Article
Assisted dying
Care
Comment
Easter
5 min read

I know who will be most affected by legalising assisted dying

Contemplating lent revives hard memories and raises fresh fears.

Ryan is an ordained Priest in the Church of England, currently serving in south London. 

A close up of a forehead bearing an ash cross marked on it.
Ahna Ziegler on Unsplash.

“What’s that - a face tattoo?” 

These were the words of one person as I walked past them on the streets on a recent Wednesday, with the ashes of last year’s burnt palm-branches placed across my forehead in the shape of the cross.  

The cross has been a symbol of hope for over two millennia; that even in the most painful of circumstances, darkness does not have the final say, including in death.  

As a society, we don’t really talk about death that much. Margot Robbie’s Barbie was the quintessential party-pooper when she pondered: 

 “do you guys ever think about dying?”. 

It’s no fun to dwell on death and dying, and for many of us, we put it off as long as we can. That all changed last year with the introduction of the assisted dying bill into the Houses of Parliament. Our national attention was, for a rare moment, captured by death.  

As a parish priest, I’ve seen the finality of burying someone into the ground. I’ve seen the sadness in the eyes of those trying to grieve. 

The words of Ash Wednesday, which remind us that we are ‘but dust, and to dust we shall return’ are echoed in the famous words that the priest recites in those last moments of burial, ‘ashes to ashes, dust to dust’. In that moment, amongst the bereaved, there is no escaping the inevitability of death. It is the ultimate statistic, 1 in 1 die. 

Whilst death is of course universal and will affect us all, the impact of this assisted dying bill could have consequences for some of the most vulnerable in society.  

As I reflect on my time as a Priest in East London, this is not abstract theory, but something I lived with each day. I served amongst a hugely diverse, vibrant, community in one of the poorest parts of the city. As I try to picture some the people I’ve walked alongside, I know it is these lives that will be most affected.  

One of the reasons I have concerns about the bill is the prospect of these people being coerced into ending their own lives prematurely, by a world that has already told them their lives are of little value. There are already huge disparities in access to the current provision of palliative care at the end of life, particularly amongst people of colour, the disabled and the poor.  

Of the 500,000 people who die each year, 100,000 do not access the care they need. This number is skewed towards ethnic minorities and those who come from poorer backgrounds.  

There is much confusion and misinformation about what end-of-life care even is. Research conducted by Marie Curie shows that 1 in 5 people from an ethnic minority background believe Palliative Care is actually Euthanasia.  

We only need to look at what has happened around the world when the ‘right to die’ becomes a duty to die. Even with the best of intentions, other jurisdictions show us that safeguards rapidly deteriorate and those who are already vulnerable become even more so.  

I worry that the way in which this bill is being handled - rushed through, little time being given to properly chew over the profound consequences it may have - reflects the wider way we view death. 

By trying to provide a ‘choice’ for a certain group of people, the consequence will be taking away real choice from those who already have little. 

Yet we know that for those who do access it, palliative care can be hugely effective in improving their quality of life, and for some, they can even outlive their prognosis. During Ash Wednesday’s service, I met an elderly gentleman who was diagnosed with stage four pancreatic cancer in 2019. He was told he had five months to live. He described every day of his six-year survival since as a ‘miracle’, his eyes filled with evident joy.  

Such a blessing stands in stark contrast to the lonely final days of my 96-year-old great grandmother. She was suddenly taken ill during the Covid-19 pandemic and was frantically rushed to a hospital. Amidst the chaos, exasperated by the restrictions against seeing family that were in place at the time, I distinctly remember confused conversations about placing her in a care home for her final days. It was clear she needed a lot of specialist attention, more than our family could provide ourselves.  As she was discharged to stay with our aunt, she never did reach that care home, as she died at home. She was buried in our local cemetery, with our family watching on Zoom.  

My final memory of my great-grandmother will be the FaceTime call we shared when she was taken to hospital, with the poor data connection and shaky picture. I am so grateful for the few family members who were able to be by her side when she died, but I’ve often wondered whether she fully received the care she actually needed during those final days, in the way she needed it.  

What my great-grandmother didn’t have a lot of at the end of her life was time.  

That’s also true for this bill. Concerns have been raised that only five hours of debate were given to this Bill in the chamber, comparatively short for a change in the law of this magnitude.  

I worry that the way in which this bill is being handled- rushed through, little time being given to properly chew over the profound consequences it may have- reflects the wider way we view death.  

Do we view death - and indeed the dying- as something to be shoved to one side, not spoken about in the hopes we can avoid its impact? Or do we view death as an important moment to review who and what matters most in life?  

Perhaps for some, the fact that Christians devote a period of 40 days to dwell on death may be one of the mysteries of faith. However, perhaps it’s not such a bad idea after all.  Death may bring with it fear, grief and pain and so we tend to avoid it. But do we risk missing out on much more? As we head into Easter, the cross still serves as a powerful reminder that, especially in death, Hope can be found, that Good has triumphed over evil, and Light shines even in the darkest of places.  

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Article
Ageing
Care
Change
5 min read

Delicate, fragile, frail: how we cope when we age

The insights and analogies that help.

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

An old woman wearing a shawl looks pensive.
Valentin Balan on Unsplash.

“Who could dissect a portion of the human frame without marvelling at its delicacy, and trembling at its frailty?” mused preacher Charles Spurgeon in the nineteenth century. Songwriters, artists, authors and surgeons alike are fascinated by frailty. Within, beneath and beyond that fragile frame though, could there be a deeper reality, waiting to arise – and endure? 

Fragile Lives is the ‘heart-stopping memoir’, operation by operation, of heart surgeon Professor Stephen Westaby. “The finest of margins,” he writes, “separates life from death, triumph from defeat, hope from despair – a few more dead muscle cells, a fraction more lactic acid in the blood, a little extra swelling of the brain. Grim Reaper perches on every surgeon’s shoulder.” 

To what shall we compare this fragility of frame? - which means we can shatter sudden as glass, our “breath becoming air” in the blink of an eye? (Paul Kalanithi, a young neurosurgeon, called his memoir When Breath Becomes Air as he fought his own battle with cancer). A snowflake? A spider’s web? A butterfly wing? In Dutch still life paintings, the transience of life is variously depicted in dry, fallen withering petals, rotting fruit, and a glass vessel, like a vase. At some funeral services, it is said that we are made from dust, and to dust we shall return. Elsewhere in the Bible, we are likened to a mist that appears for a little while and then vanishes, or to a flower that withers away, a fleeting shadow that does not endure. Our days are a mere handbreadth, our life but a breath, writes one Bible songwriter. 

Medics talk more commonly of frailty than fragility – and it’s not just a byword for old age. According to the British Geriatrics Society, not all old people live with frailty; not all people living with frailty are old, though age is a recognised risk factor, with nearly 40 per cent of adults aged 85-90 being frail. Described as a vulnerability to external stressors which can result in sudden marked deterioration in function, frailty might feature as a combination of falls, immobility, delirium, incontinence, and increased side effects of medications, suggesting the body is struggling to cope. “A minor infection or minor surgery results in a striking and disproportionate change in health state – from independent to dependent, mobile to immobile, or lucid to delirious,” writes a team of doctors in The Lancet

Frailty is a sign of advanced biological rather than chronological age. Often, it’s an unwelcome term, with consultant physician Patricia Cantley noting that, “from a patient or relative’s point of view, the word frailty seems to be at best somewhat vague and at worst, derogatory and demotivating”. She prefers to talk in terms of paper boats. Picturing young healthy patients as little tugboats of wood and steel, built to withstand storms, she likens the frail patient’s clinical situation to a paper boat, which can sail the sunny seas, but is soon buffeted and may be brought down by ‘medical winds’. 

Encompassing also psychological and cognitive symptoms alongside the physical, frailty is not a fixed state, nor is decline in mind and body inevitable once frailty begins. Seen increasingly as a dynamic spectrum, reversal of frailty is sometimes possible; the paper boat being, to a degree, storm proofed and made to chart a different course. According to Dr John Travers, professor of public health at Trinity College, Dublin, twenty minutes of daily exercise can reverse physical frailty and build resilience in over 65-year-olds, while others suggest that movement based mind-body therapies such as tai-chi and yoga can strengthen both mind and body. Could there also be something of a spiritual strengthening in the frail patient? As the body decays and declines, could the soul, the spiritual self, enlarge, emerge and ultimately endure as life ebbs away? This was certainly the sentiment of Paul, one of the early church leaders, in the Bible, who, after much suffering, wrote: “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day…we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 

Her late Majesty Queen Elizabeth II was seen on our television screens to diminish physically in her last days, her purple hands, tiny frame and walking cane causing concern among viewers. She was, at her funeral, described simply as “our sister Elizabeth”, her small coffin dwarfed by pageantry and a crowd of 2,000 including presidents and kings. And yet, the former Moderator of the Church of Scotland has revealed that she talked much of her Christian faith in her dying days, while her funeral was an explosion of scripture, hymns and sermons that expressed the strength of her personal faith. “It was her way of eloquently, beautifully and powerfully speaking to me and 4.1 billion other people of her Christian faith,” writes Pastor Skip Heitzig. For me, the funeral brought to mind the tides (continuing with the theme of the sea). As the tide recedes, the waters move away from the shore, in what is known as an ebb current. As the tide rises, water moves toward the shore in a flood current. As our Queen’s life ebbed away physically, her spiritual self arose, roaring like a mighty flood. Ocean motion, in currents, waves and tides, is driven by the sun, moon and the planets. Our late Queen also looked upwards, to her God, for spiritual succour that would turn life’s ebb to a soul-flood.  

Hymnwriter Timothy Dudley-Smith sought a similar exchange, from the physical to the spiritual, the mortal to the immortal, in yet more words about boats, in his hymn “My boat so small”, based on the Breton Fisherman’s Prayer. 

“Adrift when strength and courage fail, O Spirit, breathe to fill my sail” 

And, happily, he trusts a safe voyage, finishing with - “My voyage done, all trouble past, to haven bring my soul at last.” 

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