Are we forgetting how to care?

The profound act at the heart of nursing.

Helen Cowan

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

Culture

Death & life

13 November 2024

8 min read

The deceptive appeal of assisted dying changes medical practice

In Canada the moral ethos of medicine has shifted dramatically.

Ewan Goligher

Ewan is a physician practising in Toronto, Canada.

a doctor consults a tablet against the backdrop of a Canadian flag.

Once again, the UK parliament is set to debate the question of legalizing euthanasia (a traditional term for physician-assisted death). Political conditions appear to be conducive to the legalization of this technological approach to managing death. The case for assisted death appears deceptively simple—it’s about compassion, respect, empowerment, freedom from suffering. Who can oppose such positive goals? Yet, writing from Canada, I can only warn of the ways in which the embrace of physician-assisted death will fundamentally change the practice of medicine. Reflecting on the last 10 years of our experience, two themes stick out to me—pressure, and self-deception.

I still remember quite distinctly the day that it dawned on me that the moral ethos of medicine in Canada was shifting dramatically. Traditionally, respect for the sacredness of the patient’s life and a corresponding absolute prohibition on deliberately causing the death of a patient were widely seen as essential hallmarks of a virtuous physician. Suddenly, in a 180 degree ethical turn, a willingness to intentionally cause the death of a patient was now seen as the hallmark of patient-centered doctor. A willingness to cause the patient’s death was a sign of compassion and even purported self-sacrifice in that one would put the patient’s desires and values ahead of their own. Those of us who continued to insist on the wrongness of deliberately causing death would now be seen as moral outliers, barriers to the well-being and dignity of our patients. We were tolerated to some extent, and mainly out of a sense of collegiality. But we were also a source of slight embarrassment. Nobody really wanted to debate the question with us; the question was settled without debate.

Yet there was no denying the way that pressure was brought to bear, in ways subtle and overt, to participate in the new assisted death regime. We humans are unavoidably moral creatures, and when we come to believe that something is good, we see ourselves and others as having an obligation to support it. We have a hard time accepting those who refuse to join us. Such was the case with assisted death. With the loudest and most strident voices in the Canadian medical profession embracing assisted death as a high and unquestioned moral good, refusal to participate in assisted death could not be fully tolerated.

We deceive ourselves if we think that doctors have fully accepted that euthanasia is ethical when only very few are actually willing to administer it.

Regulators in Ontario and Nova Scotia (two Canadian provinces) stipulated that physicians who were unwilling to perform the death procedure must make an effective referral to a willing “provider”. Although the Supreme Court decision made it clear in their decision to strike down the criminal prohibition against physician-assisted death that no particular physician was under any obligation to provide the procedure, the regulators chose to enforce participation by way of this effective referral requirement. After all, this was the only way to normalize this new practice. Doctors don't ordinarily refuse to refer their patients for medically necessary procedures; if assisted death was understood to be a medically necessary good, then an unwillingness to make such referral could not be tolerated.

And this form of pressure brings us to the pattern of deception. First, it is deceptive to suggest that an effective referral to a willing provider confers no moral culpability on the referring physician for the death of the patient. Those of us who objected to referring the patient were told that like Pilate, we could wash our hands of the patient’s death by passing them along to someone else who had the courage to do the deed. Yet the same regulators clearly prohibited referral for female genital mutilation. They therefore seemed to understand the moral responsibility attached to an effective referral. Such glaring inconsistencies about the moral significance of a referral suggests that when they claimed that a referral avoided culpability for death by euthanasia, they were deceiving themselves and us.

The very need for a referral system signifies another self-deception. Doctors normally make referrals only when an assessment or procedure lies outside their technical expertise. In the case of assisted death, every physician has the requisite technical expertise to cause death. There is nothing at all complicated or difficult or specialized about assessing euthanasia eligibility criteria or the sequential administration of toxic doses of midazolam, propofol, rocuronium, and lidocaine. The fact that the vast majority of physicians are unwilling to perform this procedure entails that moral objection to participation in assisted death remains widespread in the medical profession. The referral mechanism is for physicians who are “uncomfortable” in performing the procedure; they can send the patient to someone else more comfortable. But to be comfortable in this case is to be “morally comfortable”, not “technically comfortable”. We deceive ourselves if we think that doctors have fully accepted that euthanasia is ethical when only very few are actually willing to administer it.

We deceived ourselves into thinking that assisted death is a medical therapy for a medical problem, when in fact it is an existential therapy for a spiritual problem.

There is also self-deception with respect to the cause of death. In Canada, when a patient dies by doctor-assisted death, the person completing the death certificate is required to record the cause of death as the reason that the patient requested euthanasia, not the act of euthanasia per se. This must lead to all sorts of moments of absurdity for physicians completing death certificates—do patients really die from advanced osteoarthritis? (one of the many reasons patients have sought and obtained euthanasia). I suspect that this practice is intended to shield those who perform euthanasia from any long-term legal liability should the law be reversed. But if medicine, medical progress, and medical safety are predicated on an honest acknowledgment about causes of death, then this form of self-deception should not be countenanced. We need to be honest with ourselves about why our patients die.

There has also been self-deception about whether physician-assisted death is a form of suicide. Some proponents of assisted death contend that assisted death is not an act of deliberate self-killing, but rather merely a choice over the manner and timing of one's death. It's not clear why one would try to distort language this way and deny that “physician-assisted suicide” is suicide, except perhaps to assuage conscience and minimize stigma. Perhaps we all know that suicide is never really a form of self-respect. To sustain our moral and social affirmation of physician-assisted death, we have to deny what this practice actually represents.

There has been self-deception about the possibility of putting limits around the practice of assisted death. Early on, advocates insisted that euthanasia would be available only to those for whom death was reasonably foreseeable (to use the Canadian legal parlance). But once death comes to be viewed as a therapeutic option, the therapeutic possibilities become nearly limitless. Death was soon viewed as a therapy for severe disability or for health-related consequences of poverty and loneliness (though often poverty and loneliness are the consequence of the health issues). Soon we were talking about death as a therapy for mental illness. If beauty is in the eye of the beholder, then so is grievous and irremediable suffering. Death inevitably becomes therapeutic option for any form of suffering. Efforts to limit the practice to certain populations (e.g. those with disabilities) are inevitably seen as paternalistic and discriminatory.

There has been self-deception about the reasons justifying legalization of assisted death. Before legalization, advocates decry the uncontrolled physical suffering associated with the dying process and claim that prohibiting assisted death dehumanizes patients and leaves them in agony. Once legalized, it rapidly becomes clear that this therapy is not for physical suffering but rather for existential suffering: the loss of autonomy, the sense of being a burden, the despair of seeing any point in going on with life. The desire for death reflects a crisis of meaning. We deceived ourselves into thinking that assisted death is a medical therapy for a medical problem, when in fact it is an existential therapy for a spiritual problem.

We have also deceived ourselves by claiming to know whether some patients are better off dead, when in fact we have no idea what it's like to be dead. The utilitarian calculus underpinning the logic of assisted death relies on the presumption that we know what it is like before we die in comparison to what it is like after we die. In general, the unstated assumption is that there is nothing after death. This is perhaps why the practice is generally promoted by atheists and opposed by theists. But in my experience, it is very rare for people to address this question explicitly. They prefer to let the question of existence beyond death lie dormant, untouched. To think that physicians qua physicians have any expertise on or authority on the question of what it’s like to be dead, or that such medicine can at all comport with a scientific evidence-based approach to medical decision-making, is a profound self-deception.

Finally, we deceive ourselves when we pretend that ending people’s lives at their voluntary request is all about respecting personal autonomy. People seek death when they can see no other way forward with life—they are subject to the constraints of their circumstances, finances, support networks, and even internal spiritual resources. We are not nearly so autonomous as we wish to think. And in the end, the patient does not choose whether to die; the doctor chooses whether the patient should die. The patient requests, the doctor decides. Recent new stories have made clear the challenges for practitioners of euthanasia to pick and choose who should die among their patients. In Canada, you can have death, but only if your doctor agrees that your life is not worth living. However much these doctors might purport to act from compassion, one cannot help see a connection to Nazi physicians labelling the unwanted as “Lebensunwortes leben”—life unworthy of life. In adopting assisted death, we cannot avoid dehumanizing ourselves. Death with dignity is a deception.

These many acts of self-deception in relation to physician-assisted death should not surprise us, for the practice is intrinsically self-deceptive. It claims to be motivated by the value of the patient; it claims to promote the dignity of the patient; it claims to respect the autonomy of the patient. In fact, it directly contravenes all three of those goods.

It degrades the value of the patient by accepting that it doesn't matter whether or not the patient exists.

It denies the dignity of the patient by treating the patient as a mere means to an end—the sufferer is ended in order to end the suffering.

It destroys the autonomy of the patient because it takes away autonomy. The patient might autonomously express a desire for death, but the act of rendering someone dead does not enhance their autonomy; it obliterates it.

Yet the need for self-deception represents the fatal weakness of this practice. In time, truth will win over falsehood, light over darkness, wisdom over folly. So let us ever cling to the truth, and faithfully continue to speak the truth in love to the dying and the living. Truth overcomes pressure. The truth will set us free.