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.  

Column
Books
Culture
Music
Space
6 min read

Magnificent or mundane: how do you react to the overview effect?

Creators of a book, an album and a game, can’t agree.
A small white space capsule orbits around the earth.
A SpaceX Dragon capsule orbits above Earth.
NASA.

As I write this, two Nasa astronauts – Suni Williams and Butch Wilmore (possibly the most USA-sounding name imaginable) – are preparing to leave the International Space Station to return to Earth. They were supposed to stay on the space station for eight days, but a technical problem with their spacecraft meant they’ve been stranded in space for nine months.  

Nine. Months.  

It sounds like the premise for a horror film. Two stranded astronauts slowly descend into madness as they become increasingly isolated and cut off from humanity. Written and directed by M. Night Shyamalan, probably. 

That’s a lot of time to be stuck orbiting Earth, gazing at the pale blue dot, contemplating our little corner of the universe. There’s a phenomenon called the overview effect: a shift in thinking astronauts go through when they see Earth from space. Putting the planet into the wider context of the entire cosmos leads observers to rethink humanity’s place in the universe, and what it means to be human.  I imagine Suni and Butch have had quite a bit of time to do just that in recent months.  

And the overview effect is currently having a bit of a moment in wider culture, too.  

If you went into any bookshop in the weeks before Christmas, you likely saw stacks of Samantha Harvey’s novel Orbital. It tells the story – although there’s not much by way of traditional ‘story’ in Orbital – of six astronauts on the International Space Station, pondering the nature of humanity from their lofty vantage point. 

Having won the booker prize, booksellers were keen to encourage readers to buy Oribtal. Praised by the Booker Prize judges for its “beauty and ambition”, I was looking forward to reading it, when I could. (And, let’s be honest, it’s a short book, which probably helped sales. Who has the time to read Ulysses or Infinite Jest in between school runs and weekly shops?) 

When I finally read it in January, I was left disappointed. I found a surprising lack of humanity in Orbital. With the exception of one astronaut – who spends her time mourning her recently deceased mother some 250 miles up in the sky – the characters feel somewhat paper thin; barely human. As the story meanders from person to person, never really settling on one character long enough to really develop them, it feels a bit … insubstantial?  

Maybe it’s a victim of its own hype. Maybe the not-quite-humanness of the astronauts and the listless quality of the narrative are intentional, designed to capture the ungrounded nature of life in space in both form and content. Maybe that’s being generous. Either way, I was left closing the book and shrugging my shoulders. If Orbital was supposed to offer a glimpse into that overview effect, it left me nonplussed. 

By coincidence, Steven Wilson has just released his eighth solo album: The Overview. Who is Steven Wilson, you ask? Only “probably the most successful British artist you've never heard of” according to The Daily Telegraph. With Wilson’s album currently sitting at #1 in the UK album charts, it doesn’t seem an unwarranted title.  

In The Overview, Wilson explores the overview effect across just two lengthy pieces of music. In the first, Wilson contrasts the mundanities of life on Earth with the chaos of space, calling us to attend to miracle that is humanity, thanks to lyrics written by the annoyingly talented Andy Partridge of XTC: 

“And there in an ordinary street  

A car isn't where it would normally be  

The driver in tears, about his payment arrears 

 Still, nobody hears whеn a sun disappears in a galaxy afar.” 

With Partridge’s help, Wilson manages to capture that humanity so sorely lacking in Orbital. Amid a sea of seemingly barren space, there is life here on this small, pokey planet, and the dramas and stresses of a man fretting about his debts don’t seem out of place, even when compared to the implosion of a star on the other side of the universe.  

All this makes a recent interview with Wilson all the more odd.  

When speaking about the overview effect, Wilson says “Your life is futile, it’s meaningless – and isn’t that a wonderful thing?” before doubling down: “And I do mean that. We spend so much of our time anxious, stressed, worried about things that sometimes we just need an injection of perspective.” 

For Wilson, this perspective – this overview effect – is liberating. It allows to stop navel-gazing, to pick our heads up and to realise our freedom to do whatever we want. After all, everything’s just matter in varying different arrangements:  

“The clouds have no history 

And the sea feels no sorrow 

The oxygen recycled 

And the atoms are just borrowed,”  

At the climax of the album’s second epic, Wilson sings – with more glee than it warrants –  

“There's no reason for anything  

 Just a beautiful infinity 

 No design and no onе at the wheel.” 

 Cheery stuff. 

It's easy to see why, in the same interview, Wilson rails against the concept of religion: “Religion is a classic manifestation of cosmic vertigo … To even understand even the very simplest, most basic facts about space, should be enough to disabuse anyone of the notion of God. But apparently it doesn’t.” 

It all sounds a bit like an angsty teenager encountering the New Atheists for the first time. And this edge to Wilson’s work jars uncomfortably with the humanitarian streak that runs through his music. Wilson wants (rightly) to celebrate the mundane, the ordinary, and the human. And simultaneously wants to tell us that we’re just … stuff. Just atoms arranged in one way or another. Wilson pays lip-service to the humanity missing from Orbital, but it’s superficial.  

And all this reminds me of my favourite video game ever: 2019’s The Outer Wilds. (Not to be confused with 2019’s also-space-based-but-decidedly-mediocre The Outer Worlds). In The Outer Wilds, you play as an alien with a ramshackle spaceship who sets off to explore their solar system. Except every 22 minutes, the sun explodes. When it does, you wake up on your home planet and start again. 

You use these 22-minute loops to explore the solar system, flying manually from planet to planet, and exploring every nook and cranny of them in the process. You see awe-inspiring sights and are confronting with the absolute otherness and horror of the vastness of space.  

And yet. As you explore, you come across notes left by long-forgotten civilizations. Mundane lists and frustrated exchanges between colleagues. You come across life, in other words, even if you don’t meet many other actual people. I can’t say much more than this without ruining the game: The Outer Wilds depends on your real-world knowledge to progress, and so, the more I tell you, the more I ruin.  

But, suffice it to say that this is exactly what is missing from Harvey and Wilson’s work. While they both ostensibly want to remind us of the value and the miracle of humanity, both leave me feeling cold. Both leave me with the impression that life is little more than atoms arranged one way and not the other. Just stuff.  

But in The Outer Wilds, the sun’s implosion – and all that is lost with it – is a genuine heartbreak every single time. I think about all the stories I’ve read, and the people I’ve met, and how it’s all about to be lost as a bright supernova washes over me. And then I wake up again at the start of the cycle, relieved that all is not lost.  

If you can, you should play The Outer Wilds. It’s beautiful. Really, really beautiful. More so than Orbital or The Overview. Our place in the universe can be overwhelming; we’re small, and the universe is strange and scary. But we’re not just insignificant stuff. Our stories and the people we share them with matter. And Outer Wilds captures this tension impeccably. Only it captures life’s miraculous nature in the way it deserves. 

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