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
Assisted dying
Culture
Politics
5 min read

Assisted dying and the cult of kindness 

I witnessed an assisted death. We need to be honest in the debate about it.
A tableau shows minature figures of two people, one sitting on a life size syringe and the other stands
Etactics Inc on Unsplash.

The Assisted Dying Bill is likely to be passed into law this autumn, the government having promised to ‘rush it through’. The debate will invariably be conducted in a fog of euphemistic language in which ‘compassion’ and ‘dignity’ will feature heavily on both sides, while the main point is likely to be missed: the legalisation of euthanasia or AD, marks a tectonic shift from a Christian to a post-Christian society and should be a wake-up moment for dozing Christians. 

I was recently present when my aunt, an artist who had become a Canadian citizen, died by euthanasia in her own home while in the very early stages of motor neurone disease. She was 72, divorced, living independently, fully mobile (although she had lost the use of one arm) and was laughing and joking up to the moments before the doctor (or ‘The Killer’ as her son called him) injected the first dose of the lethal cocktail. It happened at 7pm on a Tuesday evening. She had made the phone call requesting her death at 3pm the previous Sunday – yes, a Sunday. Service of a kind our NHS can only dream of. 

As a reluctant witness to what I consider a murder-suicide, I was nevertheless beguiled by the relatively clean ending (although there was some disturbing gurgling that apparently occurs as a result of the lungs filling with fluid) to a life that was about to become very difficult. Her two older siblings, including my mother, are each currently several years into slow deaths from combined Parkinson’s and dementia. 

I am an almost daily visitor and a secondary carer to my mother, and while she is mute, benign and seemingly contented, the toll on my stepfather and on me is enormous. I often pray for it all to be over – it’s an endless grind and her former self would be utterly horrified to see herself this way! – and yet, as a Christian, I have to see purpose in it. One thing it certainly does do, is force carers to be selfless and compassionate in the strict sense of the word, which is ‘to suffer with’. 

Her decision to die was the ultimate consumer choice – she availed herself of a service that promised to free her from her ailing body as quickly and comfortably as possible.

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My aunt didn’t want the trial of becoming ill and dependent, and the Canadian government gave her an opt-out which she grabbed the instant she received her diagnosis. Confirmation by two doctors that she was terminally ill and of sound mind – almost a trifling formality – got her immediate approval. She was, to use her kind of language, ‘out of here’ a mere three months later. 

How could she have been so cavalier and determined to die, despite the protests of her son, nephew and granddaughters? She was, in hindsight, a perfectly minted product of the 1960s who believed above all in doing her own thing - whatever felt right. Such notions were anathema to her Christian parents and their dutiful wartime generation but are now the norm.  

Like many who came of age to the sound of the Beatles, she toured the spiritual supermarket and picked out the nice bits from Christian, pagan and Eastern religions – predominantly those that allow you to think that life is about ‘being in tune’ or feeling good about yourself. This did most definitely not include becoming immobile and having strangers change her nappy. She believed in an afterlife, ‘love’, aliens and reincarnation but definitely not in judgement or consequences for her suicide. 

Her decision to die was the ultimate consumer choice – she availed herself of a service that promised to free her from her ailing body as quickly and comfortably as possible, with the added bonus of leaving her assets to her family. 

The truth, as the Canadian experience demonstrates, is that AD is not a slippery slope but a cliff edge.

Polls in Canada and the UK show that the vast majority would consider this a win all round. According to Opinium, 75 per cent of British adults support AD. In political terms this a ‘bridge issue’ almost without comparison, uniting 78 per cent of Conservatives with 77 per cent of Labour supporters, yet no issue should more starkly dramatise the unbridgeable chasm between Christian and secular world views. 

The sharpness of this divide has, however, been successfully obscured by the insidious (and to my mind, diabolical) Cult of Kindness that has inveigled itself into both secular and Christian space. Imitating Christian virtues, it subverts them by subtly perverting language - by using ‘compassion’ when what is meant is ‘convenience’, for example – and by making ‘happiness’ rather than self-sacrifice the highest good. This leads both sides into dishonesty and self-delusion. 
 
The biggest pro-AD lie is that it is merely an escape route for the tiny few facing the most intolerable suffering with no additional consequences. The truth, as the Canadian experience demonstrates, is that AD is not a slippery slope but a cliff edge. It is now the fifth most common cause of death and climbing by 30 per cent each year. Every seriously ill Canadian now feels some pressure to address the option. Cases of people choosing AD out of despair, depression or at the suggestion of a lazy or uncaring State official are already numerous. Those who have signed an advance consent waiver setting a date for their euthanasia in the event of their mentally incapacity, are now being terminated. In some cases, the demented refuse to cooperate and are euthanised under forced sedation. The State is already saving money and families are saving their inheritances. Life itself has been downgraded. 

The Christian side indulges in even bigger untruths. Windy episcopal speeches about advances in palliative care avoid the hard fact that denying AD involves many suffering prolonged and painful deaths while family finances are destroyed and carers worn down to a husk. The pill can’t be sugared: thou shalt not kill is absolute, not an invitation for an ethical discussion. The point is so fundamental that to avoid it and be drawn into discussing the minutiae of legislation is a betrayal of the faith. 

Christians won’t save the secular world from AD and its consequences, but the current debate is an opportunity for honesty and for Christians to save themselves from the delusion that the true virtue of compassion can be inverted to justify killing.  

The Christian religion began with an agonising death of a kind which its scriptures exhorts its followers not to fear. It’s a tough message: God doesn’t promise the comfort we would like in this life. We do have the means and the duty to alleviate much suffering, but death as a consumer choice is simply off the table.