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.  

Essay
Culture
Doubt
Music
Psychology
9 min read

What happens when perfect plans are outsmarted by the world?

There may be delight hiding in the doom.
Two people sit and stand next to a grand piano on a stage.
Striking the wrong note.
Polyfilm.

If I’ve learned anything at all from decades working with businesses, it’s that they love an acronym. For a while the acronym we loved was VUCA. Not a nuclear jet nor a foot wart, VUCA emerged from the leadership theories of Warren Bennis and Burt Nanus to reflect the Volatility, Uncertainty, Complexity and Ambiguity of contemporary leadership. Nothing gets a roomful of executives nodding sagely than the observation that we live in a VUCA world. For a while it felt almost sacrilegious not to evoke VUCA at some point when training leaders. It was comforting to tell people who were supposed to be shaping the world that everything was, well… a bit nuts. 

But in the last few years VUCA has lost its shine. Things have started to get too crazy, a bit too VUCA for anyone’s liking. The wars, the plagues, the natural disasters, the political upheaval, the shaking of old certainties- it’s all gone a bit super-VUCA. The acronym that once reassured us that the world tends to resist our perfect plans has been outsmarted by the world it once captured. What are we to call this permacrisis, this omnishambles, this SNAFU, when super-mega-hyper-VUCA just sounds stupid? A new acronym was needed. Enter stage left- BANI, the invention of futurologist Jamias Cascio to designate the way things are now: Brittle, Anxious, Non-Linear, Incomprehensible. We’ve had a romantic breakup with the world- you’re not like it used to be, you used to be fun, you’ve changed!  

In March, Seen & Unseen celebrates its second anniversary. We are two years old. Old enough to appreciate a birthday cake, too young not to burn our fingers on the candles. I’ve been writing for the site since the beginning and to this day feel surprised that this quirky mishmash of a brainfart I keep writing is still accepted for publication each month. Either the folks at Seen& Unseen are pathologically kind to their own detriment, or my monthly missive of misery is not quite as off the wall as I fear it might be.  

When I look at the world, I feel like we’re in a football match with no referee. I keep shouting foul and looking for someone to blow the whistle. It feels like the Tower of Babel. Even the technologies we thought would unify us have made us incomprehensible to one another. Like the scene in That Hideous Strength (the third book in C.S. Lewis’ Cosmic Trilogy) where a roomful of people is magically befuddled. They can no longer understand each other, and anyone who rises to take charge of the situation speaks gibberish that only adds volume to the babble. We don’t need any more opinions. We certainly don’t need any more people with misplaced certainty they have the answer. 

To be honest, I’ve just run out of ideas. I’m confused, baffled, clueless. But what embarrasses me most is not my helplessness, it’s my hope. For some reason, in jarring contrast to the circumstances, I can’t shake off the sense that ultimately all this will make sense, that breakdowns lead to breakthroughs. We’re in the unbearable part of the story where everything goes wrong, but if we put the book down now, we’ll think that was the end of it, when it was really just the set up. Pretty much everything I’ve written for Seen & Unseen over the last two years equates to: grief, this looks bad, but maybe there is more to it than it appears. 

There is another anniversary being celebrated this year. This January marked the fiftieth year of a musical event so remarkable that a new dramatization of it premiered at the Berlin Film Festival to mark the occasion – the recording of The Köln Concert. (Watch the trailer of Köln 75.) If we are looking for a story of how beauty emerges from disaster, this one is worth telling. The event was organised by eighteen-year-old Vera Brandes, at that time the youngest concert promoter in Germany. She booked the Cologne Opera House, but given that it was a jazz concert, it was scheduled to begin at 11:30pm following an opera performance earlier that evening.  

The performer, jazz pianist, Keith Garrett travelled to the concert from Zurich. But rather than flying, he sold his ticket for cash and opted to make the 350-mile trip north with his producer Manfred Eicher in a Renault 4. He had not slept well for several nights and arrived late afternoon in pain, wearing a back brace, only to discover that the opera house had messed up. The Bösendorfer 290 Imperial concert grand piano he had requested had been replaced by a much smaller Bösendorfer baby grand the staff had found backstage. The piano was intended for rehearsals only, in poor condition, out of tune, with broken keys and pedals. It was unplayable. Jarrett tried it briefly and refused to perform. But Vera Brandes had sold 1,400 tickets for the evening. So, while he headed out to eat, she promised to get him the piano he required. 

But it was not to be. The piano tuner who arrived to fix the baby grand tells her a replacement is impossible. It was January in Northern Germany, the weather was wet and cold, and any grand piano transported in those conditions without specialist equipment would be damaged irreparably. They had to stick with the piano they had. Keith Jarrett’s meal didn’t go well either. There was a mix up at the restaurant and their food arrived late. They barely had chance to eat anything before returning to the venue. And when Garratt saw the tiny defective Bösendorfer still on the stage, he again refused to play, only changing his mind because Eicher’s sound-engineers were set up to record.  

So the concert begins. A reluctant pianist – tired, hungry and in pain – sits at a ruined piano, and records the bestselling piano solo album and bestselling jazz album. Ever. He improvises for over an hour. Starting tentatively, exploring the contours, befriending the limitations of his damaged instrument – learning its capabilities as he plays. But soon Jarrett is whooping, yelling and humming with delight as he extracts beauty from the brokenness. The limited register forces him to play differently. The disconnected pedals become percussion. By the time he reaches the encore, the joy of his playing is irrepressible – it sends shivers down the spine. And when he finishes, the applause goes on. Forever.  

Jarrett pulled off an impossible feat and sealed his reputation as one of the greatest pianists of his generation. And I take heart from the event, because when I face the world, I sometimes imagine I feel like he did facing that piano. Tired and pained and doubtful any good will come of playing. Can I order a new world, please? One more to my liking. One less likely to hurt. Yet I can’t quite shake off the intuition that there may be delight hiding in the doom, a treasure only unearthed by those willing to play. 

I am drawn to Job. He is a hero to all those who are sick of the answers of others but have no answers themselves. 

This year I celebrate my own anniversary. I was born seven months after that fateful night in Cologne, in the equally salubrious town of Birkenhead. This is my fiftieth year too. The 3:15pm of life: too early to clock off, too late to start anything new. If living is a race between maturity and senility – gaining the wisdom to live before losing our marbles – then I’m odds-on for a photo finish. The evidence accumulates daily that I am likely to live longer than most of my vocabulary.  

Jung held a positive view of old age. He viewed it as the time for religion to ripen. And I can’t help agreeing with him. The older I get the closer God seems. As muscle mass thins the spirit deepens. Outwardly I’m fading away, inwardly I am being renewed day by day. This undoubtedly underlies my hope of beauty arising from our brokenness. In some small and barely noticeable way it is already happening in me. And I know I’m not alone in that.  

Jung also wrote about Job- the Hebrew epic of suffering and restoration. Job’s life is like one of those old blues songs. He loses his wife, his kids, his home, his health. He’s left broken, infested with sores and sitting in the dust. If you’ve been in a situation like that, you’ll know that even the most well-meaning friends can respond with surprising incompetence. Job’s friends are no different. They are true believers in Just-World Theory, the universal human tendency to assume that if bad things happen to us we must deserve them, we must have been bad. They live in a world ultimately governed by the kind of instant karma that causes car crashes on YouTube, and they’re keen to teach Job the way the world really is.  

But Job resists them at every turn. He may have a proverbial reputation for patience, but he is anything but patient. I used to think this was a story about a man defending his innocence, but it’s much more than that. It’s the story of a man who goes through a breakup with God. He once lived a life of goodness, abundance, and gratitude in which he knew God as attentive and lovingly present. His friends are not just arguing that he’s being punished for some undisclosed sin, but that he’d always been wrong about God. He’d never known God- not really. The God they knew was volatile, capricious, arbitrary, vicious - like a rescue dog, you never quite knew when he would turn. And Job’s suffering was the proof of it. 

The problem for Job is that he has no clue why he is suffering, but he will not let his friends obliterate the history he has shared with heaven. He knows God to be utterly faithful, constantly present, sublimely attuned, hugging the contours of his life as the sea hugs the shore. He wants nothing to do with a fickle god who falls asleep on the job or flounces off the first time we let him down. He rejects the here-again gone-again god of his friends. Sometimes, to know God, we need to reject those who claim to speak for God.  

The weird thing in Job’s story is that eventually God shows up. Over the course of the narrative, he has asked God 122 questions, and God responds with 61 of his own. The questions are rhetorical- they point to all the places God is present that Job isn’t, all the things that God knows that Job doesn’t, all the things God has done that Job hasn’t. And by the end, Job is satisfied, his friends are dismissed, and his life is restored. God is as Job expected, intimately present but ultimately mysterious. He was right to reject the obtuse certainties of his friends and face the pain of the world with a cultivated sense of unknowing. 

When I ponder how best to bring beauty out of a BANI world, how best to play its brokenness like Jarret played his Bösendorfer, I am drawn to Job. He is a hero to all those who are sick of the answers of others but have no answers themselves. He is also a hero to those who, despite all evidence to the contrary, cannot smother their hope. Those who discern the leavening yeast sown in the hearts of humans across the planet; too inconspicuous to make the news, but destined to rise when the time is right.

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Watch the Köln 75 trailer