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.  

Article
Change
Death & life
4 min read

Beauty’s extraordinary masterpiece

Gathering like figures in a painting, a family grieves.
A rockpool on a beach reflects the sun, a castle stands beyond the sand dunes
Bamburgh beach, Northumberland.
Dan Russon on Unsplash.

There is one particular quality of light that I love above all other. You get it most in autumn or in spring, the times when change is on its way. It is a slightly softened light, faintly blue, which lays a muting wash over a golden afternoon. It’s as if there’s a teaspoon of milk stirred into the clarity of a May morning, a gossamer veil across a long view. Edges are merged and brushed, brilliance blends to dreaminess. It is opal, not diamond. 

We had light like that today, and it was just right in its gentleness. Because this morning we took the cardboard tube containing my cousin Billy’s ashes, and we poured them into the sea. His wife Sarah drove down from Edinburgh to join us in Northumberland, and we gathered on the shore in a place sheltered from the wind by the rocks. The Farne Islands were before us and to the north lay the blue bulk of Bamburgh Castle, with Lindisfarne – Holy Island – showing wreathed in soft haze further beyond that. 

He was too young to die, Billy, at 51. Too gifted, too clever, too kind. It was pancreatic cancer that got him, and it got him fast. Eleven months between diagnosis and death, that’s all – and here we are, shocked and saddened. It would have been his 52nd birthday today. We have had cake and prosecco. And yet we are casting what remains of him into the water – a tidal pool washed by waves and weather. 

It’s not without its funny aspects, this solemn occasion. Billy’s beloved dog Obi is with us, only just out of puppyhood, and like all vigorous young creatures is unimpressed by ceremony. He finds a decaying guillemot and begins messy chewing. We manage to get it off him, but only after a chase and much commanding. Sarah picks it up by the tip of its wing; it spreads open like a glossy black fan. She swings it into the water where Obi can’t reach it. He doesn’t care anymore as he’s just found the corpse of a seal and is going to roll… we put his lead back on. 

Dead bird, dead seal, dead man. Living place though, restless foam-flecked ocean, wheeling seagulls, wind in our hair, the beautiful light pouring over us all. And a lot of love. We make a close circle round Sarah, our arms around her and each other, absorbing her grief, sharing our own. We can’t fill the empty space, the echoing chasm of loneliness – but we can head for the pub instead, to fill our more everyday chasms with Sunday lunch. Roast beef and Yorkshires please, for everyone, and sticky toffee pud to follow. Sadness is hungry work. 

We are like figures in a painting trying to cling to others in the same painting, not understanding that we cannot be lost.  

Later on, much later, when everyone is gone, there is a spectacularly gorgeous sunset. I stand in the harbour watching it, mother of pearl colours melting silently from west to east, reflected in the sea and in the wet sand. My chest and throat and face and shoulders ache with sorrow, and a man on a bench sees me and asks if I am all right. I tell him about Billy. He asks if I would like to hear a poem he has written for his friend, who is lying in hospital with his neck broken. It is about a potter, shaping and moulding wet clay, collecting up and reusing shattered shards, creating new pieces seamed with gold. It is nice. The man is nice. And I have a sudden overwhelming feeling of being held. That underneath everything – the man, Billy’s death, the colours, the guillemot, Sarah’s aloneness, the wide wild sea – is a perfect, powerful sureness, holding all in balance. Me included. I am not a spectator in this situation, I am a part of it, one little detail in an extraordinary masterpiece. I don’t need to clutch and grasp and hold on to things. None of us do – because all are part of the same whole. We are like figures in a painting trying to cling to others in the same painting, not understanding that we cannot be lost. Creation remains complete, even when the pieces move around within it. 

It is a feeling of absolute reassurance. Thomas Aquinas (revered scholar of the ancient church) says that along with truth and goodness, beauty is one of the three Transcendentals, the unchangeable foundations of reality and the surest evidence of the divine. And it is so very peaceful there in the harbour – the huge luminous sky, wavelets hushing onto the sand, oyster catchers calling in their wild voices as they prepare for the night – that I am perfectly certain of the presence of God. So finally I can cry… for Billy, for Sarah, for my sadness. But mostly, simply, because it is too beautiful not to.