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

Assisted dying and the unintended consequences of compassion.

Graham Tomlin

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

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.

Explainer

Care

Creed

30 June 2023

6 min read

Bed rotting and an old art of rest

In a culture where “exhaustion is seen as a status symbol,” bed-rotting is an emerging trend. Lianne Howard-Dace reflects on self-care and how to rest and refresh.

Lianne Howard-Dace

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

a sleeper pulls a blanket up over their head.

There’s a trend doing the rounds on TikTok which is attracting a fair amount of comment; the practice of taking (at least) a day in bed to recuperate when you’re running low on energy. Gen Z are - with characteristic directness - calling it ‘bed rotting’.

At first, this sounds like nothing new. People have been taking to their bed for centuries. Gen X might’ve called it vegging out, millennials would call it a duvet day.

From the discourse that’s sprung up about bed rotting though, it seems like some bigger questions are being explored around this trend. Firstly, Gen Z are reclaiming the need to stay in bed by branding it as a form of self-care. This picks up on some broader wellbeing trends online, where people are trying to decouple their sense of worth from their productivity. This train of thought picked up steam during the Covid-19 pandemic, and seems to continue to be something people are wrestling with.

As others are pointing out... is getting to the point of needing a day to rot in bed is really a good approach to self-care?

I rather like the visceral nature of the phrase ‘bed rotting’ and I’m sure that, whichever generational cohort we fall into, we can all relate to the occasional need to totally switch off to refresh and recalibrate. However, as others are pointing out, a second consideration is whether getting to the point of needing a day, to rot in bed, is really a good approach to self-care. Or would more preventative measures be the better way to care for yourself? Some commentators on TikTok have suggested that a combination of other gentle activities would actually be better at delivering the desired results than lounging in bed alone.

Dr Saundra Dalton Smith suggests in her book Sacred Rest that there are seven types of rest: physical, mental, spiritual, emotional, sensory, social and creative. Whilst bed rotting provides perhaps three or four of these types of rest, it may not provide the long-term refreshment sought if it doesn’t nurture the other parts of us as well.

Should we all just be expected to mindfulness our way out of a mental health crisis or yoga our way out of chronic pain?

While framing this extreme need for rest as self-care may give people permission to stop and reduce the stigma of doing nothing, it also puts the onus on the individual. I think the risk of self-care narratives in general is precisely in the focus they put on the self. While it can be healthy and empowering to take action to improve your wellbeing, it also draws attention away from the societal systems and structures that are contributing to everyone feeling so exhausted all the time. Should we all just be expected to mindfulness our way out of a mental health crisis or yoga our way out of chronic pain? Or should we be looking more widely at what is going on in the world?

This tension between taking responsibility for my own wellbeing but also reflecting on how I relate to the wider concepts of work, productivity and success is a very live, everyday issue for me. I have fibromyalgia, a chronic health condition characterised by fatigue and widespread muscular pain. Whilst conventional medicine gives some relief, I have to manage my energy levels very closely and intentionally pace myself to avoid my symptoms flaring up, though sometimes it is out of my control.

Unfortunately, if I were to let myself get to the point of desperately needing to bed rot it might take me a week or two to fully recover. I have to resist the urge to say yes to every invite and make sure I have a balance of work, rest and play in each week. This is helped by the privilege of being able to schedule my work around my own needs, it would certainly be much harder if I was tied to a very strict working pattern. In a way, it's like I have an early warning system for burnout, and I’ve become very attuned to fluctuations in my mood, energy or pain levels that might indicate the equilibrium is off.

As part of my energy management strategies, I have also found that the ancient practice of sabbath from the Judeo-Christian tradition has helped me to both take regular time to rest and to remind myself that I am a human being, not a human doing.

In Genesis, the opening poem of the Hebrew scriptures, we hear that after six days of hard work creating the universe, God rested on the seventh day. For thousands of years, Jews and Christians have attempted to learn from this and incorporate a day of rest into each week. The practice also exists in Islam.

Each Sunday I try to do as little as possible and particularly to disconnect from digital channels, because I know they often take more energy than they give me.

The way that this plays out in people’s lives ranges from very strict observance to more loosely held rules and rituals. However, you approach it, there is much to be learned from this ageless wisdom. I initially began practicing sabbath myself when I went freelance and realised how easily I could end up working seven days a week if I didn’t pay attention. This was six months or so before the first Covid-19 lockdown in the UK and I was extremely grateful to have established this habit in my life when that occurred.

For me, sabbath isn’t just ensuring I’m squeezing rest into each week but also creating rhythm. It punctuates my week and gives everything else breathing space. Each Sunday I try to do as little as possible and particularly to disconnect from digital channels, because I know they often take more energy than they give me.

In The Ruthless Elimination of Hurry, John Mark Comer helpfully suggests two simple criteria to decide whether something is permissible on the sabbath. Is it rest or worship? If it’s not one of those two things then it can wait. For me, worship usually means going to church, but for you that could be something else that helps you connect to something bigger than yourself and experience a sense of wonder. Perhaps immersing yourself in nature, or engaging with an awe-inspiring work of art.

Another helpful piece of advice about sabbath I heard from Annie F. Downs on Instagram:

“If you work with your hands, sabbath with your mind. If you work with your mind, sabbath with your hands.”

As someone who spends most of my working week creating content on a computer, this is a useful reminder not just to read and journal on my sabbath but to swim, crochet or cook as well.

Lastly, Jesus said “The sabbath was made for man, and not man for the sabbath”. This reminds me to do sabbath in a way that is life-giving for me, even if that looks different to what works for others. These guidelines have helped me establish a practice of sabbath which provides clarity and routine, whilst being expansive enough to allow me to give myself whichever type of rest I need at a given time. Occasionally I do just bed rot, but usually I do things that restore me and bring me joy, whether that’s taking a walk or cycle if I have the energy or simply taking my lunch to the beach.

Of course, I’m not always perfect in the way I sabbath. That’s why it’s called a practice. But I do notice I flag later in the week if I’ve skip it. So, even if I occasionally switch the day or bend one of my rules for a practical reason, I keep coming back to it.

If you don’t already, I really encourage you to try the routine of sabbath for yourself. Pick a day of the week that works for you, put some boundaries in place, try it for a few weeks and adjust accordingly. Treat it as an experiment, a gift to yourself and perhaps as a little way to opt out of the madness of modern life for a beat. And by all means, bed rot if you need to. As Brené Brown says: