76-year-old Gilbert Rooms was one of almost 3,000 people who availed of assisted dying in Belgium last year. Prime Time's Louise Byrne met his wife Hedwig Vrancken in Antwerp to get one perspective on euthanasia.
On the final day of his life, Gilbert Rooms decided to dispense with eating regular meals and stuck simply to his favourite drink: cava.
The 76-year-old had battled Motor Neurone Disease (MND) for five years and was spending his last months at the Coda hospice near his home in Antwerp, Belgium.
In music, a coda is the final part of a piece which is added to finish it off in a pleasing way.
In a family video taken moments before he died, Gilbert is sitting in his bed as Hedwig gently strokes his arm.
Folk singer Sandy Denny's track 'Who Knows Where the Time Goes’ is playing in the hospice room.
‘Across the evening sky, all the birds are leaving.
But how can they know it's time for them to go?’
- Sandy Denny
"There was always music playing all day long," Hedwig remembered as we talked over coffee in the family’s suburban home. It is almost a year since her husband’s death and emotions are still raw.
Married in 1968, the couple had one son, Bart, and built a life together.
Gilbert, who worked as an English teacher, loved travelling and regularly brought his language students overseas. He was a foodie who was passionate about current affairs, literature and sport.
Hedwig described him as a man with tremendous willpower and zest for life, which may help to explain both his longevity post-diagnosis and his insistence that the end would be on his terms.
Following his diagnosis in 2018, Gilbert decided he wanted to be helped to die once he couldn’t speak or swallow, a decision permitted under Belgium’s 20-year-old euthanasia laws.
Read more: Should Ireland allow euthanasia? We went to see how it can work
As his MND progressed, his bicycle became a bellwether. He was able to get on the bike, but not off again. Hedwig described how he would cycle in circles while waiting to cross the road.
Gilbert’s condition continued to deteriorate. During the couple’s final holiday in France, despite his best efforts, he could no longer cycle or swim.
Hedwig recounted how her husband was eventually forced to wear a BiPAP breathing machine.
He lost the movement in his legs and hands and was no longer able to hold his books to read.
"He didn't want to be in his bed, he was always in his wheelchair because he knew, if I have to stay in my bed, it's done."
Gilbert’s son brought him to gigs, museums and films as he continued to battle his illness, but the question of euthanasia was always in the background, Hedwig said.
'For who knows where the time goes?
Who knows where the time goes?
And I am not alone while my love is near me
I know it will be so until it's time to go'
Five years after his diagnosis and following a number of months in the Coda hospice, things became "unbearable and unliveble," according to Hedwig.
He decided that 16 September 2022, was to be his last day.
Assisted dying is part of the palliative system in Belgium. One in every 20 patients at the hospice ends their lives through euthanasia.
Under Belgian law, patients qualify if they have an incurable illness and experience constant, intolerable physical or mental suffering that cannot be alleviated.
They also must repeat an explicit request for assisted death.
Gilbert spent his final two weeks saying goodbye to friends and loved ones. When the time came, his family sat on the side of his bed with his palliative doctor on the other.
Gilbert removed his BiPAP mask and confirmed that he was certain he wanted to proceed.
"He was at peace, he couldn’t do it anymore," Hedwig recalled.
In his final words, Gilbert told those gathered by his side: "It was beautiful to live with all of you."
A sedative was administered through an intravenous line followed quickly by a lethal dose of drugs. He died within minutes.
A year on, Hedwig recalled the final moments as calm and serene, saying the deliberate manner of her husband’s death had helped with her bereavement.
But grief is never far away. Gilbert enjoyed gardening and loved sitting outside on warm mornings.
‘So come the storms of winter and then the birds in spring again
I have no fear of time
For who knows how my love grows?
And who knows where the time goes?’
Hedwig said she now thinks of him as she sits alone in the same spot.
She shook her head emphatically when asked if she had any regrets about the euthanasia process.
"I admired him for being able to do it. I respected that he made a decision like that."
Watch reporter Louise Byrne and producer/director Aaron Heffernan's report on assisted dying on Prime Time at 9.35pm on RTÉ One.
If you have been affected by issues raised in this piece, assistance can be found at rte.ie/helplines
