Rosemarie knew she was dying. She made a choice that saved three lives

Saturday, 27 December 2025

Rosemarie Johnson has become the first New Zealander to donate their organs after an assisted death, chosen as motor neurone disease rapidly took over her body. Nicholas Jones reports on that trail-blazing act of altruism - and the ethical challenges and debate surrounding assisted dying organ donation, which has happened in only a handful of other countries.

Muscle cramps were the first sign Rosemarie Johnson’s nerve cells were dying. Then came brain fog, headaches and lower back pain.

The strength and coordination needed for everyday tasks abandoned her. She couldn’t brush her teeth, or grip the cup of tea she’d spent so much time making.

Within four months of her January 2024 diagnosis of motor neurone disease (MND) she was in a motorised, head-controlled wheel chair she named after Sir Stephen Hawking.

A medication made her unbearably itchy - like bugs scurrying under her skin, she complained - but she couldn’t move her arms or fingers to scratch herself.

A life-long learner, she threw herself into researching her type of motor neurone disease.

Amyotrophic-lateral sclerosis, or ALS, causes a progressive degeneration of nerve cells (motor neurons) in the spinal cord and brain, which control voluntary muscle movement.

The brain keeps sending messages for muscles to move, but these are no longer received. Muscles weaken, atrophy, stiffen and twitch.

People slowly lose control of their bodies, including speaking, eating and breathing. There is no known cure, and most people die from respiratory failure.

Rosemarie decided on an assisted death. Immediately after a phone call to authorities to register that intent she called Organ Donation New Zealand (ODNZ).

That took the organisation into uncharted territory - there had been inquiries from people with serious illnesses since the End of Life Choice Act came into force in November 2021, but no donation had gone through.

Donation had instead been restricted to a living donor (only kidneys or part of a liver) or a deceased donor - possible only when a person is on a ventilator in one of 24 intensive care units across the country, usually with a devastating brain injury.

ODNZ staff met Rosemarie - a novel undertaking given they usually hold such sensitive conversations with the close family of people on life support.

She braved multiple organ scans and blood tests, always with her usual smile.

On her chosen day, family and friends gathered in Takanini, South Auckland, where she and husband Johnny settled after emigrating from India with their young daughters in 1994.

Rosemarie and the family then took a bus sent by ODNZ and were taken to a hospital room dotted with flowers and candles.

Vedic chanting played through a speaker as the family surrounded their matriarch - daughters Nancy and Natasha holding a hand each, niece Sujatha at her feet, Johnny cradling his beloved’s head, with son-in-law Ryan at her shoulder.

“She closed her eyes and just kind of meditated through it,” Nancy says. “Then there was a breath that went in, and she exhaled really strongly.”

That seemed to be her final breath - sometimes called the agonal or terminal breath - but a monitor showed her heart was still beating.

Rosemarie’s daughters moved to cradle her jaw, which had gone slack but was still warm. Finally, her heart slowed to a stop.

It was the end of a life that began halfway across the world, in a remote village in Southern India. No birth date was officially recorded and her father gave a different version to put Rosemarie, the youngest of nine, into school, meaning she had two: 1955 and 1956.

Rosemarie always said she was older, not younger, and had the final say - her time of death was 19:55.

Medical teams wheeled her into a surgical theatre. Her kidneys were successfully transplanted into two patients, who were ready in nearby theatres with specialised surgical teams.

Rosemarie’s lungs gave life to another recipient, and her brain tissue was donated to the University of Auckland, to aid the search for a cure.

“Her body was a failing vessel, but it was just a vessel,” says Nancy. “Her spirit, her wairua, was so much more than that. She was so generous.”

A million dollar smile

Rosemarie met Johnny in September 1978, when both worked at the Raman Research Institute in Bengaluru (Bangalore), which focuses on astrophysics and astronomy (Nancy likes to say her parents fell in love under the stars.)

“I was just 21 years old, it was almost love at first sight,” says Johnny.

“She had this million dollar smile, and lit up any room. She was a very dynamic, charismatic, loving personality. She could talk on any subject - history, geography, science - and was an extreme extrovert. She always wanted to be in a crowd.”

Such a love match was uncommon, and theirs was taboo - Johnny was Catholic and Rosemarie a Hindu of the upper Brahmin caste.

Her father, who died of a heart attack when she was 6, was a trained doctor but couldn’t practice during that period because Brahmins weren’t allowed to touch those in the lower castes.

When her mother learnt of her intention to marry Johnny she made the fallout clear.

Rosemarie converted to Catholicism and wed before professors and students, but no family. In 1983 Natasha was born - news hailed on blackboards usually devoted to astronomy research discussions - followed by Nancy in 1988.

They decided to leave India, and received visas for Canada, Australia and New Zealand. Johnny leaned towards Aotearoa after being deeply impressed in high school by a speech given by the visiting NZ High Commissioner, Sir Edmund Hillary.

The decision was sealed after he went for his interview in Delhi. A younger man in shorts and singlet showed him into an office, and, to his surprise, sat down in the Consul General’s chair.

“We talked about various things, mostly cricket … he said, ‘Give me your passports’. He went inside and put permanent residency stamps in all of them,” Johnny says.

“He made me very comfortable. I did not have that experience in the Australian or Canadian commission. I said to myself, ‘If someone treats me like that, this is where I'm going.’”

One issue - there weren’t many jobs in radio astronomy, and he was overqualified for those that did exist, having two master’s degrees in telecommunications and engineering.

He eventually secured work at the Glenbrook Steel Mill, where he quickly rose to become a networks infrastructure manager, a job he holds 31 years later.

In May 1994, Rosemarie, Natasha, 11, and Nancy, 6, flew to join him. The transition from Bangalore to Waiuku was brutal and isolating.

Rosemarie worked to adapt, gamely adopting a neighbour’s recipe for fish pie and cheese potato bake, and taking on jobs below her own qualifications (a masters in economics and arts), including at a Nestle factory, house cleaning, and picking capsicums and delphiniums.

Work was a way to safeguard her independence, Nancy says, having grown up observing women trapped in traditional, house-bound roles.

“She drummed that into me my entire life - ‘Don’t rely on a man to make the money or to be the sole earner.’”

Rosemarie’s career spanned the Franklin council, University of Auckland, Westpac and different government departments, during which time she studied accounting, finance and anthropology.

She and Johnny stayed in their Takanini home as Natasha and Nancy moved out and had their own families.

Plans to use her looming retirement to complete a PhD in anthropology or sociology were derailed after her ALS symptoms began.

A GP advised her to not catastrophise. She pushed for a second opinion, but another doctor in the same practice also said not to worry.

Rosemarie insisted on a specialist referral, and in September 2023 Nancy took her for an MRI at a clinic in Ellerslie. Her mum couldn’t undress herself, or even lift her arms up.

She saw the specialist two months later, who sent her to a neurologist. Rosemarie held on to Johnny to walk into that appointment, on January 4, 2024.

The neurologist pressed the fleshy area of her hand at the base of the thumb, and realised the muscle had wasted away. Rosemarie couldn’t complete other test exercises.

The probable diagnosis of motor neurone disease wasn’t a surprise - Rosemarie suspected as much, and knew it was a death sentence. On the drive home she told Johnny she wanted both an assisted death, and to donate her organs.

She was soon in a wheelchair that could be operated by her head movements, given her hands and fingers had lost their function.

Rosemarie refused to withdraw, however, which was evident during a “Cuppa Tea for MND” event organised by Motor Neurone Disease NZ, where she whizzed between attendees, intently listening to their experiences.

“She wanted to understand what other people were feeling, so she didn’t feel alone, but also so they didn’t feel alone,” Nancy says. “She was still making something of it all, she was silver linings, all the time - have hope, be brave.”

Her physical decline was traumatic, however. Johnny took on a huge carer’s workload - doing everything for his wife, including dressing, bathing and toileting her. She dictated recipes, which he wrote down then carefully cooked, feeding her a mouthful at a time.

“Dad stepping up was incredible,” Natasha says. “She'd always looked after my dad, and so this was almost a way for him to say, ‘This is what unconditional love is, to the day we die.’”

The family eventually employed a nurse. Nancy often visited to help, and was heartbroken to see her mum in pain and irritation.

“She was sick of being moved around. Mum wanted to be able to scratch her head without having to ask Dad to do it, or brush her teeth, wash, have the common decency of being able to undress herself.”

The case against assisted dying donation

The path Rosemarie followed to have an assisted death was relatively well-trodden - 472 people did so in the 12 months to March 31, 2025, having met criteria including having a terminal illness likely to end their life within six months, and experiencing unbearable suffering.

However, she would be the first to then donate her organs.

ODNZ, which coordinates donations and is part of the blood service, had since 2023 worked with health officials to develop a strategy for assisted dying donation.

The experience of other countries was reviewed, and consultation was done with clinicians, nurses, bioethicists, lawyers, university lecturers, palliative care, health and Māori tikanga experts, the disability community, transplant teams and the national clinical ethics committee, an independent advisor to the Health Minister.

That work wasn’t complete, however, when Rosemarie made her phone call.

There were examples to follow, however. Organ donation after assisted dying happened in Belgium for 20 years, and in the Netherlands (since 2012), Canada (2016), Spain (2021) and Australia (2023).

ODNZ staff contacted their equivalents in Australia and Canada to review their protocols.

“But mostly this was done working with Rosemarie and her whānau - we very much recognised that we were going to have to learn on the job,” says Dr Jo Ritchie, the clinical director for ODNZ.

“Rosemarie was instrumental in helping us make this work in the Aotearoa New Zealand context and guided us in individualising the process for her and for future people.”

Ensuring someone has as good a death as possible is the priority for clinicians, says Ritchie, an intensive care doctor.

“If part of that process was to help them fulfil a wish to be an organ donor, then it felt like the right thing to do.”

Since Rosemarie, one other person has donated an organ or organs after an assisted death. Three others have donated tissue (which can include eye tissue, heart valves and skin).

ODNZ believes there will be one or two assisted dying donations a year - a modest boost to donation rates which have stalled well below comparable countries. Unmet need is difficult to measure, but around a third of people put on the waiting list for a kidney won’t receive one.

A study of assisted dying patients in Belgium estimated 10% were likely to be medically suitable for organ donation. In Quebec, rates increased from about 5% of assisted deaths to 14%, from 2018 and 2022.

However, the issue is controversial. Ethical challenges include ensuring no element of coercion exists (perceived or otherwise).

Some opposition is strident. The Daily Signal, a conservative news outlet founded by the conservative Heritage Foundation in the United States, recently published a column headlined, “We’re heading into the organ harvesting stage of assisted suicide.”

ODNZ has finalised an “ethics framework”, released to Stuff and which sets out key principles including that “the decision to pursue assisted dying donation is separate to the decision to pursue assisted dying, and should only be explored once the patient’s decision to pursue assisted dying has been made and the patient is confirmed as eligible for assisted dying”.

If ODNZ is approached before this point, “any further discussion would be respectfully deferred”.

Another principle: “Donation should involve a fully informed first-person consent, free of coercion, with sufficient time for discussion and consideration.”

Proposed safeguards include medical professions involved in assessing someone for an assisted death having no role in getting consent for organ donation.

“Assisted dying and organ donation providers must be satisfied that enabling donation is not the principal reason for the individual to choose assisted dying. This will involve consultation between the two sets of providers.”

On the question of how, if at all, organ donation is raised once an assisted death is approved, ODNZ’s preferred option is that the opportunity is outlined in paperwork given to the applicant.

Another issue: could someone donate an organ to a specific individual, such as a family member on dialysis in need of a kidney?

This could “raise the potential for undue influence”, the document acknowledges, and donation and transplant teams would need assurance no such coercion existed.

“Directed donation would not be offered or encouraged in assisted dying donation conversations but could be considered on a similar case-by-case basis as currently occurs.”

In New Zealand, people who receive donated organs aren’t told who they come from. Should they know if the person had an assisted death, in case they are morally or religiously opposed?

Currently, only increased medical risks (such as some infectious diseases) are disclosed to recipients, ODNZ notes, and assisted dying donation doesn’t fall within this obligation, given there are no risks to organs from assisted dying medications.

“Organs may be currently transplanted from donors who have died through suicide. There is no obligation to disclose this to the recipients even though they may have a moral objection to suicide.”

Dr John Kleinsman, director of the Catholic organisation The Nathaniel Centre for Bioethics and an opponent of assisted dying, told Stuff that position “violates the autonomy of the organ recipients”.

“To argue that the way in which the organs were obtained somehow does not matter is to take a narrow and objectified view of body parts - to treat them no differently to the way one might purchase used parts for one’s vehicles, for example.”

Kleinsman says ODNZ’s consultation was with a small group of “insiders”, “seriously inadequate”, and underplayed serious social consequences of assisted dying donation, including the impact on health workers.

“The organ retrieval team … become inherently linked with the act of directly, intentionally and prematurely ending a patient’s life [which] amounts to an erosion of the legally guaranteed rights of doctors caring for patients outside of assisted dying.”

It’s easy to understand how organ donation could become a significant motivator for an assisted death, Kleinsman says, “and, perhaps in time, even an expectation”.

“If people are persuaded, even with their own clear consent, to do something they would not have otherwise done, this slips closer and closer to coercion.”

A last goodbye

Rosemarie talked to both a Catholic and Hindu priest before deciding on assisted dying donation. She was sure in her choice and utterly incoercible, Nancy says.

“I couldn't even coerce her to not have an open casket … on the bus [to the hospital], she said, ‘Don't you try to change my mind now - I want everyone to see me’. And that was it.”

Rosemarie brought the date of her death forward after she was hospitalised with Covid-19, and faced the prospect of dying away from family, in isolation.

She chose a date that wouldn’t interrupt Nancy’s PhD research and that was, according to Vedic astrology, auspicious.

The family - including her grandchildren Sebastian, 13, Gunnar, 9, Jethro, 8 and Sterling, 5 - gathered for a champagne breakfast.

“My going is nothing new, because when you are born, you will grow, then die. That's what it is in my situation, slightly different, because I get to choose the date, the time,” Rosemarie told them, her speech slurred by her advancing disease.

“Everything is wonderful. Keep up the spirit - have parties, be with friends, be with people. Enjoy life to the fullest. Do not shy away from being happy … [it’s a] very short life, time will fly, just like that.

“Bring up your children, be with your family. Enjoy every bit, every movement, everything that you can possibly do. And I love you all.”

She turned to her husband, their eyes locked with a bond forged over 46 years.

“Johnny, you are my best companion in my life, and I thank you for everything,” said Rosemarie, her voice changed now from love, not sickness.

“You have shown the best love for me in the last year … thank you for the journey.”

Speeches were made in return.

“At funerals you might say what you wished you’d said. But you got to say it right to her,” says Ryan, Nancy’s husband. “You know that she knew it.”

Natasha wept listening to her mum, thinking of her bond with her grandchildren and all she’d planned to do with them in retirement.

“When the bus picked us up, I said to myself, ‘Right, this is mum’s end of life journey, not me losing my mum - that journey will come after.’”

Her absence is unbelievable - months after her death Nancy asked Ryan why she hadn’t called to check-in, and Natasha is still in denial the kind, charismatic woman who was the life of the party and whose door and ear was open to anybody is gone.

The family is proud of her legacy, and know she’d approve of this article.

“She was a storyteller,” Nancy says. “She understood people, she loved people, and she wanted to show what people are capable of.”