The case for an assisted dying law in Jersey
First published: Jersey Evening Post March 23rd 2024
Who would want anyone to suffer? I want people to live good lives and have good deaths. Perhaps I have thought of death more than some as my mother was diagnosed with cancer when I was in my early teens. I lost both my parents in the 1990s. We nursed my mother at home until we could not cope. In her last two weeks she was able to move to the Hospice where she had a peaceful death. My father died, after a short illness, in the care of our General Hospital. Sadly, for some people a peaceful death with dignity is not possible. I recall a woman on the same ward as my mother at Westminster Hospital; she had a huge hole in her right thigh; a malignant fungating wound. The putrid smell of decomposing flesh engulfed the ward when her dressing was changed. The poor woman was so embarrassed and would spray perfume constantly and ask if we could smell her leg. Of course, to maintain her dignity, we said “No.”
My campaigning on this matter through the Jersey Dignity in Dying Action Group was brought into focus by the death of my dear friend Alain du Chemin from glioblastoma. Before he died, he asked me while it would be too late for him, that I continue campaigning to help others.
Recently somebody asked me why I hadn’t started campaigning earlier. It was only through reading documents such as “The inescapable truth” published by the Campaign for Dignity in Dying that I discovered that palliative care cannot relieve all suffering and that I had a somewhat rose-tinted misconception of the extent of palliative care to relieve suffering. I would also recommend “Last rights: The case for assisted dying” by Sarah Wootton and Lloyd Riley. It’s a distressing read about how people have suffered unimaginably awful deaths, even with the best care, and I found myself reduced to a sobbing wreck but it’s important to face the truth.
The reality is that most people will die in hospital, the hospice or at home. Sadly, there will always be a few whose wish to die with dignity cannot be met and suffer unbearably. Suffering is not just physical pain. Pain is a complex issue. Pioneers of the hospice care movement conceptualised “total pain” as the interrelationship of physical pain, spiritual pain, psychological pain, and social pain — explaining that towards the end-of-life suffering can be caused by one or any combination.
This is why I am campaigning for a law on assisted dying in Jersey. While we can learn from other jurisdictions, each community must do what is right for them and craft a process that is appropriate to their community’s needs. In our favour, and of particular significance to our unique situation is that we have a functioning health service and an excellent Hospice which would enable assisted dying to sit appropriately within a broader health framework.
“Poll couldn’t be clearer” majority support assisted dying law change in Jersey | ITV News Channel
Jersey is an independent jurisdiction with a primary legislature so it is right that we should make our own decision on this, having regard to our own circumstances. But it is also wise to look outward and gather evidence from elsewhere. The serendipitously timed Commons inquiry into assisted dying by the UK parliament’s Health and Social Care Committee made a hugely apposite point — that there will always be a few for whom palliative care cannot relieve all suffering. I would challenge those who are against assisted dying — what do you think these people should do? Starve and dehydrate themselves? Take matters into their own hands? Suffer? Be sedated? I know that palliative sedation is leant on heavily by those opposed to assisted dying but this is not without its own ethical considerations.
The challenge for all of us is that until it happens to you or your family member, this discussion is somewhat theoretical.
Focusing on the autonomy and dignity of the individual, should they be denied the opportunity of a peaceful death at a time of their choosing? Should they be forced to endure symptoms until they are so bad that they must be sedated?
I, and my fellow campaigners expect challenge, and it is right that a proposal of this magnitude should be robustly challenged and that all concerns should be listened to. Aside from faith-based objections, most of the challenges that I have received fall into three camps; those who have misunderstood the proposals, those rightly concerned for coercion of the vulnerable and those who think that it is unnecessary; believing that all suffering can be alleviated albeit in some cases by sedation.
I respect hugely people of faith who are opposed to assisted dying for themselves. I cannot image the fortitude of someone of faith who eschews assisted dying while facing indescribable suffering.
However, we should also remember that there are people of faith who support assisted dying too such as the former Archbishop of Canterbury, Lord Carey, who described the role of a doctor assisting dying as an “act of great generosity, kindness and human love”, looking to end their suffering and release them from pain. More recently, the former Moderator of the church of Scotland, the Very Reverend Sandy McDonald, (Father of the actor David Tennant) has shown his support for “assistance towards a peaceful death” for terminally ill people.
What I would ask those who are against the proposal is that their “no” does not prevent my “yes”.
I would also say that the proposition for debate is the culmination of a robust process. In November 2021, the States Assembly voted by a landslide (36 to 10) in favour of the principle of legalising assisted dying. This vote followed on from a citizens’ jury which overwhelmingly recommended legislation. The proposal was then consulted on in early 2022 culminating in two options with different eligibility criteria. Most recently, an ethics review favoured route one, namely that a person has been diagnosed with a terminal physical medical condition, has decision making capacity, has a voluntary, settled, and informed wish for an assisted death, be at least 18 years of age and has been ordinarily resident in Jersey for at least 12 months.
To date, I have focused my campaigning on route one. However, I was recently challenged by a supporter of route two, which is for people with unbearable suffering from an incurable physical condition. I was asked how I could in all conscience allow anyone to suffer. My focus is on campaigning for route one. The Assisted Dying in Jersey ethical review report describes route two as “fundamentally different” as it is assisting people to die who are not dying, so it is “not as readily compatible with existing medical practise and decision-making processes.” At present I have concerns around safeguarding risks, particularly in cases of coercion. I do not believe that we have the medical support for this route, and I am unclear as to the quantum of need and the subsequent costs of the tribunal. I will leave to others to campaign for route two.
I would also add that option one is similar to Oregon’s tried and tested 25-year-old law and is comparable to legislation adopted in all Australian States, New Zealand, and parts of the US. It contains safeguards, strict eligibility criteria and independent medical oversight. It is worth noting that Oregon’s Hospice and Palliative Care Association were opposed prior to their law coming into force, but after its implementation, they dropped their opposition and acknowledged their fears were misplaced.
I hope that a law will be passed. I remember feeling like I could jump for joy when the in-principle debate was overwhelmingly passed. If this law is passed, I imagine I will feel a great relief knowing that whatever happens, I and those I love, can have a good death. I imagine that for most of the island nothing much will change but for the few who will have need of this service it could mean the world.
