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
Culture
Fun & play
Holidays/vacations
Mental Health
5 min read

I disobeyed Disney’s command to 'celebrate happy’

You don’t have to live your best life

Natalie produces and narrates The Seen & Unseen Aloud podcast. She's an Anglican minister and a trained actor.

A family pose for a picture at Disneyland
Disneyland.

I’ve just got back from a wonderful family holiday in California. And, of course, we couldn’t take our teenage daughters to California and not go to Disneyland.  

This year marks the seventieth anniversary of Disneyland, the Californian theme park conceived and built by Walt Disney, which opened in 1955. We forget now that this was a revolutionary concept in its time and wonderfully founded on the wholesome notion of creating a place where families could immerse themselves in an imaginative world; where parents and children could play and have fun together. In our screen-obsessed, individualist, loneliness-epidemic age, that continues to be a very good idea. 

We spent two days at Disneyland which proved enough time for me to have a chat and selfie with Iron Man; become a Space Ranger firing lasers alongside Buzz Lightyear; go on a turbulent adventure through a dangerous lost temple with Indiana Jones; and even join the Rise of the Resistance to be chased by some mean-looking Storm Troopers. Good times. 

However, a point of friction for me, ironically, was the theme for Disneyland's 70th anniversary celebration: "Celebrate Happy".   

I think Disneyland is great. A place designed for families and friends to have fun together absolutely gets my jaunty thumbs up. But I got increasingly annoyed by being told I should be happy all the time. Apart from anything else, the motto was clearly coined by someone who has never experienced the greatest irony of all: Disney Leg.  

Disney Leg (grown-up name Cutaneous Vasculitis, also experienced when playing golf) is a form of small blood vessel inflammation resulting swelling, a purplish rash, burning sensation and itching caused by walking or standing for hours at a time in high temperatures. It occurs most commonly in women in their late 40s or early 50s. I was one such woman. And I can tell you for nothing that Disney Leg is no celebrator of happy.  

Disney leg may have made me more Eeyore than Tigger, but my Disney experience was also framed by reading Kate Bowler’s wonderful book, Everything Happens for a Reason: And Other Lies I've Loved. I love Kate Bowler. I want her to be my best friend, forever. I want to be her when I grow up.  

I first met her when I listened in to the Seen & Unseen Live that featured her in conversation with Graham Tomlin. She introduces herself saying, “I’m Kate. I’m a Duke professor, podcaster and author with a single mission: giving you a little more permission to admit that you’re not always ‘living your best life’. After years of being told I was incurable, I was declared cancer-free. But there’s no going back. I am forever changed by what I discovered: life is so beautiful and life is so hard.”  

For everyone.” Kate is leading her own Rise of Resistance as she resists the tyranny of the wide and pervasive culture of extreme positivity that could also be summed up as “celebrate happy”.  

If my life is a failure because I’m not happy all the time, then how do I find the courage and hope that I need when faced with suffering or challenge? 

If Kate had been there, she wouldn’t have insisted that I celebrate happy, she would have found some shade and a bucket of iced water for me to immerse my Disney ankles in. She would have listened to me describe my discomfort with compassion and empathy such that I would then also feel able to tell her about how much I was enjoying myself. 

You see, I believe that the way towards “happy” isn’t through denial of suffering. It can’t be. We all know that life can be unbearably hard as well as achingly funny. To deny one is to negate the reality of the other. And to make “happy” our life goal is to exclude so much else that is beautiful in its complexity. If my life is a failure because I’m not happy all the time, then how do I find the courage and hope that I need when faced with suffering or challenge? And suffering and challenge are an everyday part of life that we simply cannot choose to ignore. The unpaid bills, the cancer diagnosis, the broken relationship - these things don’t go away or hurt less when I insist that I’m living my best life. 

Some of the best times of my life have occurred at exactly the moment when life has been hardest. Because that’s when I’ve had to acknowledge that I’m not in control of everything; that there is something, Someone, bigger and more powerful and more glorious than anything this world can offer me. If I insist on making happiness my god, I might easily miss out on the God who loved me so much he was prepared to suffer and die for me. My best life is found not in “happiness” but in the truth of God’s sacrificial love for me. 

I don’t mean to denigrate Disney at all. I think the Disney DNA of fun and a warm welcome give the rest of us much to learn from. Did you know that the people who walk around Disneyland dressed up as the famous Disney characters are highly trained, including the golden rule: when a child hugs you, you don’t let go until they do. Isn’t that beautiful? (I wonder how that would play out if I insisted on that in my church?)  But I do want to take the focus off the demand to “celebrate happy” and be free to celebrate the wider experience of life as well. 

What I took from my Disney/Kate Bowler sandwich is that the best of life comes from embracing the highs and lows; being honest about and unafraid of mixed feelings.  

Life is, as Ronan Keating once said, a rollercoster, just got to ride it. But also, I would add, life is getting fed up in the queue to get on the ride. Life is also feeling too hot or tired and needing to sit down. Life is also looking at your photos afterwards and realising that Tinkerbell has photobombed you. And I believe that all of that is to be celebrated, along with the happy. 

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief