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.
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.
A terrible terrible ordeal.
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’.”
Isn’t an ending like this (while still very sad) vastly preferable to the alternative if he lived in a country where there was no choice?
Worth reading the entire article. Very moving