Understanding the relevance of human rights in healthcare and nursing practice
Intended for healthcare professionals
CPD    

Understanding the relevance of human rights in healthcare and nursing practice

Louise Terry Associate Professor, London South Bank University, London, England
Roger Newham Senior Lecturer, School of Nursing, Institute of Clinical Sciences, College of Medical and Dental Sciences, University of Birmingham, Birmingham, England

Why you should read this article:
  • To understand the concept of human rights

  • To recognise the difference between human rights and healthcare needs

  • To be able to explain the role of human rights in relation to healthcare

While the NHS aims to respect the human rights of every individual, it also has a wider social duty to promote equality in the services it provides. This means that the rights of individual patients are not absolute, because the aim of the NHS is to improve the overall health and well-being of the nation. For example, certain treatments may be withheld from individuals because of the excessive cost to the NHS, or concerns about its clinical effectiveness. This article explains the origins of human rights and their function, and examines the relationship between nursing care and human rights.

Nursing Standard. doi: 10.7748/ns.2020.e11490

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

terrylm@lsbu.ac.uk

Conflict of interest

None declared

Terry L, Newham R (2020) Understanding the relevance of human rights in healthcare and nursing practice. Nursing Standard. doi: 10.7748/ns.2020.e11490

Published online: 09 November 2020

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:

  • Describe the concept of human rights.

  • Explain the role of human rights in relation to healthcare, particularly the relationship between individual human rights and the responsibility of the NHS to provide care for all.

  • Understand how to consider patients’ human rights as part of your nursing practice.

  • Identify how you and your team could promote human rights in the patient care you provide.

Key points

  • The NHS aims to respect the human rights of each individual it serves. However, these human rights are not absolute, because the NHS has a duty to improve the overall health and well-being of the nation

  • 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

  • There are times when a person’s healthcare needs or wants do not meet the threshold for human rights, for example requesting to be seen by a nurse of a particular ethnic identity

  • 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

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.

Box 1.

Principles of the NHS Constitution for England

  • Principle 1 – the NHS provides a comprehensive service, available to all

  • Principle 2 – access to NHS services is based on clinical need, not an individual’s ability to pay

  • Principle 3 – the NHS aspires to the highest standards of excellence and professionalism

  • Principle 4 – the patient will be at the heart of everything the NHS does

  • Principle 5 – the NHS works across organisational boundaries and in partnership with other organisations in the interest of patients, local communities and the wider population

  • Principle 6 – the NHS is committed to providing best value for taxpayers’ money and the most effective, fair and sustainable use of finite resources

  • Principle 7 – the NHS is accountable to the public, communities and patients that it serves

(Department of Health 2015)

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.

Time Out 1

Review the seven principles of the NHS Constitution for England in Box 1 and reflect on how these affect the day-to-day care you provide. For example, do you feel that you are able to work across organisational boundaries and in partnership with other organisations?

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.

Table 1.

Distinguishing between healthcare-related human rights, needs and wants

Human rightsHealthcare needsHealthcare wants
Definition
  • ‘Human rights include the right to life and liberty, freedom from slavery and torture, freedom of opinion and expression, the right to work and education, and many more. Everyone is entitled to these rights, without discrimination’ (United Nations 2020)

  • Basic human requirements that have been enshrined in law or through international treaties and conventions. There is agreement that human rights impose a collective obligation to protect and satisfy specific needs of individual human beings

  • Protected human rights are enforceable by individuals against the state

  • Healthcare needs are ‘what is required for a person to optimise their potential for successful social interaction through minimising physical and mental disability’ (Doyal 1995)

  • This is coupled with ‘a capacity to benefit from treatment, which would be determined primarily in terms of clinical outcome and effect on quality of life’ (British Medical Association 2001)

  • An external authority, such as the government, an organisation or a healthcare professional, decides what constitutes a healthcare need

  • This external authority may restrict the level of treatment offered to individuals because it has to consider the needs of all

  • ‘The boundaries [of a healthcare want] are defined by individual choice…however… the individual will tend to want the best treatment available, but may not have sufficient information to make rational choices’ (British Medical Association 2001)

  • Wants are often personal, aspirational and consumerist in origin

  • Wants are sometimes linked to people’s prejudices

  • A failure to satisfy a person’s wants may not directly affect that person’s survival or quality of life

Nursing-specific examples
  • Nurses are required to be non-judgemental and not discriminate

  • Nurses must consider the right to privacy enshrined in article 8 of the Human Rights Act 1998. For example, in the case of someone at serious risk of suicide, the nurse has to consider if it is proportionate to place them under continuous observation, even when in the bathroom for example. The right to life has to be balanced against the right to privacy

  • Medicines – for example, nurses should ensure that people with sepsis receive their antibiotics on time

  • Triage – in emergency departments, the needs of one patient may have to be prioritised over another’s

  • Nutrition – a patient might say they need a drink, but if they are awaiting surgery, the nurse may have to refuse

  • Where a patient states that they prefer to be cared for by staff of a certain ethnicity

  • Where a patient wants the district nurse to visit at a specific time so as not to interrupt a favourite television programme

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.

Box 2.

Articles of the Human Rights Act 1998 relevant to healthcare and nursing

  • Article 2: Right to life

  • Article 3: Prohibition of torture, inhuman or degrading treatment or punishment

  • Article 4: Prohibition of slavery and forced labour

  • Article 5: Right to liberty and security

  • Article 6: Right to a fair trial

  • Article 7: No punishment without law

  • Article 8: Right to respect for one’s private and family life

  • Article 9: Freedom of thought, conscience and religion

  • Article 10: Freedom of expression

  • Article 11: Freedom of assembly and association

  • Article 12: Right to marry

  • Article 14: Prohibition of discrimination

  • Article 16: Restrictions on political activity of aliens

  • Article 17: Prohibition of abuse of rights

  • Article 18: Limitation on use of restrictions on rights

Time Out 2

Examine the list of articles in the Human Rights Act 1998 that are relevant to healthcare and nursing (Box 2). Which of these articles do you think might directly affect the patients you care for? For example, do the patients you care for have the right to life? Is each individual’s right to respect for their private and family life observed in your area of practice?

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.

Moral rights

Moral rights are known as ‘pre-legal’ or ‘pre-institutional’ rights and are often used to support claims that a legal right should exist. For example, before the inception of the welfare state and the NHS, people often died unnecessarily from illnesses such as diphtheria, and campaigners often claimed there was a moral right for people to be able to access treatment and improved housing conditions (Shapiro 2010).

The notion that human rights belong to all people rather than individuals within a certain country or legal jurisdiction is based on morality. Immanuel Kant was an 18th century moral philosopher who asserted that every individual should have their dignity and personhood respected by virtue of being human, and this notion underpins modern Western concepts of healthcare (Rothhaar 2010). The Kantian concepts of dignity and inviolability of individual autonomy are reflected in the Universal Declaration of Human Rights (United Nations 1948, Formosa and MacKenzie 2014), which has been signed by more than 150 countries, demonstrating the universality of human rights.

Legal rights

Moral rights can be used to criticise the law, but the existence of a moral right does not always mean a legal right exists. For example, it could be suggested that being a parent gives a person a moral right to be looked after by their children when they age, but there is no attendant legal right. Only those moral rules that become law can be enforced as substantive rights in the courts. A substantive right is one where an aggrieved person can go to court to have their legal claim met.

Some rights are procedural rather than substantive, meaning that the right relates to whether the appropriate process was followed when a decision was made, rather than to the decision itself. For example, in the case of Johnson and Maggs v Nursing and Midwifery Council (NMC) [2013] EWHC 2140, two nurses were accused of misconduct while working in a nursing home. However, the NMC was found to have breached the nurses’ right to a fair and public hearing within a reasonable time under article 6 of the Human Rights Act 1998 because their professional conduct hearing had lasted for almost three years.

Historically, not all individuals have been regarded as having moral or legal rights. For example, in the 1980s, Hudson (1988) discussed how people with learning disabilities were often valued less than others, both by having their claims to rights rejected and by having their moral status denied or devalued. Such attitudes underpinned healthcare practices such as the sterilisation of women with learning disabilities who had no medical need for a hysterectomy and were unable to consent (Hudson 1988). Similarly, prisoners and people with mental health issues or dementia were often regarded as being of less value than others and often received inferior care (Duvall 2018).

Current UK law, through the Human Rights Act 1998 and other legislation such as the Care Act 2014, recognises each person’s moral rights and their claims to legal rights by placing obligations on healthcare organisations and professionals to support human rights. Nurses’ practice should always demonstrate respect for human rights. The British Institute of Human Rights (2020) provides practical examples of rights being supported through advocacy rather than recourse to the courts.

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.

Time Out 3

Consider the following scenario. Your area of practice is short-staffed, and the nursing staff have been told to only ‘top and tail’ patients rather than provide full bed baths. In your opinion, does this breach the patients’ human rights under article 3 of the Human Rights Act 1998 – prohibition of torture, inhuman or degrading treatment or punishment? If not, can you explain why?

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.

Time Out 4

Imagine a scenario where you witness a nurse colleague mistreating a patient physically, for example by squeezing their arm excessively when washing them. Consult The Code (NMC 2018) and consider which standards your colleague may have breached

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).

Time Out 5

Read the ICN’s (2011) position statement on human rights, which states that ‘nurses have an obligation to safeguard, respect and actively promote people’s health rights at all times and in all places.’ What is one change you could make to promote patients’ health rights in your area of practice?

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.

Time Out 6

Consider how supporting patients’ human rights relates to The Code: Professional Standards of Practice and Behaviour for Nurses, Midwifes and Nursing Associates (NMC 2018) or, for non-UK readers, the requirements of your regulatory body

Time Out 7

Now that you have completed the article, reflect on your practice in this area and consider writing a reflective account: rcni.com/reflective-account

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