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
Care
Comment
Ethics
6 min read

It's a dreadful thing when we regard the disabled, the dependent, and the different as disposable

A MND sufferer reflects on the historic vote to legalise assisted dying
A crowded House of Commons awaits a vote.
MPs await the result.
Parliament TV.

I can’t say I’m surprised, but I am disappointed. The euthanasia juggernaut has been gathering momentum throughout the western world. In this country it appeared as the Voluntary Euthanasia Society, to be later rebranded as the richly endowed Dignity in Dying. It’s been beavering away for decades, with well publicised personal stories and legal cases which have been very effective in persuading general opinion that dying is frequently nasty and that we should have the right to choose when and how to die. That organisation resisted using the term ‘suicide’, which is what they advocate, realising that it opens up the accusation of devaluing life. So, I’m not surprised that MPs have, after an impassioned debate, by a narrow majority, eventually given way to the pressure.

A fortnight ago, I had my annual check-up at the motor neurone disorder clinic and subsequently received the GP letter.

“Date seen 02/06/2025…  Diagnosis (this visit) Primary Lateral Sclerosis…  Symptom onset 2000”.

I well remember the year 2000, my voice deteriorating, my balance starting to fail me, resulting finally a year later in the consultant’s verdict, “You have a motor neurone disorder.”

I knew what that meant as at the time Diane Pretty, backed and publicised by the Voluntary Euthanasia Society, was fighting through the courts as far as the European Court of Human Rights for the right for her husband to take her to commit suicide in Switzerland in the Dignitas “clinic”. It was a frightening time to receive an MND diagnosis, and it still is today. The normal progression is both swift and relentless. However, the Motor Neurone Disease Association does say “in the majority of cases, death with MND is peaceful and dignified”.

At that time I could have been depressed; I could have known how much care I would need, how much it might eat into our savings; I could have feared the physical and emotional toll it would take on my wife; I could have been desperate about the future. Certainly I was vulnerable. Fortunately, I was of an optimistic nature and had plenty of reasons for living.

But it could easily have been otherwise. I might well have panicked and opted for a doctor to help me die, if the law debated in the Commons today was in effect. Then I wouldn’t have seen two sons getting married nor grandchildren being born and growing up. I would have missed out on twenty years of an increasingly restricted but paradoxically fulfilled life.

Of course you might argue that I’m ‘lucky’ to have, as became clear over the years, my exceptionally rare and slow form of MND, but I wasn’t to know that, as indeed none of us do despite our doctors’ best predictions. Indeed I am lucky to be alive.

However it was my experience that brought me face to face with the fact of my own mortality and the issue of assisted dying. There seemed to me to be four main drivers. First, the desire for autonomy; second, the insistence of independence; third, a sort of compassion, and fourth, finance. There were two further factors: fear of death and fear of being “a burden”.

Autonomy

It’s a modern western concept that humans are by nature autonomous beings, meaning that choice is an inalienable right. I once co-wrote a book with the title, I Choose Everything, based on a quote of Therèse of Lisieux. It was from a childhood incident, but it did not mean she reserved the right for total autonomy, but rather the opposite. As she later wrote, “I fear only one thing: to keep my own will; so take it, for ‘I choose all!’ that you (God) will!”

Absolute choice is not a virtue. Choosing where to drive your car is not a virtue as it can endanger other road users. There are many limitations on freedom or taboos that protect others in a society. Taking someone’s life directly or indirectly is a universal one. Individuals submitting to a higher authority holds a community and a nation together.  

Independence

Another related modern heresy is the ideal of independence. How utterly fatuous this is! None of us is born independent. We’re born relational. All of our lives we are interdependent. Being cared for is not to be lacking in dignity. Being 100% dependent does not deprive someone of their human dignity. Even the most disabled person is a human being made in the image of God. It is a dreadful thing when a society regards the disabled, the dependent, the different, the mentally deficient and the declining as inferior and potentially disposable. Of course the advocates of the Bill would vehemently deny that they or it implied any such thing. Yet the history of the twentieth century bears witness to how subtly a society can be seduced by the pernicious philosophy of eugenics.

Compassion

It is a modern paradox that medical advances have contributed to the illusion that death is to be feared. Yes, death has always been the last enemy and, yes, we hope it will be peaceful. But we shall all die. Contrary to received wisdom, the compassionate response to that fact of life is not to “put someone out of their misery”; compassion (literally suffering with) means to be with them in their suffering. This is what good palliative care provides, making the end of life dignified, worth living and even pain free.

As former Prime Minister Gordon Brown pertinently asked, “When only a small fraction of the population are expected to choose assisted dying, would it not be better to focus all our energies on improving all-round hospice care to reach everyone in need of end-of-life support?”

Finance

Of course palliative care costs more than facilitating patients to take their own lives. According to the Daily Mail “Legalising assisted dying would save the taxpayer £10million in NHS costs in its first year, rising to £60million after a decade, according to grim new estimates published by the government.” The estimates are indeed grim, but also attractive to politicians straining to balance the national budget. Yet they raise the fundamental question: do we want to live in a society which values money over life?

Which is the most fundamental of all the issues: the sanctity of life has been a core principle central to all the Abrahamic faiths, which undergird our culture and way of life. In the words of Job on hearing of the death of all his children, “The Lord gave and the Lord has taken away.” The start and end of life are not ours to determine. We lack the wisdom of God.

Apparently the majority of our parliamentarians have decided to place that prerogative into the hands of suggestible and distinctly fallible humans beings. We or our children shall, I fear, reap the whirlwind.

As an afterthought I have a number of friends who disagree with me, often after personal experience of watching a loved one die. I sympathise and I suppose that I must be glad for them that the MPs have represented their wishes. And I would never condemn them if they decided to choose the route of assisted dying for themselves. I hope they won’t have to.

Meanwhile I trust that, when the Bill comes to the upper house, their Lordships will fulfil their function of revising it wisely and effectively. They certainly have relevant expertise, for example in the field of palliative care - which is in danger of being squeezed following this bill.

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