NZ euthanasia laws: Taupō woman with degenerative disease denied dignified death by terminal illness rules

Martin’s relentless decline in health started with severe daily joint dislocations and constant pain in her early 30s.

“I’ve been on prescribed opioids from age 27.

“I could only ever do about two days a week of work, and had to keep reducing everything, I could no longer exercise.”

Martin said she inherited Ehlers-Danlos Syndrome (EDS) from her father, who died at 53.

Her social life deteriorated as she prioritised work, spending the rest of the week recovering until she wasn’t able.

“My right arm kept dislocating, so that was excruciating.

“My body just started falling to bits.”

This has progressed to multiple organ failures, numerous surgeries, including bladder removal and requiring a urostomy bag.

“I don’t get to go outside because I can’t tolerate temperature fluctuations.”

She faces excruciating unmanaged pain, organ dysfunctions, severe allergic reactions, chronic kidney infections, frequent bowel obstructions, intestinal failure and choking from most ingested liquids, which aspirate into her lungs.

“There’s a lot of resistance to the bill in regards to religion, and I respect everyone’s beliefs. But if you actually know the reality of what it’s like to live like this … it certainly changes their perspective.”

At age 39, Martin’s back “completely collapsed”, and at 41 she suffered a shoulder dislocation so bad she lost blood flow to her arm.

“I had so many hobbies, I used to sing and dance and paint.

“But after the shoulder thing, I could no longer do anything. I could no longer write with a pen, I have to use speech to text with my phone.

“It’s so devastating, people think I just sit around and do my hobbies … each hobby just progressively got taken [by chronic pain].”

With all of the physical pain Martin goes through, there is no mental rehab or release.

“It’s like having a full-time job 24 hours a day keeping yourself alive.”

Martin understands it’s a hard thing for people to stomach, the idea of ending your own life, but in her view, a law change would allow her to die with dignity, instead of in misery.

Her husband of 15 years is one of the people she’s had to convince.

“Over the years he’s witnessed the progression … for many years he wanted me to fight.

“It’s so heartbreaking because neither one of us want me to go, we want to be together, but it’s so unbearable.

“He accepts where I’m at now, and what I’m doing [supporting the law change].”

Martin said if she was accepted into the end-of-life process, she would have her power back and no longer feel trapped.

Just having the option of an assisted death would be a huge relief, she said.

“Having the option to plan it and have a really nice day, and have some food I haven’t eaten in 10 years, and have my family and friends here.”

Martin said she just wanted the treatment her pet dog received when it passed away.

“We recently had to put down our dog, Abbie, because her suffering was too immense and we couldn’t keep her around anymore for our own satisfaction.

“Her last day was beautiful, she got to have beautiful treats, she got so much love and affection, we gave sedatives so she wasn’t stressed, she just had an injection and went to sleep in our arms.

“She had a right I don’t have.”

Social Justice Aotearoa CEO Jackie Foster created a petition to change Section 5(c) of the End of Life Choice Act to enable people suffering from degenerative diseases to use the end-of-life legislation.

“I have known Nicole for 25 years having met her as she lived on a neighbouring property to us, becoming lifelong friends.

“When the end-of-life referendum went to the vote, I voted no, but now having lost a family member to cancer and seeing Nicole’s journey on a personal level, I have thought about it and now support the legislation.”

Foster said it was hard for people to understand how bad it could be to live with a degenerative illness until someone close to them was affected.

“It’s so traumatic … it opens your eyes, it’s pretty horrific what people go through.”

Foster said Social Justice Aotearoa was set up as a voice for the voiceless in the community.

“Many people suffer from cancer in this country, cancer that will not take their life within six months, but they still suffer a terrible death.

“Why can’t someone with a terminal illness that is going to take their life, choose to die a dignified death?”

Foster said some people with degenerative illnesses may not be terminally ill but weren’t able to live a fulfilling “life” if they were bedridden, unable to see friends and family.

“It’s just about trying to make change for the better.”

The petition is live on the parliamentary website and signatures are being accepted until April 8.

A group of doctors who perform assisted dying in New Zealand wrote an open letter last year, calling on the Government to change the arbitrary deadline.

A third of the ineligible patients who were declined assisted dying in the law’s first year were declined because they didn’t meet the terminal criteria.

The same criticism was previously raised by the law’s architect, Act Party leader David Seymour, who maintains the law needs to change.

“The six-month timeline is something I never supported,” Seymour said.

The limit was put in place “purely as a political compromise because there were some people unwilling to vote for it in the original form”, Seymour told the Herald last year.

Despite his support for the change, Seymour said he hadn’t had a discussion with the National Party about broadening the law.

A review of the legislation will commence in November 2024.