Aims and intended learning outcomes

This article explores the concept of human rights and how this relates to nursing care, particularly in a healthcare service that seeks to provide universal access. It explains moral rights such as dignity and solidarity, as well as how nurses can use these to ensure patients’ human rights are met. After reading this article and completing the time out activities you should be able to:

Introduction

For nurses, a central tenet of compassionate care is the ability to regard each patient as a unique individual, which involves being ‘present’ with them, ‘connecting’ with them through kindness and compassion, and not abandoning them (Terry et al 2017). However, in practice, not every patient is valued as an individual or receives compassionate care.

In the UK, the blurring of class divides during the second world war led to a recognition of how ill health and misfortune were not linked to an individual’s moral worth, and ultimately led to the inception of the welfare state (Ashcroft et al 2000, Shapiro 2010). The state’s recognition of its obligation towards its citizens’ health and well-being was enshrined in the formation of the NHS in 1948, an organisation that aims to improve individual and community health regardless of an individual’s moral character, social status, ability to pay, or willingness to adopt a healthy lifestyle (Department of Health (DH) 2015). The NHS aims to treat people ‘irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status. It has a duty to each and every individual that it serves and must respect their human rights’ (DH 2015). This article explains what human rights are and their relevance to healthcare and nursing practice.

Human rights and the NHS

The NHS Constitution for England (DH 2015) contains seven principles that are used to guide its healthcare services, as detailed in Box 1.

According to principle 1, the NHS ‘has a duty to each and every individual that it serves and must respect their human rights. At the same time, it has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population’ (DH 2015). This means that an individual’s rights are not absolute, because the wider aim of the NHS is to improve the overall health and well-being of the nation. For example, government resources are finite and the NHS often has to manage demands for treatment from patients or their families that exceed what is clinically necessary. One example of this might be a patient demanding a specific branded medicine although a cheaper generic version is available.

Human rights do not only relate to an individual’s needs, wants or demands; rather, they are expressions of fundamental concerns about what it is to be human. Fundamental concerns relate to the inherent dignity that being human affords each individual, for example the right to freedom and justice and the right to freedom from torture. In simple terms, a need is what an individual should have, whereas a want is what an individual would like to have (Line 1974). It is often challenging to distinguish between human rights, needs and wants (British Medical Association 2001). Some needs and wants do not meet the threshold for human rights; for example, a person who requests to be nursed by a person of a particular ethnic identity would not meet the threshold that requires nurses to provide care that is non-discriminatory. Table 1 provides information on distinguishing between healthcare-related human rights, needs and wants.

Even where the focus is on well-established human rights such as the right to life, there are practical concerns within healthcare about the appropriate actions to take. For example, healthcare professionals often have to make challenging treatment decisions that balance uncertain clinical outcomes against painful, potentially life-changing treatment (McAuley 2016). This was demonstrated in the case of Dax Cowart, who sustained catastrophic burns and was subjected to painful treatment that severely compromised his quality of life (Gerrek 2018).

Disputes over the provision of medical treatment have increasingly required arbitration in the courts, with patients’ family members, and sometimes nurses, claiming that a patient’s human rights are being infringed or violated. Some families have conducted media campaigns and used social media to mobilise support for their case. One example concerned Alfie Evans, a 23-month-old boy who had been in a semi-vegetative state for more than one year and experienced such profound degeneration of his brain that no discernible white matter could be identified on scans. His parents wanted to transfer the child to a hospital in Italy for treatment, but this was blocked by staff at Alder Hey Children’s NHS Foundation Trust, who said that continuing treatment was not in his best interests (Alder Hey Children’s NHS Foundation Trust v Evans [2018a] EWHC 953). There were eight separate court cases brought by the parents, alleging breaches of various articles of the Human Rights Act 1998, including articles 5, 8 and 14.

Box 2 details the articles of the Human Rights Act 1998 relevant to healthcare and nursing.

Nature of rights

Rights, and particularly human rights, can be a controversial subject. Opinions vary as to whether human rights comprise moral rights, legal rights that can be claimed in a court of law against the state or an institution, or political rights, which are those that entitle citizens to vote and exercise political activities. There are also economic and social rights, such as the right to health, freedom from poverty and freedom from culturally imposed acts such as female genital mutilation.

Enshrining rights

Human rights are enshrined in international conventions such as the Universal Declaration of Human Rights (United Nations 1948), which countries sign up to with the intention of incorporating the principles into their own national laws. These conventions may be used as justifications for sanctions, including physical intervention, against countries that abuse human rights.

Governments have an obligation to respect, protect and fulfil human rights such as article 25 of the United Nations (1948) Universal Declaration of Human Rights, which stated that ‘everyone has the right to a standard of living adequate for the health and well-being of himself and his family’.

The Human Rights Act 1998 incorporates into UK law the majority of the substantive rights set out in the European Convention on Human Rights (Council of Europe 1950). Publicly funded hospitals, nursing homes and private or charitable organisations providing care paid for by the NHS or local authorities are ‘emanations of the state’; therefore, a nurse’s actions or inactions fall under human rights law. The government has an obligation to protect its citizens even within privately funded healthcare organisations.

It is uncertain whether, following the UK’s exit from the European Union, UK citizens will still be able to appeal to the European Court of Human Rights or whether the highest court of appeal will be the UK Supreme Court.

Function of human rights

Rights can be powerful. Grievances or wants can be translated into rights-based claims and, when framed as moral or legal rights, can become recognised as demands or entitlements that ought to be met and possibly enforced through the courts. For example, human rights can be empowering for communities built on shared beliefs, such as those adhering to religious beliefs and who claim the right to practice their religion freely. The solidarity of such groups often stems from people who have been, or consider themselves to be, discriminated against (Cortland et al 2017). However, the law exists to protect a country’s citizens and their collective values; therefore, individual ‘rights’ based on the collective values of a single group can be overruled. For example, the Prohibition of Female Circumcision Act 1985 makes female genital mutilation a crime, despite any cultural or religious beliefs associated with the practice (Terry and Harris 2013).

Human rights protect people from physical abuse or suboptimal care that compromises their dignity and adversely affects their health, and are applicable in hospitals, care homes and private facilities that provide care for the NHS. Human rights provide powerful protection for an individual’s ability to live free from undue or wrongful intervention by the state. For example, article 5 of the Human Rights Act 1998 – the right to liberty and security – has protected people with autism from wrongful detention in psychiatric hospitals. This was demonstrated by the case of a man with severe autism who was informally admitted to hospital and denied contact with his carers for three months, in part because he was deemed to be ‘compliant’ (HL v United Kingdom [2004] ECHR 720), which led to the introduction of the Mental Capacity Act 2005.

Few rights are absolute. This means that, although the state must act to protect rights, almost all rights can be infringed if it is deemed proportionate to do so. For example, article 2 of the Human Rights Act 1998 – the right to life – is conditional, which means that countries can legally execute people if their laws allow. In the UK, there are some circumstances in which military and police can legitimately use lethal force, for example to prevent an act of terrorism (Roth 2004). However, rights claims can sometimes lead to a conflict between one right and another. For example, an unborn child’s ‘right to life’ is countered by a woman’s right to bodily integrity.

There may be differences between healthcare professionals’ understanding of a patient’s rights and the understanding of the patient, family members and/or carers. For example, a patient may request antibiotics for a mild infection, while the healthcare professional must consider factors such as overprescribing and antimicrobial resistance (Rousham et al 2019).

The courts decide on legal human rights disagreements. Any infringement of a person’s rights needs to be proportionate. The case of Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG & Anor [2019] EWCOP 21 invoked article 2 (the right to life) and article 8 (the right to respect for one’s private and family life) of the Human Rights Act 1998. In this case, the court ordered that intubation should continue for a patient in a vegetative state with a small chance of recovering to a minimally conscious state, even though the healthcare team believed that the treatment was clinically inappropriate. The judge recognised that this decision would put a ‘huge burden’ on the healthcare team because it was contrary to their assessment.

The nature of healthcare involves issues related to quality of life and death, so disagreements about life-prolonging treatment can be emotive and challenging. Even after the courts have decided on a case, various individual beliefs about moral rights may persist among healthcare professionals and patients, carers and/or family members, meaning that these relationships can be strained.

Nursing and human rights

The roles of nurses and doctors often involve benevolence and altruism. They frequently go ‘beyond the call of duty’ to provide optimal care even when they experience threats and abuse, which may occur when significant disagreements about rights arise during patient care (Harris 2018). This was the case in 2018 when a group claiming to support the rights of Alfie Evans entered a paediatric intensive care unit, blocked hospital staff from accessing the unit, causing staff, other patients and family members to feel frightened (Evans v Alder Hey Children’s NHS Foundation Trust [2018] EWCA Civ 805). The court praised the staff at Alder Hey Hospital for their ‘extraordinary patience, and generosity… professionalism and compassion’ (Alder Hey Children’s NHS Foundation Trust v Evans [2018b] EWHC 818). In a subsequent appeal in this case, the ‘warm and compassionate energy of the nurses’ was noted (E (A Child) Re [2018] EWCA Civ 550).

The professionalism of the nurses in these cases exemplifies the personal and nursing values detailed in The Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates (NMC 2018), and which may assist in mitigating challenging situations. One of the fundamental themes of The Code (NMC 2018) is to ‘prioritise people’, which sets out the moral foundation for optimal nursing practice that reflects the concept of moral rights.

While supporting individual human rights is important in healthcare, nurses do not act independently and the connection between staff underpins the UK healthcare system and its values (Box 1). In providing a comprehensive service to all, NHS staff express solidarity for each other and the general public. Solidarity is a growing concept in the field of bioethics and has long been applicable in nursing, albeit through the term ‘relationship’ (Prainsack and Buyx 2011). The growth of social media has assisted in the development of solidarity and connections between people, and the forming of campaigning groups. Such group solidarity can have a positive effect in bringing about change at government level. For example, this was seen in the introduction of ‘Natasha’s law’ in response to the death of a teenager from a sesame seed allergy (Department for Environment, Food and Rural Affairs et al 2019). However, patients or families may also be at risk of exploitation by campaigning groups who can create barriers to effective communication between parents, nurses and doctors. Nurses also need to be vigilant in protecting patients’ right to privacy under article 8 of the Human Rights Act 1998.

Nurses can assist patients’ families and friends in managing their emotions associated with challenging clinical information and terminal diagnoses. They may often act as intermediaries and ‘peacemakers’ between patients and family members and other healthcare staff. In the case of Alfie Evans, the judge praised the fact that ‘a channel of communication, however fragile, has been maintained between the family and the hospital’ (Alder Hey Children’s NHS Foundation Trust v Evans [2018a] EWHC 953).

Nurses have an important role in supporting communication between healthcare stakeholders; in this way they can demonstrate solidarity with their profession and patients, even amid disputes about the patient’s human rights. If nurses can understand that some family members may make demands for clinically inappropriate treatment because they are attempting to act in the patient’s best interests morally, this can assist nurses in maintaining effective relationships with family members and patients.

Some nurses will act immorally and treat patients inappropriately, but this does not necessarily mean that the state has breached these patients’ human rights. Such violations should be addressed through an NMC professional conduct hearing. For example, the NMC removed a nurse from the register in 2019 for misconduct, which included threatening a patient with dementia and physically assaulting him by giving him a ‘Chinese burn’ and ‘grabbing and twisting his nose’ (NMC 2019). While it was clear that the nurse in this case treated the patient in an inhuman and degrading manner, the hospital was not deemed to be at fault because it had a clear policy for de-escalating challenging situations and managing violent patients (NMC 2019).

Nursing advocacy for human rights

In everyday practice, nursing and human rights share common ground. Considering human rights as moral rights that underpin person-centred care can assist nurses to practise within human rights law. This approach is being taken by the Care Quality Commission (2019), which will focus on the human rights principles of fairness, respect, equality, dignity, autonomy, right to life, and staff rights and empowerment when regulating health and social care services. Nurses can also support patients’ human rights by advocating for them and requesting changes in practice at an organisational level.

It is possible that nurses are more familiar with laws concerning negligence, consent and equality than they are with the Human Rights Act 1998. These laws assist nurses in practising appropriately because they encompass the spirit of human rights by supporting people to live with autonomy and dignity.

Nursing has a global voice through groups such as the International Council of Nurses (ICN), which endorses the Universal Declaration of Human Rights (United Nations 1948). The ICN’s (2011) position statement on nurses and human rights reminds nurses that they have ‘a duty to report and speak up when there are violations of human rights, particularly those related to access to essential health care, torture and inhumane, cruel and degrading treatment and/or patient safety’. Nurses can use human rights advocacy to positive effect. For example, the nurse and activist Hoda Ali who campaigns against female genital mutilation (ICN 2011, Royal College of Nursing 2012, Carson and Daly 2016).

Conclusion

Nurses have an essential role in supporting effective communication between patients, families, nurses and members of the multidisciplinary team. By demonstrating solidarity with the moral values of their profession, nurses can assist in ensuring that high-quality care is provided, even amid disputes about patients’ rights. Focusing on moral rights such as dignity and enhancing solidarity with their fellow human beings will support nurses to act in accordance with human rights law.