Article
Assisted dying
Comment
Death & life
Politics
5 min read

The careless conflation of independence, autonomy and dignity

As Jersey begins to legalise assisted dying, there’s keyword confusion.
A elderly women in a care home stands and places her hands on the shoulders of a seated woman.
Eberhard Grossgasteiger on Unsplash.

Reviewing Canada’s legislation on assisted dying, one article raises the concern: “Does it make dying with dignity easier than living with dignity?” This insightful question cuts to the centre of the debate: dignity. Or more particularly, the unwitting conflation of dignity with independence, and of independence with autonomy.  

As Jersey becomes the first place in the British Isles to begin the process of legalising assisted dying, I feel that we should listen carefully as to how and where these terms are being used, both in the formal debate, and in the commentary that surrounds it. The States Assembly in Jersey voted to allow the development of assisted dying legislation for those with six months to live (or twelve months if their condition is neurodegenerative). A second vote to make assisted dying available more broadly to those who experience conditions that entail “unbearable suffering” was defeated by a narrower margin. Reading the flurry of press releases that followed the vote, these keywords, autonomy, independence, and dignity, are everywhere. But are we really thinking about what these words communicate?  

People in positions of wealth and power have more independence and autonomy, more choices and freedoms, but it is we who ascribe dignity to those in that position.

The word dignity comes from the Latin word dignus, meaning ‘worthy’, and this is still the primary definition given to the English word dignity today. The OED dictionary has it as “the quality of being worthy or honourable”, immediately followed by reference to “honourable or high estate”. If this is so, then dignity is not something that can be bought, nor assumed – it is a status conferred upon someone by the esteem in which other people hold them. The haughtiest person in the world can still be esteemed undignified, as can the richest. Moreover, the opposite is also true: we are never prevented from conferring dignity upon, and esteeming the worthiness of, those who live the humblest of lives.   

And yet, if we are honest with ourselves – do many of us not quietly associate the idea of becoming rich and powerful with becoming dignified? Do we not tend to assume the worthiness of those in high office – at least until we meet them and realise pretty quickly that they all put their trousers on one leg at a time, the same as the rest of us. This association happens because we have such a tendency to conflate dignity with independence (the ability to live without assistance from others) and autonomy (the ability to make one’s own decisions, and not have those decisions limited or interfered with). People in positions of wealth and power have more independence and autonomy, more choices and freedoms, but it is we who ascribe dignity to those in that position. It is society who sees the autonomy of those in high status, and esteems it as dignified.    

Does this not unwittingly suggest that choosing to live in a state of extreme dependence on palliative care is, by implication, undignified? 

Repeatedly ancient wisdom, in the Bible, warns us not to assume that dignity comes with the freedom of wealth or power. All the great ‘heroes’ of that book suffer their indignities. Fresh from the success of his Ark project, Noah gets drunk and exposes himself. Elated from a victory against an enemy, King David dances half-naked through the streets. These are just two examples of the catalogue of embarrassments and mishaps that beset nearly all the kings and leaders whose stories are told as part of the Christian story. One after another, they stumble and struggle with life and leadership. The apostle Paul explains that this is because God uses the foolish things of this world to shame human pride, “for even the foolishness of God is still wiser than human wisdom.” Therefore, Paul argues, God chooses to speak to us through the weak and the lowly things and people of this world. Never was this demonstrated so clearly as when Jesus was born in a draughty stable, lived a life of poverty, and died a criminal’s death on a cross.

But what has all this to do with the debate over assisted dying? Well, I am struck by how often the idea of losing one’s independence (through disabling or terminal illness) is conflated with losing one’s dignity, and so dying through personal choice (autonomy) is presented as regaining it. One campaign group that speaks to this debate even calls itself ‘Dignity in Dying’ – but does this not unwittingly suggest that choosing to live in a state of extreme dependence on palliative care is, by implication, undignified?  

Independence is not possible for everybody, or not possible to the same degree. And dignity? Well, dignity is possible for anyone. 

The Dean of Jersey, the Very Reverend Mike Keirle, has spoken of his concern that the change in legislation will make vulnerable people feel pressured to end their lives. Examples from Canada, where physician assisted dying is already available, show that his concern is not unfounded. In 2022, Canadian veteran and Paralympian Christine Gauthier phoned her caseworker to chase up the over-due installation of her new wheelchair ramp. She then describes how she was horrified to find herself being advised to consider assisted dying instead.  

"It is remotely just what they're doing,” says Gauthier, “exhausting us to the point of no return. […] I was like, 'Are you serious?' Like that easy, you're going to be helping me to die but you won't help me to live?"

Gauthier is not alone – she spoke out when she learned that four other Canadian veterans had reported similar experiences. In these unhappy moments, one can see how dangerous the assumption can be – the assumption that no one would want to live a life of needing help. Here are disabled people who do want to live, and this assumption, this careless conflation of independence, autonomy, and dignity, leaves them fighting for their right to do so. Why should anyone have to fight or even speak for their right not to commit suicide? It is little wonder that disabled actress, Liz Carr, describes assisted dying legislation as “terrifying” for disabled people. 

I respect that there are terminally ill people, and those who love them, who speak from a desire to end their suffering; it is clear that people on all sides of the debate need to have this difficult and emotionally charged conversation. But whatever the eventual outcome in terms of legislation, we must be careful that it is not based on careless assumptions, or on the conflation of one thing with an entirely different other. Independence is not possible for everybody, or not possible to the same degree. And dignity? Well, dignity is possible for anyone – it is a state that can be conferred whenever, and upon whomever society chooses to confer it. Autonomy is the matter in question – we are talking about autonomy in dying. And whatever happens, we should by no means legislate in a way that leaves disabled people esteemed unworthy, left open to the indignity of fighting for their right to live. 

Article
Care
Comment
Mental Health
4 min read

Suicide prevention cannot be done in isolation

Community response is needed, not just remote call-handling

Rachael is an author and theology of mental health specialist. 

 

 

Three posters with suicide prevention messages.
Samaritans adverts.

Suicide is a tragedy that leaves devastation in its wake for individuals, families and communities - but it remains shrouded in stigma. Whilst those who die by suicide are grieved and mourned amongst their communities, those who experience suicidal thoughts or who survive suicide attempts are often dismissed as ‘attention-seeking’ or ‘dramatic’.  

The truth is, our response as a society to suicide is one which often ignores those who are most vulnerable until it is too late. According to the UK Office for National Statistics, the number of people dying by suicide has risen steadily since 2021, and whilst some of this can be attributed to the way in which deaths are recorded, it also represents a real and urgent need to change the narrative around suicide and the suicidal.  

As the need has risen, we have also seen that services seeking to support those struggling with rising costs and rising demand.  

Just 64 per cent of urgent cases and 72 per cent of routine cases were receiving treatment within the recommended time frames and the proportion of NHS funding being allocated to mental health falling between 2018 and 2023 highlights that the parity of esteem for mental health promised back in 2010 seems to grow further away. 

Against this backdrop, for over seventy years, the Samaritans have been synonymous with suicide prevention, working where the health service has struggled to be. It’s sometimes been referred to as the fourth emergency service and has been providing spaces, mainly staffed by volunteers, in person, on the phone and online for people to express their despair in confidence.  

And yet earlier this year, it was announced that over the next decade, at least 100 of its branches would be closing, moving to larger regional working and piloting remote call-handling.  

Whilst this might be an understandable move considering the economic landscape for the Samaritans, it risks not only a backlash from the volunteers upon which Samaritans relies but also reducing the community support that locally resourced hubs provide.  

Suicide prevention cannot be done in isolation; it has to be done in and with community.  

Even the most well-trained and seasoned volunteer might find particular calls distressing, and the idea that they would have to face these remotely, without other volunteers to support them, is concerning.  

I think this needs to be a wake-up call, not just for the sector - but society as a whole. Because when it comes to suicide, we need to work together to see an end to the stigma and a change in the way people are supported. 

Suicide prevention cannot be left up to charities, we all have a role to play. 

It matters how we engage with one another, because suicide can affect anyone. There are undoubtedly groups within society who are at a higher risk (for example, young people and men in their middle age).  

Still, nobody is immune to hopelessness, and even the smallest acts of kindness and care can help to prevent suicide.  

In the Bible story of the Good Samaritan, from which Samaritans take its name, Jesus tell the story of a man brutally robbed and left for dead on the roadside. A priest and a Levite avoid the man and the help he so clearly needs, but a Samaritan (thought of as an enemy to Jesus’ audience) was the one to not only care for his physical wounds, but also pay for him to recuperate at an inn.  

We need to have our eyes open to the suffering around us, but also a willingness to help. It probably won’t be by giving someone a lift on a donkey as it is in the story(!) but it will almost certainly involve asking the people we meet how they are and not only waiting for the answer, but following it up to enable people to share.  

It might require us to challenge the language used around suicide; moving from the stigmatising “committing suicide” with its roots in the criminalisation of suicide which was present before 1962 to “died by suicide”, and shifting from terms like “failed suicide attempt” to “survived suicide attempt” so that those who must rebuild their lives after an attempt are met with compassion and not condemnation.  

Above all, we need to be able to see beyond labels such as “attention seeking” or “treatment resistant” to reach the person whose hope has run dry, and allow our hope to be borrowed by those most in need, both through our language and our actions.

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief