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
Politics
6 min read

Assisted dying’s problems are unsolvable

There’s hollow rhetoric on keeping people safe from coercion.

Jamie Gillies is a commentator on politics and culture.

Members of a parliamentary committee sit at a curving table, in front of which a video screen shows other participants.
A parliamentary committee scrutinises the bill.
Parliament TV.

One in five people given six months to live by an NHS doctor are still alive three years later, data from the Department of Work and Pensions shows. This is good news for these individuals, and bad news for ‘assisted dying’ campaigners. Two ‘assisted dying’ Bills are being considered by UK Parliamentarians at present, one at Westminster and the other at the Scottish Parliament. And both rely on accurate prognosis as a ‘safeguard’ - they seek to cover people with terminal illnesses who are not expected to recover. 

An obvious problem with this approach is the fact, evidenced above, that doctors cannot be sure how a patient’s condition is going to develop. Doctors try their best to gauge how much time a person has left, but they often get prognosis wrong. People can go on to live months and even years longer than estimated. They can even make a complete recovery. This happened to a man I knew who was diagnosed with terminal cancer and told he had six months left but went on to live a further twelve years. Prognosis is far from an exact science. 

All of this raises the disturbing thought that if the UK ‘assisted dying’ Bills become law, people will inevitably end their lives due to well-meaning but incorrect advice from doctors. Patients who believe their condition is going to deteriorate rapidly — that they may soon face very difficult experiences — will choose suicide with the help of a doctor, when in fact they would have gone on to a very different season of life. Perhaps years of invaluable time with loved ones, new births and marriages in their families, and restored relationships. 

Accurate prognosis is far from the only problem inherent to ‘assisted dying’, however, as critics of this practice made clear at the – now concluded – oral evidence sessions held by committees scrutinising UK Bills. Proponents of Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill and Liam McArthur’s Assisted Dying for Terminally Ill Adults (Scotland) Bill have claimed that their proposals will usher in ‘safe’ laws, but statements by experts show this rhetoric to be hollow. These Bills, like others before them, are beset by unsolvable problems. 

Coercion 

Take, for example, the issue of coercion. People who understand coercive control know that it is an insidious crime that’s hard to detect. Consequently, there are few prosecutions. Doctors are not trained to identify foul play and even if they were, these busy professionals with dozens if not hundreds of patients could hardly be counted on to spot every case. People would fall through the cracks. The CEO of Hourglass, a charity that works to prevent the abuse of older people, told MPs on the committee overseeing Kim Leadbeater’s Bill that "coercion is underplayed significantly" in cases, and stressed that it takes place behind closed doors. 

There is also nothing in either UK Bill that would rule out people acting on internal pressure to opt for assisted death. In evidence to the Scottish Parliament’s Health, Social Care and Sport Committee last month, Dr Gordon MacDonald, CEO of Care Not Killing, said: “You also have to consider the autonomy of other people who might feel pressured into assisted dying or feel burdensome. Having the option available would add to that burden and pressure.” 

What legal clause could possibly remove this threat? Some people would feel an obligation to ‘make way’ in order to avoid inheritance money being spent on personal care. Some would die due to the emotional strain they feel they are putting on their loved ones. Should our society really legislate for this situation? As campaigners have noted, it is likely that a ‘right to die’ will be seen as a ‘duty to die’ by some. Paving the way for this would surely be a moral failure. 

Inequality 

Even parliamentarians who support assisted suicide in principle ought to recognise that people will not approach the option of an ‘assisted death’ on an equal footing. This is another unsolvable problem. A middle-class citizen who has a strong family support network and enough savings to pay for care may view assisted death as needless, or a ‘last resort’. A person grappling with poverty, social isolation, and insufficient healthcare or disability support would approach it very differently. This person’s ‘choice’ would be by a dearth of support. 

As Disability Studies Scholar Dr Miro Griffiths told the Scottish Parliament committee last month, “many communities facing injustice will be presented with this as a choice, but it will seem like a path they have to go down due to the inequalities they face”. Assisted suicide will compound existing disparities in the worst way: people will remove themselves from society after losing hope that society will remove the inequalities they face. 

Politicians should also assess the claim that assisted deaths are “compassionate”. The rhetoric of campaigners vying for a change in the law have led many to believe that it is a “good death” — a “gentle goodnight”, compared to the agony of a prolonged natural death from terminal illness. However, senior palliative medics underline the fact that assisted deaths are accompanied by distressing complications. They can also take wildly different amounts of time: one hour; several hours; even days. Many people would not consider a prolonged death by drug overdose as anguished family members watch on to be compassionate. 

Suicide prevention 

 It is very important to consider the moral danger involved with changing our societal approach to suicide. Assisted suicide violates the fundamental principle behind suicide prevention — that every life is inherently valuable, equal in value, and deserving of protection. It creates a two-tier society where some lives are seen as not worth living, and the value of human life is seen as merely extrinsic and conditional. This approach offers a much lower view of human dignity than the one we have ascribed to historically, which has benefited our society so much.  

Professor Allan House, a psychiatrist who appeared before the Westminster Committee that’s considering Kim Leadbeater’s Bill, described the danger of taking this step well: “We’d have to change our national suicide prevention strategy, because at the moment it includes identifying suicidal thoughts in people with severe physical illness as something that merits intervention – and that intervention is not an intervention to help people proceed to suicide.” 

 Professor House expressed concern that this would “change both the medical and societal approach to suicide prevention in general”, adding: “There is no evidence that introducing this sort of legislation reduces what we might call ‘unassisted suicide’.” He also noted that in the last ten years in the State of Oregon – a jurisdiction often held up as a model by ‘assisted dying’ campaigners – “the number of people going through the assisted dying programme has gone up five hundred percent, and the number of suicides have gone up twenty per cent”. 

The evidence of various experts demonstrates that problems associated with assisted suicide are unsolvable. And this practice does not provide a true recognition of human dignity. Instead of changing the law, UK politicians must double down on existing, life-affirming responses to the suffering that accompanies serious illness. The progress we have made in areas like palliative medicine, and the talent and technology available to us in 2025, makes another path forwards available to leaders if they choose to take it. I pray they will. 

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