Article
Assisted dying
Care
Comment
Death & life
Suffering
5 min read

Why end of life agony is not a good reason to allow death on demand

Assisted dying and the unintended consequences of compassion.

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

A open hand hold a pill.
Towfiqu Barbhuiya on Unsplash.

Those advocating Assisted Dying really have only one strong argument on their side – the argument from compassion. People who have seen relatives dying in extreme pain and discomfort understandably want to avoid that scenario. Surely the best way is to allow assisted dying as an early way out for such people to avoid the agony that such a death involves?  

Now it’s a powerful argument. To be honest I can’t say what I would feel if I faced such a death, or if I had to watch a loved one go through such an ordeal. All the same, there are good reasons to hold back from legalising assisted dying even in the face of distress at the prospect of enduring or having to watch a painful and agonising death.  

In any legislation, you have to bear in mind unintended consequences. A law may benefit one particular group, but have knock-on effects for another group, or wider social implications that are profoundly harmful. Few laws benefit everyone, so lawmakers have to make difficult decisions balancing the rights and benefits of different groups of people. 

It feels odd to be citing percentages and numbers faced with something so elemental and personal and death and suffering, but it is estimated that around two per cent of us will die in extreme pain and discomfort. Add in the 'safeguards' this bill proposes (a person must be suffering from a terminal disease with fewer than six months to live, capable of making such a decision, with two doctors and a judge to approve it) and the number of people this directly affects becomes really quite small. Much as we all sympathise and feel the force of stories of agonising suffering - and of course, every individual matters - to put it bluntly, is it right to entertain the knock-on effects on other groups in society and to make such a fundamental shift in our moral landscape, for the sake of the small number of us who will face this dreadful prospect? Reading the personal stories of those who have endured extreme pain as they approached death, or those who have to watch over ones do so is heart-rending - yet are they enough on their own to sanction a change to the law? 

Much has been made of the subtle pressure put upon elderly or disabled people to end it all, to stop being a burden on others. I have argued elsewhere on Seen and Unseen that that numerous elderly people will feel a moral obligation to safeguard the family inheritance by choosing an early death rather than spend the family fortune on end of life care, or turning their kids into carers for their elderly parents. Individual choice for those who face end of life pain unintentionally  lands an unenviable and unfair choice on many more vulnerable people in our society. Giles Fraser describes the indirect pressure well: 

“You can say “think of the children” with the tiniest inflection of the voice, make the subtlest of reference to money worries. We communicate with each other, often most powerfully, through almost imperceptible gestures of body language and facial expression. No legal safeguard on earth can detect such subliminal messaging.” 

There is also plenty of testimony that suggests that even with constant pain, life is still worth living. Michelle Anna-Moffatt writes movingly  of her brush with assisted suicide and why she pulled back from it, despite living life in constant pain.  

Once we have blurred the line between a carer offering a drink to relieve thirst and effectively killing them, a moral line has been crossed that should make us shudder. 

Despite the safeguards mentioned above, the move towards death on the NHS is bound to lead to a slippery slope – extending the right to die to wider groups with lesser obvious needs. As I wrote in The Times recently, given the grounds on which the case for change is being made – the priority of individual choice – there are no logical grounds for denying the right to die of anyone who chooses that option, regardless of their reasons. If a teenager going through a bout of depression, or a homeless person who cannot see a way out of their situation chooses to end it all, and their choice is absolute, on what grounds could we stop them? Once we have based our ethics on this territory, the slippery slope is not just likely, it is inevitable.  

Then there is the radical shift to our moral landscape. A disabled campaigner argues that asking for someone to help her to die “is no different for me than asking my caregiver to help me on the toilet, or to give me a shower, or a drink, or to help me to eat.” Sorry - but it is different, and we know it. Once we have blurred the line between a carer offering a drink to relieve thirst and effectively killing them, a moral line has been crossed that should make us shudder.  

In Canada, many doctors refuse, or don’t have time to administer the fatal dose so companies have sprung up, offering ‘medical professionals’ to come round with the syringe to finish you off. In other words, companies make money out of killing people. It is the commodification of death. When we have got to that point, you know we have wandered from the path somewhere.  

You would have to be stony-hearted indeed not to feel the force of the argument to avoid pain-filled deaths. Yet is a change to benefit such people worth the radical shift of moral value, the knock-on effects on vulnerable people who will come under pressure to die before their time, the move towards death on demand?  

Surely there are better ways to approach this? Doctors can decide to cease treatment to enable a natural death to take its course, or increase painkillers that will may hasten death - that is humane and falls on the right side of the line of treatment as it is done primarily to relieve pain, not to kill. Christian faith does not argue that life is to be preserved at any cost – our belief in martyrdom gives the lie to that. More importantly, a renewed effort to invest in palliative care and improved anaesthetics will surely reduce such deaths in the longer term. These approaches are surely much wiser and less impactful on the large numbers of vulnerable people in our society than the drastic step of legalising killing on the NHS. 

Article
Comment
Digital
6 min read

Letter from a digital nomad

The real gift of the digital tools we now have access to is to make the world both bigger and smaller at the same time, writes Lianne Howard-Dace.

Lianne Howard-Dace is a writer and trainer, with a background in church and community fundraising.

Woman sitting in front of a computer
Photo by Chenspec on Pixabay.

The air in the carriage is still and stifling. I’m sat near the border of Romania and Bulgaria, waiting for the Poliția to return my passport, and I tot up that I’ve spent over 100 hours on trains in the last two months. But, despite my large suitcase and brightly coloured bum-bag, I’m not strictly on holiday. I am – for now at least – a digital nomad. 

Even before Covid-19 hit, the number of people combining work and travel in this way was growing. The increasing openness to remote working which the pandemic catalysed means this has only continued to explode.  

Some countries, like Portugal and Italy, are even trying to incentivise people to work there to aid their economies, or repopulate declining areas. 

Exactly what constitutes being a digital nomad is a little fluid, but essentially it is working remotely, in different places, for a prolonged period of time. You could certainly be a digital nomad moving around your home country, but there is a strong trend of people exploring places where their salary goes further. 

If you’re stuck renting and you work remotely anyway, why not add some adventure to the mix? 

It’s not hard to see why nearly half the people pursuing this lifestyle are in their 30s. Many of us have not been able to “settle down” in the ways we anticipated growing up. If you’re stuck renting and you work remotely anyway, why not add some adventure to the mix?  

Often, this means rocking up to a new city for a month or two, maybe as long as a year. Having bought a three-month interrail pass on a bit of a whim, I’ve taken a slightly different approach. Having already established myself in a new city a couple of years ago, I wasn’t looking to do that over again. But, working on the road is allowing me to scratch the wanderlust itch without eating into my savings. 

Making the most of my all-inclusive travel, I’m spending the week in one city and moving on to another for the weekend. I’ve been blessed to experience some of the best art, culture and food that Europe has to offer. Galleries in Dresden, a piano trio in Venice, and pierogies in Warsaw have been just a few of the highlights.  

I have also had to hold onto my job, of course, and getting used to balancing work and sightseeing was a steep learning curve for the first couple of weeks. My employer has not only allowed, but encouraged, me to make the most of their flexible working policy. This has made keeping the FOMO at bay easier, as I can always take a break to visit a gallery or museum and work into the evening if needed. Taking a late dinner is so much more continental anyway… 

The “digital” bit of being a digital nomad isn’t confined to remote working either. Having the timetable of every train route in Europe, a map of the world and a translator at my fingertips offers more than just convenience. As a woman travelling alone, I feel much safer knowing that the possibility of getting lost and not being able to communicate with anyone is reduced. 

Just as much as the breath-taking scenery and legendary landmarks, it’s been these little moments... which have really made this trip. 

Showing an Austrian man in the laundrette how the camera feature on Google Translate turned the washing machine instructions into English in front of our eyes was a really fun moment. In fact, just as much as the breath-taking scenery and legendary landmarks, it’s been these little moments (you might call them casual magic) which have really made this trip. Like noticing that I’m one of five women on the train to Oslo who are knitting or crocheting, or watching a man in Bratislava cycle across a park with a giant bundle of modelling balloons strapped to his back.  

Some people were surprised I was undertaking such a long trip alone, but it suits me. Compared to the 2021 lockdown - which happened to be my first experience of living alone - this is a doddle.  

I’ve also been helped by the fact that a few friends and family have taken my trip as an excuse for a break, so I’ll have had company for four of the thirteen weeks I’m away. As a bonus, I randomly bumped into a couple I know from London whilst walking over a bridge in Budapest and joined them for an impromptu beer. 

I’ve become very content dining alone. It’s nice to feel comfortable in your own skin like that, and it’s helped me get a lot more reading done as well! There have been other unexpected benefits of moving around so much. Oddly, for someone with hoarding tendencies, I take pride in being a light packer. I’ve really enjoyed the simplicity of living with a smaller amount of stuff and finally understand the power of “a place for everything and everything in its place”. 

In my “normal” life I am terrible for procrastinating with life admin and leaving things until they become stressful. On the road I can’t do that. I have to book the next train or place to stay. I have to tidy up because I need to be out of my room. I’ve learned that I thrive with this blend of structure and change, though I’m yet to figure out how on earth to translate that when I get back. 

I’ve also tried to keep a stricter morning routine than usual. I’ve started most days with a few pages of journaling and the daily reflection on the Pray As You Go app. It’s working well to have that consistent touchpoint, whether I’m waking up in a quirky studio apartment or on a busy sleeper train. 

I’ve visited a lot of cathedrals and churches on this trip, as these are amongst the significant landmarks in many European cities. Sometimes this is a purely touristic experience; if a church is teeming with people chatting and taking selfies I might take in the artistry of the building, but find it harder to connect on a spiritual level. But many times an atmosphere of reverence is maintained. There will be a quiet sense of shared wonder. I’ll find myself slipping into a pew, meditating on the imagery around me, having a little chat with God and generally enjoying being out of the hustle and bustle of the city for a short while.  

On Sundays, I’ve sought out an English-speaking church where possible. Maintaining some of the rhythms and rituals from my everyday life helps me to feel grounded. If I couldn’t listen to podcasts, or write, or crochet I suspect I would feel more disoriented whilst moving about so much. And if I didn’t go to church for the whole three months, I think I would feel out of sorts. Untethered, perhaps. In the twelve years or so I’ve been a Christian, I’ve grown used to that weekly gathering punctuating my week, giving me space to connect to God and others and allowing me time to reflect. 

Joining a service has also given me a different window into some of the cities I’ve visited. I loved hearing that the church in Prague were having their annual book sale, singing with a visiting choir in Berlin and learning about the grant the church in Bucharest have received to support refugees in their city.  

I am part of a worldwide movement... I can learn from others and find kinship wherever I am. 

The American student handing me the order of service, the Indian priest leading the service, the Australian retiree reading the bible passage for the day; they all remind me that I am part of a worldwide movement. That I can learn from others and find kinship wherever I am. And, when it hasn’t worked logistically to attend a local service, I’ve watched one on YouTube from my church back in Brighton. I’ve been able to both find a sense of connection in a new place and stay connected to my home community. Maybe that’s the real gift of the digital tools we now have access to; they make the world both bigger and smaller at the same time. 

Now, I’ve got my passport back and in six hours or so I will be in Sofia, something like city 20 of 27. In a few days I’ll take an overnight train to my furthest destination, Istanbul. I’ll be right on the precipice of where East meets West, having taken in the Alps, the Baltic Sea and the banks of the Danube along the way. Not a bad way to make a living.