't have great language skills then I've heard of people not making it through the criteria because they can't convince someone that this is something they've really considered and thought about and are suffering sufficiently."
The applicant needed to raise the issue in specific language, it could not be suggested by any health professional.
"People need to have the right language, the right awareness, they can struggle to find the information online depending on the right search terms ..."
Rural areas disadvantaged, 'pockets of stigma'
Dr Young said they were being told there were some problems, including the length of time those in rural areas were experiencing. The Ministry of Health reported the process was taking 18 days on average throughout the country.
In initial interviews they were "hearing about pockets of stigma unfortunately. This is a legally available service and health professionals need to refer onwards if they are unwilling to provide that service or unable, but we are hearing some barriers in that way and that some health providers are not providing notes on a patient when that's been requested by an assisted dying provider."
She said it was hard to know what their reasons were, however, her impression was that their actions in not cooperating were deliberate.
Dr Young said the initial debate on assisted dying in the runup to the referendum was polarising, however, on the whole medical professionals were available to be part of the process, although the work had to be done outside of normal clinic hours and this had led to some delays.
If an applicant was given approval but deteriorated and was unable to give the necessary approval to receive the final medication due to their mental state, assisted dying could not go ahead.
"And that can be really disappointing for families, if they've worked really hard to get to this point ...that's what the law says, that's very clear."
Dr Snelling said the law was based on the fact that the applicant's decision must be their own and "free of coercion".
She outlined the conditions applicants must meet under the legislation.
Two or three medical practitioners have to agree a person meets the requirements which include: being a New Zealand citizen, suffering from a terminal illness that was likely to end their life within six months, experiencing irreversible decline or capacity and suffering unbearable pain that can't be relieved.
The person must also have enough mental ability to make an informed decision on assisted dying. The third clinician is sometimes called on if there is concern around the applicant's mental capacity.
Dr Young said in the first year about 70 people out of 600 applicants changed their mind on going through with assisted dying.
About 300 people died before they were able to receive the final medication although she warned some of the Ministry of Health data reporting was "slightly ambiguous".
She would like to know more about the demographics of those who went ahead and those who did not as well as their experiences of using the service.
On ethnicity, 80 percent were New Zealand European or Pākehā while 5 percent were Māori and 2 percent identified as Asian. Around 13 percent were the category of 'other ethnicity'.
* This story has been updated on 13/12/2023 to clarify further the preliminary nature of the study's data.