Article
Comment
Death & life
4 min read

A covering of feathers for the terrors of the night

How to struggle with the burden of other people's suffering.
a pile of feathers.
Evie S. on Unsplash.

It’s one of the sad facts of life: that many of us at some point will see our parents get old and fade away. Sigh. It doesn’t matter how well prepared you are or how much you’ve thought about it before hand, the reality of a fragile mum or an exhausted dad can break your heart.  

I’ve talked to my parents about this for years here and there. We’ve done lots of joking about seeing them off with a pink pill in the sherry, or ‘it’ll be a pillow for you Pa, if you’re too annoying’ – type thing. But when they left after Sunday lunch a couple of weeks ago, I had to clutch my husband. He lost his own mother last year… we’re still fluttering around the gap she’s left in our family. And now there’s my beloved olds too, looking diminished and moth eaten and moving at crepuscular speed. Ask Dad how he is these days, and he says ‘Old, dear’, and won’t elaborate further. 

I can cope with this when it’s in short bursts. Visiting them for lunch or taking them out on a trip is OK and manageable, and there is still joy in family occasions. Mum’s birthday was full of love, even though she took all afternoon to open her cards and became hopelessly confused about who’d given her what.  

But staying with them… that’s hard. Seeing the dust thick over the spare room; worrying about just how long that bowl of leftovers has been in the fridge. I whip about as unobtrusively as I can, scrubbing the bottom of the washing up bowl or putting their jerseys in a wash. I don’t want to be annoying – they won’t accept help and I’m not going to push – but it makes me sad. In particular I hate that my mum is in constant pain from crumbling bones, and that dementia has stolen her mind. Also, that as a consequence, Dad is irritable with her; he who has always adored her so much. 

I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain. 

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Since childhood, I have struggled with the burden of other people’s suffering. I sometimes wonder if I’m exaggerating when I think about how much I mind, but I don’t think I am. I can only manage if I’m really ready for it. With my counselling clients that takes the form of very firm boundaries, regular supervision, colleagues to talk to etc… but with family it’s much harder. It’s just your own naked, soft-bodied self-shrinking from all the nettles and thorns – like a hermit crab without a shell.  

So when I went down to Mum and Dad’s this time, I felt the need to prepare. ‘Put on the armour of light,’ St Paul says, which sounds just the thing. I hardly slept last time, tossing and wriggling through small-hour horrors with my neck hurting and a feeling of tears not being far away. What to arm myself with though? 

The answer came in the form of an ancient poem - Psalm 91. I was listening to a Premier Radio presenter who is a pastor – a big, tattooed fellow with rings in his nose and lip – and he said it was his main defence when his wife was diagnosed with cancer. So, I looked it up, and I loved it. It was all about how the Lord will cover you with his wings and keep you safe from the terrors that visit in the night and the pestilence that stalks by day, or words to that effect.  

Malcolm Guite (a poet and priest whose writing I love) says you have to treat Psalm 91 with care: it was the one Satan tempted Christ within the wilderness, challenging him to throw himself from the temple roof and God would send his angels to catch him (as it says in the psalm). It’s not to be taken literally, this psalm: you can’t deliberately put yourself in harm’s way and expect to be immune because you’re a Christian, like some of the vehement anti-vaxxers around the world who think faith alone will protect them from lethal diseases. But the message is that if you put your trust in God, he won’t let you be damaged in any important or lasting way by the evils of the world. 

I memorised as much of it as I could. And then when I woke in the night – inevitably – with the dread hovering over me, I kept thinking, ‘The Lord will cover thee with his feathers’. I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain and muddliness and Dad’s frustration and my own fear. They were like malevolent ghosts drifting through the dark, menacing and cruel. But Mum and Dad and I, our actual selves, were curled up safely, warm and hidden with the great wings over us.  

And eventually, I was able to go back to sleep. 

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.