A tearful politician shared details of the daily pain resulting from her medical conditions during a debate about extending the assisted-dying legislation recently passed by the States Assembly.
Speaking in response to a proposition to widen the scope of the law to allow those with incurable, but not terminal, physical conditions causing unbearable suffering to have the right to choose to end their lives, Deputy Carina Alves spoke about her personal experience.
The St Helier Central representative fought back tears as she described her struggle to identify her condition before receiving a diagnosis of endometriosis and an auto-immune disease.
While pain relief was available, Deputy Alves said this came with side-effects that left her unable to work and that sometimes “the strongest pain relief doesn’t touch the sides”.
She added: “I’m lucky, because I have more bearable days than unbearable days – I support this, because what is the alternative for somebody who doesn’t want to experience that anymore?
“Can they try and do it themselves? What happens if that potentially fails and causes more suffering? I want that choice, and I believe that others should have that choice too.”
Introducing a right to choose an assisted death in cases of unbearable suffering had been one of the options discussed during the process to bring in the new law, but this route was rejected after a previous debate, with Members choosing to restrict the choice to those expected to die within six months, or 12 months for those with neuro-degenerative conditions such as Parkinson’s or motor neurone disease.
The mover of the proposition, Deputy Geoff Southern, said that as well as believing it was the right thing to extend islanders’ right to choose, he believed the more narrow law passed by the States Assembly last month could leave Jersey open to legal challenges under the European Convention on Human Rights.
But others were critical of Deputy Southern’s timing in lodging the proposition for debate just a fortnight after the landmark vote, contributing to fears of a “slippery slope” process by which the law would be extended.
Health Minister Tom Binet said that he had been personally disappointed, as a supporter of assisted dying, that the unbearable suffering option had been rejected in a previous vote in May 2024, but said he felt it was important to respect the democratic decision taken in order to avoid undermining public confidence.
“At the very least, we need to allow time for the new law to be introduced and to show that the safeguards work,” he said. “We have committed to review the law after three years, and that would be an appropriate time to consider this.”
Constable David Johnson said that there was a risk of jeopardising the respect for the decision to bring in assisted dying under the more narrow definition.
While the May 2024 debate saw 19 Members vote in favour of including an unbearable suffering option, and 27 voting against the move, Deputy Southern’s recent proposition suffered a heavier defeat – 34 votes to eight – following a discussion that lasted just under an hour.