Gus van Soest was just 40 when he decided to end his life, as his body succumbed to an incurable disease. As Kiwis consider how to vote on the euthanasia referendum, his sister reveals the rollercoaster of emotions a family faces when a loved one decides to die. Carolyne Meng-Yee reports.

Despite months of meticulous planning, Gus van Soest was late for his own death.

By this final stage, his body was so ravaged by motor neurone disease that he needed caregivers to dress him for his living wake.

Doctors and donors were waiting at the nearby hospital to receive Gus' organs. Helicopters were on standby ready to deliver them. Timing was everything.

At the age of 40, Garmst (Gus) van Soest had decided it was time to end his life, on his own terms, in his native Netherlands.

Gus van Soest with wife Iris and daughter Zoe. The couple had been married for a year when he was diagnosed with a fatal illness.

For the past five years he had suffered the debilitating and cruel consequences of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease - a rare and incurable neurological disease that aggressively attacks nerve cells.

The condition is inevitably deadly - about 50 per cent of patients survive for less than three years after diagnosis.

The disease robbed Gus of his ability to control his arms and his tongue - over time he lost the ability to talk, walk, eat, write and drive. He depended on 24-hour care as a breathing machine kept him alive.

For the last two years of his life, Gus could only communicate with his eyes.

He used a device on his iPad with two cameras that tracked his eye movements so he could "write" messages. He wanted to use the last method of communication to tell his loved ones he was ready to die.

Gus' sister on euthanasia referendum

Gus' sister Reneke van Soest was living in New Plymouth when her brother received his devastating diagnosis.

Next month, Kiwis will vote on whether or not they support the End of Life Choice Bill.

Having watched her brother's struggle, Reneke believes it is legislation that Kiwis should support.

It's been hard - and heartbreaking - for Reneke to recount her brother's story. But she thinks it's an important one to tell.

On the day of Gus' living wake, on October 23, 2017, Reneke and his soon-to-be widow Iris were busy placing death notices and arranging invitations to the formal funeral after his death.

Reneke recalls wondering if they might not need to post the envelopes, that Gus might call it off on the day he was due to die.

"Normally if you die you don't have the time to do this last-minute stuff. You don't know it is the last minute.

"But we also had this feeling that theoretically, he could still call this off and we couldn't post these until he died," Reneke says.

A handful of Gus' closest friends and carers gathered at his apartment in Utrecht for the living wake - to tell him how much he meant to them. They also promised to look after Gus' wife Iris and their then 3-year-old daughter Zoe.

Gus had bought new stereo speakers for the occasion and played the song Bad Kingdom by one of his favourite bands, Moderat.

"That song summed up Gus," Reneke says.

"The lyrics are, 'This is not what you wanted. Not what you had in my mind. Too tough to fall not strong enough to turn'.

"I felt physically nauseous because I had to stand there like I was addressing a crowd of mourners when I was standing in front of my brother who was alive.

"But because he was enough of a control freak, he would've wanted to know what was said about him."

Final drive to the hospital

After the wake, Gus, Iris and Reneke drove in silence to the local hospital in a special vehicle equipped with a breathing machine.

There were no more intimate conversations to be had.

"Every fibre of your body wants to save him. You don't want him to die, he was my baby brother. He was never meant to die."

But Gus was determined. Despite the condition attacking his nervous system, his body was young and fit and he wanted to donate his liver, kidneys and lungs. His death had to be perfectly timed - other people's lives depended on it.

But they were running late. The drive to the local hospital was slower than planned.

"The drive was slow because Gus' head was strapped to his wheelchair to stop it from wobbling. We held up the traffic," Reneke says.

"He had to die at a certain time because he needed surgery.

"Helicopters were on standby to deliver his organs and donors were waiting for his organs. It was a logistical nightmare and we were half an hour late. The stupid normality of life kept creeping in."

By 3.30pm, Gus was ready. A hospital room was transformed into a lounge with Iris' favourite flowers and Gus' favourite incense burning. His last wish was that everyone meditated to empty their minds for what was to come.

Reneke, Iris and five friends held onto Gus while he was given medication by two doctors, and a series of injections that quickly made him unconscious.

"It took us by surprise. He had one more look at us standing around him and he was gone. His last look was a bit 'panicky'. It was like he was thinking 'Oh shit'.

"He would have felt unconscious but I don't know if you are really ready to give in or give up."

It took Gus 15 minutes to die but it felt like an eternity.

"He was never a quitter."

Gradually Gus stopped breathing and turned pale. His skin went yellow and his lips turned blue.

"Right up until the medication I kept thinking to myself, 'I want to be here, I want to do this for him, I want him to die surrounded by love and warmth but I just didn't want to be there'."

For a moment there was peace - then mayhem.

"There was an army of carers racing him off to surgery to preserve his organs. It felt good knowing he was giving someone quality of life and a part of him lives on.

"But I held onto Gus as he was being wheeled out, then I completely broke down and cried."

A brother's 'brutality and honesty'

Reneke and Gus were so alike they were often mistaken for twins.

"We were emotionally aligned, Gus was someone who completely understood me. He loved good food, kite surfing and travelling. He would do stupid things like miss his plane and convince someone to helicopter him there."

She'll miss his "brutality and honesty", a brother who would look her in the eye and say "Isn't it obvious what you are doing is stupid?"

Gus van Soest, left, and older sister Reneke as university students. The siblings were so close they were often mistaken for twins.

Gus was a Buddhist, a religion seemingly at odds with his job as a strategic consultant working with major European companies. He was involved in restructuring firms and developing business strategies in large corporations throughout Europe.

"The job challenged him but Buddhism kept him sane. So, when the yuppie consultant in the BMW rolls up and changes into a monk robe and meditates - it's a bit odd."

After his diagnosis, Gus was at first angry and in denial. He told his wife and his parents how thankful he was for the life he had, and that he didn't want it to end.

Even though his disease was incurable, Gus was determined to find medication that would control the motor neurone disease.

"It wasn't your usual sausage sizzle, he went all out and raised millions of Euros in funding genetic research, but unfortunately it was too late for him."

When Gus was diagnosed in 2013 - a year after marrying Iris - Reneke knew she had to be by his side and to support the couple. She took six months' leave from her job as a subsurface manager for Origin Energy in New Plymouth to support her family.

Garmt 'Gus' van Soest with his daughter Zoe.

Reneke made multiple trips back and forth to the Netherlands, sometimes with her three children, Metis now 14, Gaion, 12, and Arta, 5.

"Gus seemed so far away - he might as well have been in the South Pole. But I had to be there, I needed to help him, I needed to hug him. I needed to be his big sister."

Iris had just fallen pregnant with her and Gus' first child.

"The pregnancy was almost overtaken by the disease that was progressing rapidly," Reneke says.

"Iris is a beautiful person and had never seen anyone die before. She didn't have a huge amount of life experience with regard to death and its challenges.

"They were also starting a family so there was an intense conflict wanting to do that and knowing she would end up being a solo mum - that was a tough phase."

Family torn over euthanasia

At first, Gus wasn't ready to consider euthanasia and it was an idea that polarised the family - no one wanted to watch him choke to death, unable to breathe even with the help of the machine he was attached to in the final moments of his life.

Gus also knew if he lost control of his eyes, he would not be able to give consent to end his life.

"If he can't consent in theory, he would end up living in a body that was being breathed for him, that was being fed for him, where the only things working was his heart and brain – that would have been a horrible outcome."

Euthanasia is not a simple process, Reneke says.

"It's not as simple as saying to your GP 'inject me please'. There is a lengthy approval process that takes months. He knew at some point his breathing machine would be switched off and knowing you are going to die is not an easy process.

"Gus was in the driver's seat - he chose the timing; he chose who was going to be with him when he died and even though it was a burden it was something he could still control in his life."

Two days before his death, Gus said his final goodbyes to his parents, Otto and Fransje, and his siblings, Jiska and Bernt.

The following day he hugged Zoe, his 3-year-old daughter for the last time.

"That was when Gus broke. When she was handed to her grandparents Gus was almost choking because he needed to cry but he couldn't and the breathing machine couldn't do it for him.

"He bent over and fell on me. With his eyes, he typed, 'All I have to do now is actually physically die'."

Watching her brother suffer and then die has made Reneke determined to the same should she find herself terminally ill with "no end in sight".

"It's not an easy process to go through and I know how it affects those left behind but I also know the beauty it brings in being able to guide someone out of this life."

Gus van Soest chose to end his own life on October 23 2017.

For her, euthanasia is a humane choice.

"If we can choose who we marry, if we can choose who to vote for, if we can choose the type of treatment when we are ill, we should be able to choose what we do when none of those treatments can no longer work anymore."

But there are still moments when Reneke asks herself if Gus was ready to die. Should we have stopped it? Should we have changed the day?

Reneke believes her brother is never far away. She keeps his fleece jacket by her bed.

"I know this seems strange but I occasionally cuddle the jacket and smell him and he's there immediately. I don't know if I believe he is a conscious soul floating around talking to me but there is an energy that I can still feel the essence of who he was."

What does the End of Life Choice Act do?

Kiwis will vote in a referendum on election day, October 17.

• The legislation gives New Zealanders the option of legally requesting help to end their lives - either by doing so themselves (euthanasia) or with the help of a doctor (assisted dying).
• To be eligible, they have to be 18 or older, a New Zealand citizen or permanent resident, and suffer from a terminal illness that is likely to end their life within six months.
• There are further hurdles for eligibility. They need to be in "an advanced state of irreversible decline in physical capability", experience unbearable suffering "that cannot be relieved in a manner that they consider tolerable", and be competent to make an informed decision about dying.
• In response to concerns that the threshold was too broad, the law now explicitly says a person cannot be eligible for euthanasia on the basis of age, mental illness, or disability alone.
• Patients will need the approval of two doctors, each with at least five years' experience. One can be their GP and the other must be independent. If either has doubts about their competence, a third opinion must be sought from a psychiatrist.
• Unlike other euthanasia regimes overseas, a person does not need sworn witness statements from family members about their competence. There is also no requirement to discuss it with family or friends, though doctors must encourage them to.
• Doctors can opt-out of the process, but must advise the patient of their right to contact an official registry to get the name of another doctor who will be willing to discuss it.
• If the two doctors give the patient the green light, the person then chooses a time and date to end their life, whether they will do it themselves or assisted, and the method (ingested or injected).
• A person cannot write an advance directive that they want an assisted death at a later date.
• If at any point a doctor suspects a person is being pressured, they have to stop the process.
• The euthanasia regime will include a registry of willing doctors and a review committee which will report back to government and deal with any complaints.