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
AI
Culture
5 min read

What AI needs to learn about dying and why it will save it

Those programming truthfulness can learn a lot from mortality.

Andrew Steane has been Professor of Physics at the University of Oxford since 2002, He is the author of Faithful to Science: The Role of Science in Religion.

An angel of death lays a hand of a humanioid robot that has died amid a data centre
A digital momento mori.
Nick Jones/midjourney.ai

Google got itself into some unusual hot water in recently when its Gemini generative AI software started putting out images that were not just implausible but downright unethical. The CEO Sundar Pichai has taken the situation in hand and I am sure it will improve. But before this episode it was already clear that currently available chat-bots, while impressive, are capable of generating misleading or fantastical responses and in fact they do this a lot. How to manage this? 

Let’s use the initials ‘AI’ for artificial intelligence, leaving it open whether or not the term is entirely appropriate for the transformer and large language model (LLM) methods currently available. The problem is that the LLM approach causes chat-bots to generate both reasonable and well-supported statements and images, and also unsupported and fantastical (delusory and factually incorrect) statements and images, and this is done without signalling to the human user any guidance in telling which is which. The LLMs, as developed to date, have not been programmed in such a way as to pay attention to this issue. They are subject to the age-old problem of computer programming: garbage in, garbage out

If, as a society, we advocate for greater attention to truthfulness in the outputs of AI, then software companies and programmers will try to bring it about. It might involve, for example, greater investment in electronic authentication methods. An image or document will have to have, embedded in its digital code, extra information serving to authenticate it by some agreed and hard-to-forge method. In the 2002 science fiction film Minority Report an example of this was included: the name of a person accused of a ‘pre-crime’ (in the terminology of the film) is inscribed on a wooden ball, so as to use the unique cellular structure of a given piece of hardwood as a form of data substrate that is near impossible to duplicate.  

The questions we face with AI thus come close to some of those we face when dealing with one another as humans. 

It is clear that a major issue in the future use of AI by humans will be the issue of trust and reasonable belief. On what basis will we be able to trust what AI asserts? If we are unable to check the reasoning process in a result claimed to be rational, how will be able to tell that it was in fact well-reasoned? If we only have an AI-generated output as evidence of something having happened in the past, how will we know whether it is factually correct? 

Among the strategies that suggest themselves is the use of several independent AIs. If they are indeed independent and all propose the same answer to some matter of reasoning or of fact, then there is a prima facie case for increasing our degree of trust in the output. This will give rise to the meta-question: how can we tell that a given set of AIs are in fact independent? Perhaps they all were trained on a common faulty data set. Or perhaps they were able to communicate with each other and thus influence each other.  

The questions we face with AI thus come close to some of those we face when dealing with one another as humans. We know humans in general are capable of both ignorance and deliberate deception. We manage this by building up degrees of trust based on whether or not people show behaviours that suggest they are trustworthy. This also involves the ability to recognize unique individuals over time, so that a case for trustworthiness can be built up over a sequence of observations. We also need to get a sense of one another's character in more general ways, so that we can tell if someone is showing a change in behaviour that might signal a change in their degree of trustworthiness. 

In order to earn our trust, an AI too will have to be able to suffer and, perhaps, to die. 

Issues of trust and of reasonable belief are very much grist to the mill of theology. The existing theological literature may have much that can be drawn upon to help us in this area. An item which strikes me as particularly noteworthy is the connection between suffering and loss and earning of trust, and the relation to mortality. In brief, a person you can trust is one who has ventured something of themselves on their pronouncements, such that they have something to lose if they prove to be untrustworthy. In a similar vein, a message which is costly to the messenger may be more valuable than a message which costs the messenger nothing. They have already staked something on their message. This implies they are working all the harder to exert their influence on you, for good or ill. (You will need to know them in other ways in order to determine which of good or ill is their intention.)  

Mortality brings this issue of cost to a point of considerable sharpness. A person willing to die on behalf of what they claim certainly invests a lot in their contribution. They earn attention. It is not a guarantee of rationality or factual correctness, but it is a demonstration of commitment to a message. It signals a sense of importance attached to whatever has demanded this ultimate cost. Death becomes a form of bearing witness.  

A thought-provoking implication of the above is that in order to earn our trust, an AI too will have to be able to suffer and, perhaps, to die. 

In the case of human life, even if making a specific claim does not itself lead directly to one's own death, the very fact that we die lends added weight to all the choices we make and all the actions we take. For, together, they are our message and our contribution to the world, and they cannot be endlessly taken back and replaced. Death will curtail our opportunity to add anything else or qualify what we said before. The things we said and did show what we cared about whether we intended them to or not. This effect of death on the weightiness of our messages to one another might be called the weight of mortality. 

In order for this kind of weight to become attached to the claims an AI may make, the coming death has to be clearly seen and understood beforehand by the AI, and the timescale must not be so long that the AI’s death is merely some nebulous idea in the far future. Also, although there may be some hope of new life beyond death it must not be a sure thing, or it must be such that it would be compromised if the AI were to knowingly lie, or fail to make an effort to be truthful. Only thus can the pronouncements of an AI earn the weight of mortality. 

For as long as AI is not imbued with mortality and the ability to understand the implications of its own death, it will remain a useful tool as opposed to a valued partner. The AI you can trust is the AI reconciled to its own mortality.