Jersey residents clash over 'unbearable suffering' clause in proposed assisted dying law

Jersey residents with disabilities and long-term conditions have split views over the island's proposed assisted dying law.

It follows a new report from a series of government-run group meetings and interviews focused on discussing the 'Route 2 - unbearable suffering' clause.

While some say 'Route 2' brings peace of mind and choice, others believe it is subjective and the risk of coercion is far too high.

It was recommended that the Government gather disabled islanders' views on 'Route 2' specifically, following The Assisted Dying in Jersey Ethical Review Report published in November 2023.

The 'Route 2' category is for those who have been "diagnosed with an incurable physical condition that is giving rise to unbearable suffering that cannot be alleviated in a manner the person deems tolerable".

'Route 1' is for people with a terminal illness who have less than six months to live, or 12 months if they have a neurodegenerative condition.

People with disabilities and long-term health conditions, along with their friends, families and carers, were invited to share their opinions.

A majority were in favour of 'Route 1' with around a 50-50 split over whether they support 'Route 2'.

One participant said those unbearably suffering without a terminal illness are arguably more in need of assisted dying.

They added: "For these people, it's potentially decades of unbearable suffering, not just six months."

Another said: "This isn’t about disability, it's about suffering, and choice for people who feel that they can't go on."

However, others oppose 'Route 2', one said: "Route 1 is clear and straightforward, but Route 2 is a minefield."

The risk of coercion was deemed too great for some.

One participant stated: "Even if we only get it wrong for 1 or 2 people, that’s too many. Too much of a risk."

Another asked: "What happens if one of the doctors or someone outside or anyone would say, "Why don't you just go?". The option is there. They all want to see me dead."

Choice, peace of mind and equality were other issues raised by residents.

Some say 'Route 2' gives islanders the choice to end their suffering if they find it unbearable in the future.

One participant said: "I'm in my 80s and I'm fine, but who knows what is round the corner? I want to discuss this with my children, so they know in advance it’s something I may want in the future."

Others argued that death should not be in the hands of individuals to decide.

One resident stated: "It's playing God, it's not for us to choose when the right time is to die."

Some islanders also expressed that 'Route 2' is a matter of equality, stating that people with disabilities should have the same right to die if they are suffering unbearably as those who are terminally ill under 'Route 1'.

One participant said: "I want a choice for me and my body. Why should that be different if I have a disability?"

Another referenced the high cost of care: "If I'm in pain, incontinent and can't eat, I don't want to be sh*tting my pants day in, day out and it costs me £7,000 a month. Why shouldn't I be able to choose to go and leave that money to my children to enjoy?"

Pressure and coercion were raised as issues by several participants who were worried about how family, friends and even health professionals would sway someone's view.

One resident said: "We have regulation and oversight, there's a tiny minority of bad eggs like Shipman and Lucy [Letby], but they shouldn't dictate the decisions we make. Most professionals are there to help and support us."

Another said: "I've certainly experienced doctors with 'compassion fatigue', the professionals involved would need to be in the right space mentally, to be involved. And to care."

Another participant raised: "We're asking for someone else to kill somebody else. What support do they get?"

Another explained: "You see it all the time on the island, fallings out in families over money, this would come into play here."

Politicians are expected to debate the proposed assisted dying law on Tuesday 21 May.

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