Assisted dying ‘isn’t about disability, it’s about suffering and choice’


CONSULTATION with a group of largely disabled Islanders and those with long-term medical conditions has drawn mixed responses on whether assisted dying should be offered to those with incurable conditions giving rise to unbearable suffering.

A “significant majority” of the 38 Islanders who took part were in favour of assisted dying for those with terminal conditions, but only around half favoured its extension to those with incurable conditions.

Those in favour of what has become known as “route two” cited freedom of choice, highlighting unimaginable suffering that might extend for decades in some cases.

One person in favour said: “This isn’t about disability, it’s about suffering, and choice for people who feel that they can’t go on”.

Another said: “For these people, it’s potentially decades of unbearable suffering, not just six months.”

However, those opposed were concerned about the subjective nature of suffering in cases where a person was not nearing the end of their life, the perceived risk of coercion, the possible adverse impact on medical professionals and the fostering of negative attitudes to disability.

One person said: “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.”

The consultation exercise, following earlier engagement in 2022 and 2023 which also included those with long-term disabilities, was conducted following a recommendation of the Jersey Ethical Review.

Officers worked with organisations which support disabled Islanders and those with long-term conditions, generating a series of small discussion groups.

A further session was open to any disabled Islander or sufferer from a long-term condition or their family, friends or carers, and one-to-one interviews were also offered,although only one person responded.

The government report, published as an addendum to the assisted dying proposition, stresses that its purpose is not to respond to any of the themes raised, or to correct any inaccuracies or misconceptions that may have arisen in the responses.

“The discussions were qualitative in nature, hence the feedback is not quantitative (ie it does not set out of percentage of participants who held certain views).

“However, this report does, where relevant, provide broad indications of where the views expressed were held by a significant majority or minority of participants,” the report states.

It groups comments around a number of themes: autonomy of choice, dignity and peace of mind; assessing of suffering; concerns around pressure and coercion; impact on family and loved ones; impact on health care professionals and health services; perceptions of disability in Jersey; slippery slope – concerns over erosion of eligibility criteria and safeguards over time.

Meanwhile, the Assisted Dying Review Panel has lodged an amendment to the proposition due to be debated on 21 May seeking to give more clarity to the provision which allows individuals to refuse to participate in assisted dying.

As currently expressed, the Council of Ministers’ proposition says “no person should be under a legal duty to participate directly in the provision of assisted dying and any such person will have a right to refuse direct participation”.

However, the panel wants to remove the words “directly” and “direct”, introduced because of concerns that the service could be compromised by individuals pulling out who were crucial to but only incidentally involved in the assisted dying process.

The panel notes that the words are not included in similar legislation relating to terminations of pregnancy, and that the substantial majority in favour of assisted dying within the community makes it unlikely that there would be any practical problem.

It states: “ ‘Participation’ is an ordinary English word with a clear meaning, and the addition of the word “direct” only serves to confuse.”

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