WARNING: This story discusses suicideÂ
A New Zealand woman with multiple degenerative illnesses is begging the Government to change the assisted dying rules so she can die with âdignity.âÂ
The End of Life Choice Act 2019Â currently requires that a patient has a âterminal illness likely to end the personâs life within six monthsâ.Â
But New Zealanders with degenerative, not necessarily terminal, diseases say the restrictions of the law are leaving them in severe pain without an end in sight.Â
TaupÅ woman Nicole Martin says she applied to die with âdignityâ under the end-of-life legislation but didnât meet the criterion of having a doctor certify that her illness was terminal.Â
Despite meeting four out of the five criteria for assisted dying at age 50, she is unable to prove a six-month life expectancy, leaving her feeling trapped.Â
âI should have died 10 years ago.âÂ
Martinâs relentless decline in health started with severe daily joint dislocations and constant pain in her early 30s.Â
âIâve been on prescribed opioids from age 27.Â
âI could only ever do about two days a week of work, and had to keep reducing everything, I could no longer exercise.âÂ
Martin said she inherited Ehlers-Danlos Syndrome (EDS) from her father, who died at 53.Â
Her social life deteriorated as she prioritised work, spending the rest of the week recovering until she wasnât able.Â
âMy right arm kept dislocating, so that was excruciating.Â
âMy body just started falling to bits.âÂ
This has progressed to multiple organ failures, numerous surgeries, including bladder removal and requiring a urostomy bag.Â
Nicole Martin before her decline in health, which began with constant pain in her early 30s.Â
âI donât get to go outside because I canât tolerate temperature fluctuations.âÂ
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.Â
âThereâs a lot of resistance to the bill in regards to religion, and I respect everyoneâs beliefs. But if you actually know the reality of what itâs like to live like this ... it certainly changes their perspective.âÂ
At age 39, Martinâs back âcompletely collapsedâ, and at 41 she suffered a shoulder dislocation so bad she lost blood flow to her arm.Â
âI had so many hobbies, I used to sing and dance and paint.Â
âBut 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.Â
âItâs so devastating, people think I just sit around and do my hobbies ... each hobby just progressively got taken [by chronic pain].âÂ
With all of the physical pain Martin goes through, there is no mental rehab or release.Â
âItâs like having a full-time job 24 hours a day keeping yourself alive.âÂ
Martin understands itâs 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.Â
Her husband of 15 years is one of the people sheâs had to convince.Â
âOver the years heâs witnessed the progression ... for many years he wanted me to fight.Â
Abbie, Nicole Martin's dog, which was put to sleep after a three-and-a-half-year battle with a neurological condition that could not be treated.Â
âItâs so heartbreaking because neither one of us want me to go, we want to be together, but itâs so unbearable.Â
âHe accepts where Iâm at now, and what Iâm doing [supporting the law change].âÂ
Martin said if she was accepted into the end-of-life process, she would have her power back and no longer feel trapped.Â
Just having the option of an assisted death would be a huge relief, she said.Â
âHaving the option to plan it and have a really nice day, and have some food I havenât eaten in 10 years, and have my family and friends here.âÂ
Martin said she just wanted the treatment her pet dog received when it passed away.Â
Nicole Martin applied to die with dignity under the end-of-life legislation but didnât meet the criteria of having a doctor certify that her illness was terminal.Â
âWe recently had to put down our dog, Abbie, because her suffering was too immense and we couldnât keep her around anymore for our own satisfaction.Â
âHer last day was beautiful, she got to have beautiful treats, she got so much love and affection, we gave sedatives so she wasnât stressed, she just had an injection and went to sleep in our arms.Â
âShe had a right I donât have.âÂ
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.Â
âI have known Nicole for 25 years having met her as she lived on a neighbouring property to us, becoming lifelong friends.Â
âWhen the end-of-life referendum went to the vote, I voted no, but now having lost a family member to cancer and seeing Nicoleâs journey on a personal level, I have thought about it and now support the legislation.âÂ
Social Justice Aotearoa CEO Jackie Foster wants to enable people suffering from degenerative diseases to have the option to use end-of-life legislation.Â
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.Â
âItâs so traumatic ... it opens your eyes, itâs pretty horrific what people go through.âÂ
Foster said Social Justice Aotearoa was set up as a voice for the voiceless in the community.Â
âMany people suffer from cancer in this country, cancer that will not take their life within six months, but they still suffer a terrible death.Â
âWhy canât someone with a terminal illness that is going to take their life, choose to die a dignified death?âÂ
Foster said some people with degenerative illnesses may not be terminally ill but werenât able to live a fulfilling âlifeâ if they were bedridden, unable to see friends and family.Â
âItâs just about trying to make change for the better.âÂ
The petition is live on the parliamentary website and signatures are being accepted until April 8.Â
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.Â
A third of the ineligible patients who were declined assisted dying in the lawâs first year were declined because they didnât meet the terminal criteria.Â
The same criticism was previously raised by the lawâs architect, Act Party leader David Seymour, who maintains the law needs to change.Â
âThe six-month timeline is something I never supported,â Seymour said.Â
The limit was put in place âpurely as a political compromise because there were some people unwilling to vote for it in the original formâ, Seymour told the Herald last year.Â
Despite his support for the change, Seymour said he hadnât had a discussion with the National Party about broadening the law.Â
A review of the legislation will commence in November 2024.Â
SUICIDE AND DEPRESSIONÂ
Where to get help:
â¢Â Lifeline: Call 0800 543 354 or text 4357 (HELP) (available 24/7)
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â¢Â Depression helpline: Call 0800 111 757 or text 4202 (available 24/7)
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If it is an emergency and you feel like you or someone else is at risk, call 111
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