Article
Care
Change
6 min read

Are we forgetting how to care?

The profound act at the heart of nursing.

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

A nurse bends beside a bed and talks to a patient
Marie Curie.

Recently, at a nursing leadership programme in Oxford, attendees focused on the fundamentals of care.   Have we forgotten how to care? What can we re-learn from those who pioneered an ordinary yet profound act that affects millions? 

Anam Cara is an old Gaelic term for ‘soul friend’, a person with whom you can share your innermost self, your mind and your heart. It is a term that Tom Hill, former chief executive at Helen House Hospice in Oxford, used to describe the relationship between his staff and the thousands of children and their families who passed through their ‘big red door’ in its first twenty-five years. The hospice (or ‘loving respice’ as it became known) had been founded by Sister Frances Dominica in 1982.  

Other care in this country can also trace its religious roots. Between 1048 and 1070 in Jerusalem, the Order of St. John was founded for the purpose of helping pilgrims (“our Lords, The Sick”) who had become lost, weary, or beset by other difficulties while on their way to the Holy Land. Today, in the United Kingdom, the British Association of the Order has extended care to older people first in almshouses and later in care homes. A trustee for ten years was John Monckton, a man of ‘considerable talent, enormous integrity and deep religious conviction’; his tragic murder in 2004 led to the creation of the John Monckton Memorial Prize, which recognised and rightly celebrated commitment to care by care workers. 

Today, across the world, seen and unseen, nurses, carers and families continue to provide compassionate care. “Assisting individuals, sick or well, in the performance of those activities contributing to health or its recovery (or to peaceful death) that he would perform unaided if he had the necessary strength, will or knowledge” is the very essence of nursing, captured by ‘architect of nursing’, researcher and author Virginia Henderson in 1966. Meeting more than basic needs such as breathing, eating, drinking and eliminating bodily waste (which are of essential importance), Henderson recognised the role of the nurse in enabling humans to communicate with others, worship according to their faith, satisfy curiosity and sense accomplishment.  

In the desire for modernisation and professionalisation, have we lost sight of the core values and activities central to patient care?

An uncomfortable truth brought out in healthcare reports such as the Final Report of the Special Commission of Inquiry (The Garling Report) 2008, and the Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry (The Francis Report) 2013 is though that this type of nursing is too often done badly or even missed, leading to pressure injury, medication errors, hospital-acquired  infection, falls, unplanned readmission, critical incidents and mortality. According to nurse scientist and scholar Professor Debra Jackson, “missed care occurs much more frequently than we might think”. She cites a systematic review in which ‘care left undone’ on the last shift ranged from 75 per cent in England, to 93 per cent in Germany, with an overall estimate of 88 per cent across 12 European countries’. 

In one offensively-titled paper, “Shitty nursing - the new normal?” (in which the authors apologise for the title but not the questions raised), real-life pen portraits are drawn of patients lying for hours on hospital trolleys, immobile through infection or injury, ignored by staff. Whilst acknowledging contextual factors for poor care, such as a shortage of nurses and resources, the authors argue that circumstances cannot be the sole cause of missed nursing care. 

A report published by the University of Adelaide, School of Nursing, has called for nurses to ‘reclaim and redefine’ the fundamentals of care. It asks whether the cause of the problem (of missed nursing care) lies “deep in the psyche of the nursing profession itself?” “Has something happened to the way modern nursing views and values caring?” it continues. “Indeed, is nursing in danger of losing its claim to care? In the desire for modernisation and professionalisation, have we lost sight of the core values and activities central to patient care? Or is this a broader social pattern where individuals are less inclined to show kindness, compassion, and care for others even if it is a necessary requirement of the job?” 

Compassion, he emphasises, is more than empathy - and way "less fluffy" but much more measurable than kindness. 

Writing in the British Medical Journal, Professor of critical care medicine Peter Brindley and Consultant in intensive care Matt Morgan wonder whether doctors also “too often default to high-tech and low-touch” when patients are dying – a time “when community and connection matter most”. They powerfully begin with a mother’s comment: “Humans are gardens to tend – not machines to fix.” 

Professor Sir Al Aynsley-Green, the first National Clinical Director for Children in Government and former Children’s Commissioner for England, and past president of the British Medical Association, suggests that we as a society need a “momentum for compassion”. Struck by the extremes of compassion witnessed during his wife’s treatment in the last years of her life, Sir Al wants to see a cultural transformation in healthcare: for compassion to be a key operating principle in NHS and care settings, led by the Chief Nurse’s Office; for every organisation to promote the importance of compassion at the professional level; for the views of patients and families to be sought regularly; for much earlier and better focus on compassion in undergraduate and postgraduate teaching programmes for all staff; for compassion to be inspected against by the Care Quality Commission; and for a willingness to encourage staff at all levels to expose poor practice as well as celebrating excellent care.  

Compassion, he emphasises, is more than empathy - and way "less fluffy" but much more measurable than kindness. “It’s putting yourself into somebody else’s shoes – and doing something about it.” Recently appointed the UK’s first Visiting Professor in Compassionate Care at Northampton University, at the age of 80, Sir Al certainly is doing something about it. He has made it his new purpose in life to “embed compassion into every aspect of care”.  

Like Sir Al, Queen Elizabeth II, the UK’s longest serving monarch, espoused compassion, in word and deed. Living a life of compassionate service, the Queen made clear that her Christian faith was her guiding principle. She speaks of Jesus Christ as ‘an inspiration,’ a ‘role model’ and ‘an anchor’. “Many will have been inspired by Jesus’ simple but powerful teaching,” she said in her Christmas Broadcast, 2000. “Love God and love thy neighbour as thyself – in other words, treat others as you would like them to treat you. His great emphasis was to give spirituality a practical purpose.”    

When nurses do unto others as they would have done unto themselves, and act as role model to colleagues, not only do patient experiences of care and their outcomes improve – but so does job satisfaction for nurses: a critical factor in nurse recruitment and retention – the biggest workforce challenge faced by healthcare organisations. Across the UK, there are currently more than 40,000 nursing vacancies, and thousands of burnt-out nurses are leaving the profession early. Whether nurses decide to stay or go is driven in part by their daily experience at work. The late Kate Granger, Consultant in medicine for older people, inspired Compassionate Care Awards in her name, envisioning that such a legacy would drive up standards in care - and surely also help retain nurses, through restoring a sense of pride, achievement and fulfilment to the nursing workforce.  

Explainer
Belief
Books
Creed
Poetry
6 min read

Why a book? The words that change the world and me

Living by a literature that’s imbibed in countless cultures.

Belle is the staff writer at Seen & Unseen and co-host of its Re-enchanting podcast.

A man sits on a pier intently reading a book on his lap.
Ben White on Unsplash.

I have a belief system, a story that I live by, a lens through which I perceive the world. That doesn’t make me unusual or in any way different to you – we all have those, whether we’re aware of them or not. What may make me different to you is that mine are primarily explained to me through a book – or, more accurately, a library of sixty-six books – which we call the Bible. 

The story that I live by, that I breathe in and out, is bound. It sits within a cover, it moves through pages, it unfolds according to a contents page – it has genre, it has authors, it has punctuation.  

And I’ve never really found this odd. 

I think it’s because I’m what Charles Taylor would call a ‘storied creature’, my default is to make sense of the world on a largely imaginative level. I’m also quite romantic; poetically inclined, one could say. It sometimes feels as though words flow through my veins – if you were to cut me open, I may just bleed a puddle of my favourite Jane Austen monologues straight onto the floor. And so, my personality happens to lend itself spectacularly well to living my life according to a spiritual, sixty-six book wide, library. I’ve never really had to wrestle with the strangeness of such a thing, I’ve never sat down and stared the oddness of it in the eye, I’ve never even really asked myself (or God): why a book?  

I feel I should pause here, and offer a quick Rory Stewart-esque explainer, just so that we’re all on the same page.  

What I, and Christians through time and place, call the Bible is an anthology of sixty-six books, written by around forty authors, in three languages, over the span of 1,400-ish years. Within it, one can find poetry, narrative, apocalyptic literature, erotic literature, lists and figures, instructions and explanations. It is – year in and year out – the bestselling book in the world, with over 100 million copies sold or gifted each year. The New York Times Bestseller List actually omits it from its rundown, because otherwise it would always be so boringly there – sitting comfortably right at the top. No other book ever comes close. Words from this anthology of literature are graven into the floors and walls of the Houses of Parliament, they’re woven into almost every work of Shakespeare, they’re spray-painted clumsily onto billboards in the city I call home.  

And so, I guess, in one way, the answer to my question – why a book? – is all of that. The peculiar far-reaching resonance of the methodology speaks for itself. I think of Robin Williams’ impassioned monologue in Dead Poets Society… 

‘No matter what anybody tells you, words and ideas can change the world. We don't read and write poetry because it's cute. We read and write poetry because we are members of the human race. And the human race is filled with passion.’  

… And I get it. I understand why it was literature that was compiled, why language and words were the tool of choice. For better and for worse, biblical words and ideas have changed the world – they have been ‘the making of the western mind’, just ask Tom Holland. And so, pragmatically, one could argue that the Bible being a book (or a book of books) means that it has successfully imbedded itself in countless cultures, while also transcending them. It’s gone further, lasted longer, sunk deeper than any other form of communication could. Such is the power of words. 

But to stop my pondering there feels like I’d be stopping short. I’m not sure that a distant, pragmatic, academic answer is one that I feel satisfied with.  

So, this morning, I sat down with a cup of tea, a pen, my notebook, and a newfound curiosity - and I asked myself, and God, why a book?  

Why poetry?  

Why story?  

Why wordplay?  

Why have I – an educated, arguably disenchanted, most definitely left-brained, twenty-first century adult - been so willing to let these things mould my interior life? Why am I so moved by them? Moved to action, moved to tears, moved to rage. How can I read something that was written a millennia ago, in a part of the world I have never trod on, and somehow feel as if it is a love letter written exclusively to my own soul?  

I think that those are the real questions - the questions to which I have both a thousand and zero answers.  

And, like any work of literature, it does not give its meaning up easily – it requires me to sit with it, to excavate it, to gnaw on it like a dog with a bone. 

Zero answers, because I fundamentally think that it’s a spiritual thing, a God-designed thing, a thing that sits beyond any explanation I could piece together. The God that I believe exists wants me to know about him, wants me to learn and study, wants me to get glimpses of how thinks, how he works, he feels about me – and you. That’s a wild and wonderous thing. That reality leads me be stunned not only at the methodology, but the desire behind it, as St. Augustine wrote,  

‘the whole Bible does nothing but tell of God’s love’.  

And so, this literature, to me, is a source of truth, leaning into Iain McGilchrist’s inkling that,  

‘the fact that religions and mystical and spiritual traditions have always had to use language in a poetic way doesn’t mean that what they’re talking about is not real, it means it is ultimately real.’ 

The biblical literature uses words to take us to the edge of them.  

And, like any work of literature, it does not give its meaning up easily – it requires me to sit with it, to excavate it, to gnaw on it like a dog with a bone.  

Sometimes reading it feels like a balm on my heart, other times it feels like a wrestle in the dirt. But I guess that’s the beauty of it being a book, right? My worldview sits within a piece of literature that is adorned with my scribbles, tear stains, tea spills. A book that meets me every single day, ready to read me as I read it, giving my as many questions as it does answers. 

So, why a book? Because now that I think about it, it is odd. The powerful resonance of words for all cultures at all times, perhaps? Or the way that poetry was designed to make a bee line for the deepest parts of us? Or the fact that it is only through language that we can talk about the things that go beyond it?  

There are a thousand human-sized answers, if you really need them. I happen to enjoy the mystically-charged zero answers, myself.  

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