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.  

Review
Books
Culture
Wildness
6 min read

My open letter to Sally Rooney: dilatasti cor meum

You enlarge my heart.
A book cover depicts a yellow and white chessboard with pieces casting shadows of people.

This is silly, I realize. You’ll never see this. But I’ve just finished Intermezzo and I’m not sure what else to do with the bright sadness upon finishing it.

I can’t imagine I am your anticipated reader. I have children your age, for heaven’s sake. You write from, and about, worlds that are, in some ways, a foreign country for me. Sometimes I read your novels like Lévi-Strauss’s field notes from his years with the Nambikwara, describing the practices and rituals and mores of some foreign tribe—except that tribe includes my own children and the students I encounter everyday. Sometimes this makes me feel very old, and tired, and a little bit sad. Not in a judgmental way. I can’t imagine how hard it is to be 23 years old today. I feel badly about the world we’ve bequeathed to the twenty- and thirtysomethings that populate your novels. Your novels give me a glimpse into how they experience it. Which is what I love about the best fiction—the way it is a technology of mindreading, teleporting us into another’s perspective.

I don’t know, maybe it’s weird and kinda creepy that an old man like me gobbles up a novel like Intermezzo. Like a kind of voyeurism. I hope not. Because, in the end, what you achieve is at once the construction and revelation of a human world. And as Terence said, nothing human is alien to me.

This will sound crazy, but from the very first pages of Intermezzo I found myself reading with a strange sort of ache in my heart. Not a pain as much as a held-breath sense of ekstasis, of being stretched and pulled out of myself. I think now I’d say I was responding to what I can only describe as the tenderness you show your characters. I don’t mean for a second that you shrink from portraying their brokenness, even their brutality at times. But only that as you track their mystery and monstrosity you situate all of it in their ineradicable humanity. And in contemporary fiction, that is rarer than some might think. It speaks to me of a fullness that characterizes the matrix of your imagination, from which these characters were born. You don’t let them escape judgment; but that judgment comes from their own social worlds, not the caustic condescension of you as the narrator. This is where your mastery of free indirect speech is so uncanny: you stay near your characters, you listen closely, but somehow in the alchemy of your prose even their own harsh self-judgment is portrayed with tenderness and understanding.

Honestly, it reminds me a lot of how the mystical tradition portrays God, that Creator of all creators, the Narrator who is in love with every feeble creature, every loathable antihero, which is to say every single one of us, protagonists in dramas we don’t realize. There’s this marvelous line in The Cloud of Unknowing where the medieval sage says, “It is not who you are or what you’ve been that God sees with his merciful eyes, but what you want to be.” This will make you cringe, but your narration echoes that. You see what Peter and Ivan want to be. And in so doing, you help me look at all the human beings around me with the same sort of eyes. Or at least I want to be that person.

OK, this is, like, crazy word association, but as I was reading Intermezzo a line of prayer kept coming to mind. You might know it. It’s from the Psalms. It’s part of Prime, the first hour of the Divine Office. St. Teresa of Ávila talks about it a lot. Dilatasti cor meumYou enlarge my heart. You dilate my heart. You widen the scope of what my heart can take in and absorb. This, in the end, is what Intermezzo does. For me, at least.

It’s funny, you know. I finished the second half of the novel while I was attending the annual conference of the Hegel Society. (I thought you’d get a chuckle out of that.) So in the margins of Intermezzo I have scribbled notes like: Recognition! Master/slave dialectic!3 But it’s really not so crazy, is it, because, like Hegel, you seem to intuit how much we long to be seen, to be recognized, and why that means passing through the crucible of forgiveness to achieve reconciliation. This is why I think you are attuned to a below-the-surface rumbling in your generation that, against all the forces of capital and Distraction, Inc. and just the bullshit of consumer nihilism, can’t quite shake a yearning, or at least a wondering, if there’s something more—something like “meaning” or significance we could feel pulled into. I love it that, in Intermezzo, this culminates in a vision of community. (I’m trying not to spoil anything here, since, ahem, my wife hasn’t been able to finish the book yet.) Being known, being seen, being forgiven, being loved. Belonging.

My aforementioned (long suffering, forgiving) wife loves a song by the Highwomen called “Crowded Table.” She plays it full blast in our kitchen when she’s preparing for dinners when she gathers beloveds near. “I want a house with a crowded table / and a place by the fire for everyone.” I thought of the bridge of the song at the end of Intermezzo.

Everyone’s a little broken
And everyone belongs.

I finished your book on a packed train from Boston to Philadelphia and decided not to be embarrassed that I was weeping. The older I get, the more paternal I become, I’m realizing. I don’t think that’s an expression of control or “paternalism” in the negative sense. At least I hope not. It’s more that the older our kids get, more of the world is filled with people who look like the children I love. I don’t mean that I infantilize them, either. I treasure the adults they’ve become.

I’m not describing this very well. What I’m trying to say is, I am just an inveterate dad. I can’t help it. So as much as I read your novel as a scholar or a philosopher or a fellow human, I couldn’t help reading it as a dad. And when I spent time with Peter and Ivan and Sylvia and Naomi, I just wanted for them what I want for my own children and their spouses—for them to know they are loved and held dear and for them to find their people. It’s silly and sappy, but I wanted to talk to Ivan and Peter and tell them: It’s possible. There is still love in the world. Even more incredibly: there is forgiveness. Intermezzo has the audacity to not only hope this but to portray it. I know it costs you something to do so in a literary world that prizes cynicism and distance.

Maybe I wept at the end of Intermezzo because it was as much a mirror as an icon. Despite the generational gap, you gave me occasion to see my own life reflected back to me. In the mirror is an us (“The that is we and the we that is I,” as Hegel put it). I look in the mirror of longing & hope that is your novel, and looking back I see my wife, Deanna, who has been forgiving me for over 35 years, letting me know I am beloved. And we’re surrounded by our children, the overflowing of our own love, these children who have become such dear friends, who have forgiven me more times than I can count. And in that mirror their spouses are alongside them, our dream come true—the beloveds they have found who forgive them and welcome them home over and over again. It’s a crowded table. And there’s always more room. Everybody’s a little broken, and everybody belongs.

I guess what I want to say is: I admire your courage to write a novel that tells the truth—that love gets the last word because it is the first word that speaks us all into being, the origin of the world.

Gratefully,

A reader

 

This article first appeared as a post on James K.A. Smith's Quid Amo Substack. Reproduced by kind permission.