Chapter 4: Patient Rights

Introduction

Patient care is at the cornerstone of nursing practice and the relationship between patients and nurses underlies the effectiveness of the care process. As a nurse, you have knowledge and skills that can help to treat a patient effectively, or allow them to cope with their condition through education or resource allocation. However, although nurses have these skills and knowledge, it is vital to use them appropriately without compromising the rights of the patient. Patients have a number of rights which stem from international laws such as the Human Rights Act, including rights specific to healthcare. As a nurse or nursing student, you must understand the importance of patient rights and how they can influence your practice. This will help to prevent challenging clinical, professional and legal situations from developing.

What are patient rights?

This chapter focuses on the concept of patient rights and how these relate to nursing practice. To understand these issues, first you must understand what it means for a patient to have a right to be treated in a certain way (Royal College of Nursing, 2012). Rights are clear concepts that are universally applied to all people, or to a specific group of people. These are enshrined in law, ethical practice and professional guidelines, depending on the type of right and the extent to which that right may affect the life of the patient. Rights essentially guarantee that a patent should be treated in a certain way, or should have access to services, without prejudice or refusal. Rights underline key aspects of how humans treat one another, defining what is acceptable and unacceptable based on the potential to discriminate or harm others.

Based on this definition, rights can be closely linked to ethics in the general population, as they relate to 'right' and 'wrong' ways of treating people. However, the rights of the individual are legally enforced, unlike ethical principles, and provide clear standards for how an individual can be treated. Rights may vary across nations, depending on national laws and statutes, and may be influenced by national religious values or cultural beliefs. On an international level, the Human Rights Act (1998) provides a framework for universal human rights. The following section will consider these rights and how they apply to the healthcare setting in practice.

The Human Rights Act

The Human Rights Act (1998) has relevance to both criminal and civil law, emphasising that everybody's right to live is protected by law. The UK is signatory to the Human Rights Act and therefore healthcare practice should take place in accordance with the articles contained within the act. A number of these articles have specific relevance to the healthcare setting and should be noted by all nurses in practice. Article 2 gives every patient the right to life and values the protection of that life under law. This is clearly important for nurses to understand, as life is precious and is often endangered by ill health. Article 3 of the Human Rights Act prohibits the use of torture and inhuman or degrading treatment. This may apply to health in a number of ways, particularly when patients receive a course of treatment that may be perceived as degrading or inhuman. An example of this may be where patients are in a vegetative state and treatment is being withdrawn; provided this withdrawal is consistent with the best interests of the patient and the removal of treatment does not cause harm, this would not violate article 3, as inhuman or degrading treatment would not be present.

Article 8 of the Human Rights Act (1998) guarantees patients the right to respect for private and family life. This can be translated as the patient's right to confidentiality and autonomy, particularly with respect to their personal life and their treatment choices. All patients should be able to make decisions for themselves and have personal and private lives that are free from interference from healthcare professionals, or the excessive use of coercion.

Article 14 provides a basis for non-discriminatory practice, promoting equality in care. This is discussed further in the following section. The final relevant article of the Human Rights Act (1998) in the health setting is article 17, which prohibits the abuse of patient rights under any circumstances. Therefore, any intervention or nursing processes that have the potential to reduce the rights of the patient are to be avoided and actively discouraged in practice.

Overall, the Human Rights Act (1998) provides a wide range of rights for all patients, many of which are applicable to the healthcare setting. It is important that nurses appreciate these underlying principles when addressing patient care, as violation of any of these articles can have a profoundly negative impact on the patient and nursing profession.

Patient equality

As well as the issue of fundamental human rights, every patient has the right to be treated fairly and in a manner that does not discriminate against or stigmatise the patient. This is known as equality in care and is guaranteed to all patients under the Equality Act (2010). Every patient should have access to health and social care, regardless of their background, race, religion, beliefs or condition. As a nurse, it is important that you not only adhere to this principle when managing patients, but also promote non-discriminatory practice in every aspect of your working life (Jackson & Irwin, 2011).

Discrimination and stigmatisation can have very negative impacts on patients and nurses. Patients who experience stigma are more likely to have psychological and mental health issues compared to those who have not experienced stigma. When patients feel discriminated against or stigmatised, they are less likely to share information with health professionals or seek services, which can increase their risk of adverse outcomes. Similarly, nurses who observe stigmatising behaviour are often distressed by this behaviour and may feel that patients are being victimised unnecessarily. This can make it harder to bond with patients, reducing the potential to enhance patient care outcomes.

Discriminatory practice is particularly problematic in specific patient groups. These patients are often termed 'vulnerable', as they may be at a greater risk of adverse outcomes or stigmatisation. Vulnerable patients include patients with mental health problems, learning disabilities, or demographic features that are prone to discriminatory practice, including age, sex, sexuality, and religious beliefs. These patients are not always vulnerable, but may have an increased likelihood of discrimination in healthcare settings and society as a whole, suggesting that nurses should take extra care to protect the rights of these patients in routine practice.

Autonomy

As noted in the Human Rights Act (1998), patients have the right to autonomy in all aspects of clinical practice. Autonomy is defined by patients being able to make their own decisions and guide the outcomes of their treatment. Patients who are autonomous are able to act according to their own level of knowledge and judgment. As a nurse, you should provide care to patients that allows for patient autonomy while maintaining the ethical, professional and organisational standards that nursing care demands (Nettina et al., 2013).

Another aspect of autonomy in practice is nurse autonomy - a professional concept that recognises the ability of nurses to act and make decisions based on one's professional knowledge base and experience. Nurses should be able to act autonomously in practice to deliver individualised patient care and respond to the needs of patients as they arise (RCN, 2012). Nurses need to have a holistic understanding of patient care, be confident in their knowledge and skills and appreciate the needs of patients in order to delivery effective autonomous practice. By practising autonomously, once you have achieved the necessary level of skill and experience, you can make clear decisions and act in accordance with the wishes of the patient, without the need for constant supervision.

Privacy and confidentiality

As noted previously, patients have the right to respect for their privacy in the public and professional domains. This has clear implications for the way nurses can share patient information and how information should be managed in practice. Furthermore, the privacy needs of patents may vary depending on the individual, and therefore a person-centred approach needs to be maintained to ensure that the wishes of the individual patient are respected (Butts & Rich, 2012).

The patient's right to confidentiality and privacy relates directly to ethical practice in the nursing profession (Department of Health, 2003). When discussing patients with colleagues, it is often necessary to provide intimate medical details relevant to the discussion and refer to the patient directly. This is perfectly acceptable, as otherwise it would be almost impossible to discuss specific details about a single patient. These sorts of discussions are based on the implicit understanding that any colleagues with whom patient's details are being discussed are directly involved in the care of the patient. If other colleagues are not involved in patient care directly, then there is no professional need to involve them in the discussion, and sharing unnecessary details violates the rights of the patient.

When exchanging information, it is important to ensure that privacy is maintained to the best possible level. This means that you should be aware of your surroundings and should not engage in conversations in public settings. Even on the telephone, or on emails, information exchange should be kept as confidential as possible, as needed by the person with whom you are communicating. Privacy also entails that when you examine a patient, discuss anything with a patient, or a patient asks you for advice, you should do your best to avoid exposing that conversation or examination to others. This means that closing a curtain is essential during an examination and that conversations should be kept quiet - especially on a busy ward environment. A drawn curtain does not mean that information cannot be heard in the next bed!

As well as confidentiality in the practice setting, as a nurse who may be involved in research, you should consider how confidentiality may affect the way you share information in presentations and publications. For instance, when giving a presentation to colleagues, even within the same department, patient details should be made anonymous to prevent unnecessary sharing of details. These details often include the date of birth of the patient, the patient's name, their hospital number, and any other biographical details that are irrelevant to the medical or nursing care of the patient. The same is true for when patients are used in research intended for publication in a nursing journal. All irrelevant information should be removed, including name, date of birth, etc., and patients should either be given anonymous markers or should be grouped together to avoid being able to identify any one individual. By adhering to these recommendations, you can avoid sharing patient information by accident and maintain professional practice (Department of Health, 2003).

Situations where patients' rights may conflict with nursing opinions

The rights of patients to influence and determine their own health outcomes is set in stone and should not be compromised by nurses. However, nurses also have to respect their professional duties to provide care to patients in a range of circumstances, which may include making difficult decisions. This includes situations where the rights of the patient may be directly in opposition to the professional or legal duties of the nurse.

One example is the patient's right to confidentiality. This right protects the patient's personal and health information, and the patient should be asked permission before the use of this information outside of well-defined care contexts, while every attempt should be made to anonymise the information (Mason et al., 2013). However, this right may directly contradict the need for nurses to provide safe care to the patient and the general population. For example, when a patient may pose a danger to the public through violent action or serious threats of harm, it may be ethical to contact authorities to warn of the possible danger. However, when in doubt one should always contact a senior representative from a union before breaking confidentiality, or seek advice from a representative organisation. The decision should always be recorded in the notes and, where necessary, senior colleagues should be involved to ensure the ethical and legal justification for the decision.

In contrast to this example, the rights of patients may take precedence over the decisions or opinions of healthcare professionals in practice. For instance, any time that a patient has an option of different treatment approaches, the preference of the patient should be taken into account and used to justify the treatment option (Mason et al., 2013). This may be seen in the example of medication use for a condition where the medication is associated with side effects and the benefits of the medication may be questionable. Patients may have a better insight into the impact of medication use on their daily lives and the potential for optimal adherence. Therefore, the right to autonomy should be respected, as this may yield better outcomes for patients compared to a preferred medical treatment course. Ultimately, nursing decisions should be made with the patient's opinions and rights in mind, avoiding the potential for conflict. The person-centred approach to decision-making prevents such situations from occurring, thereby reducing the potential for disagreement between patients and healthcare staff.

Another situation where patients' rights may conflict with the obligations of the nurse is when patients refuse a course of treatment. This is discussed in the following section.

Right to refuse treatment

One of the key rights of patients is that they have the right to refuse treatment, even when this is against the advice of healthcare professionals. All patients need to give their consent before they receive any type of medical intervention. When patients are shown to have capacity (see Chapter 3) and refuse to undergo a treatment, their decision must be respected. This fundamental right applies regardless of the consequence of the refusal, even where refusal may lead to the death of the patient or their unborn child, for example. However, this refusal needs to be based on the principle that patients have made a fully informed decision and are aware of the repercussions of their actions.

When a patient refuses a treatment, it can be a challenging ethical and legal process. The rights of the patient need to be respected, but other concerns should be taken into account. For instance, nurses have a duty to maintain public health, as well as the health of the individual - so if a patient has a potentially lethal infectious disease, refusal of treatment may endanger the lives of others. Therefore, decisions involving treatment refusal can be complex and may involve legal battles in some instances. Case studies of such incidents are provided at the end of the chapter for discussion.

Patient rights, advance care planning and shared decision-making

One final point to note about the rights of a patient is the different legislative and professional frameworks that may be used to support those rights, or provide patient rights when the patient lacks capacity (see chapter 3). When a patient lacks capacity due to a progressive illness or condition, including dementia, or when they can anticipate that they may lose the ability to provide consent, certain provisions may be made. The patient may decide that they wish to complete advance care planning documents, which would allow the wishes of the patient to be carried out in the event of capacity loss, thereby preserving their rights when they are not able to express them or defend them (Griffith & Tengnah, 2014).

Advance care planning is a complex topic, with many legal and professional caveats that may govern how effective this planning can be in practice. Overall, however, as a nurse you should take into account any documentation the patient may have, including advanced care directives, which may guide your decision-making when patients cannot give their consent or input. In these instances, there may be a legal precedence for following the opinions and wishes of the patient prior to their illness or deterioration. However, as conditions can change, and not all situations can be accounted for in advance, there may be arguments against following advance care planning documentation to the letter. Whenever these decisions have to be made, it is important to keep the rights of the patient at the centre of any discussions, which should involve the multidisciplinary team and relevant professional or ethical bodies.

It should always be remembered that when a patient expresses their wish to go down a certain treatment path, this should be followed as much as possible. This also applies to family members, caregivers, or friends of the patient. This is only permissible when a family member has the power of attorney when a patient lacks capacity. Otherwise, the patient's right to autonomy guarantees that their input is the primary focus of any care decisions.

Case studies

This section provides an overview of case study literature relating to the fundamental nursing issues addressed in this chapter: upholding patients' rights and managing conflicts of rights and professional or ethical care.

The right to refuse treatment is illustrated in the case of Tony Bland, a young supporter of Liverpool football club who was involved in the Hillsborough disaster. He received significant injuries and was left in a persistent vegetative state. After three years in this state, the patient was completely reliant on medical support and machinery to sustain his life. He was technically still alive, as his brain stem function was intact, allowing him to control his heartbeat, breathing and digestion. However, the patient was not conscious, there was no reasonable hope for recovery and active treatment was not considered an option.

Based on the condition of the patient, the hospital and the patient's family sought to discontinue life-sustaining treatment and support measures, including termination of artificial ventilation, hydration and nutrition. This would lead to the death of the patient, but would be considered a way of reducing further unnecessary interventions and potential suffering of the patient.

This request was upheld by a judge based on an argument encompassing the rights of the patient and the legal precedent for facilitating death. Firstly, it was noted that the actions of the family/hospital would lead to the death of the patient and that actively brining about death is not lawful under common law. However, the family and hospital were acting through omission in removing measures to support life, rather than actively causing the death of the patient. Omission of care may also be viewed as criminal in the legal system, although in this instance the duty to act was also present. In this case, the treatment of the patient was not in their best interest and there was no prospect of the patient recovering or of his condition improving. Therefore, there was no interest in continuing to support the patient through artificial measures, as the only goal would be to prolong life.

This case highlights the importance of how life is viewed under law and how medical staff can act to either preserve life or preserve quality of life. For the patient in a persistent vegetative state, recovery is not going to happen and continued interventions may be harmful to the patient, ultimately serving no purpose other than to sustain brainstem activity. Whether this can be perceived as 'life' under article 2 of the Human Rights Act (1998) is debatable - particularly as the patient has no means of leading a full life. However, the decision to remove support measures would lead to the death of the patient and therefore one must consider the justification of this removal, based on the prognosis of the patient, the potential to do harm to the patient, and their right to autonomy. The patient lost capacity in this instance and family members and hospital staff advocated on the patient's behalf, demonstrating the right to autonomy in decision making.

A recent case that received wide converge in the UK media, was that of Ashya King - a child diagnosed with medulloblastoma (a brain tumour). The diagnosis was made in 2014 and surgical intervention was used to successfully remove the tumour, with minimal evidence of residual tumour tissue in subsequent investigations or scans. Following the surgery, however, the parents and hospital staff had noted inconsistencies in the next course of therapy. Conventional radiotherapy was proposed by the hospital, while Ashya's parents wanted to pursue an alternative type of radiotherapy - proton therapy. At the time, proton therapy was not widely used in the UK, but was available in other nations and occasionally patients could be funded by NHS England to receive therapy abroad. However, in the UK, there was no funding available or justification for the use of proton therapy in cases of medulloblastoma.

Ashya's parents had made enquiries about receiving proton therapy at a hospital in Prague and requested a referral from Southampton General Hospital. Although the content of the discussions between parents and medical staff were uncertain, based on available evidence, the parents were advised that this could not be funded by the NHS England and that conventional radiotherapy would be the safest option.

On the 28th August 2014, Ashya's parents had been granted permission to take him out of the ward and to travel around the hospital. However, the parents removed him from the hospital and travelled to Spain. The medical staff managing Ashya's care in Southampton were concerned by this action - particularly because he was being fed through a nasogastric tube. The staff felt that this was an unsafe thing to have done, and that Ashya was placed at risk of harm. Therefore, local authorities were informed and Ashya was made a ward of the court on the 29th August 2014. This required that Ashya was presented to a local hospital for immediate treatment, should be returned to Southampton General Hospital within a reasonable timeframe and that removal from this setting would be prohibited without a court order. Over the following week, Ashya's parents discussed their treatment plans with the court by video link and refused an independent oncologist assessment from the UK team. The family had decided to take Ashya for proton therapy in Prague and a clear treatment plan was put in place, based on coordination of medical teams in Spain, Prague and Southampton.

Following these discussion, the judge upheld the family's request for this treatment course and arranged for a private plane to fly them from Malaga to Prague to facilitate Ashya's treatment, which was funded by NHS England. The judge made three main points in this ruling:

1. That the welfare of Ashya is the court's primary concern.
2. The court has to respect the right to life of Ashya (article 2) and the right to private and family life (article 8) of the patient.
3. The fundamental decision of how to treat children rests with the parents and the state should only intervene when the child is suffering or is likely to suffer significant harm.

Based on the fact that a treatment plan was laid out and agreed by medical professionals, the judge suggested that Ashya was not at risk of further harm and that the family should be allowed to proceed with their preferred therapeutic course.

On reflection, there are several aspects to this case that may be worth further consideration and discussion. Firstly, there was noted confusion between parents and the medical staff regarding the right course of radiotherapy. The medical professionals were legally and professionally bound to advise on conventional radiotherapy, but the wishes of Ashya's parents could have been explored further and funding for the therapy sought. However, as national policy did not provide funding for proton therapy abroad in this condition, it is important to note that medical professionals were correct in their presentation of the most suitable treatment option. The decision of Ashya's parents to remove him from hospital was deemed irresponsible by the judge and the action to make Ashya a ward of the court was justified based on the risk of harm to the patient. Therefore, although the parents may choose the treatment of a child from a legal perspective, when they place the welfare of the child at risk, the courts may overturn the decision of the parents. This demonstrates how the rights of individuals can be contrasting and may be subject to scrutiny in the courts.

One final point to note is that the final decision to receive proton therapy was based on medical experts in the UK having no objection to the therapy, while this was the choice of the parents within a framework of a complete treatment plan. The UK medical team could not endorse or recommend proton therapy, as it was not a part of the initial management plan, is not widely available in the UK and has limited evidence in the management of medulloblastoma. However, as the patient would not be placed at harm through the therapy, the rights of the parents were upheld and the NHS facilitated patient choice as much as possible.

Conclusion

This chapter provides an outline of the importance of human rights for patients. Patients have a number of rights which should be respected and considered during any care decision. Only in exceptional circumstances can rights be challenged or overturned, and often legal challenges may be needed to pursue this route. Therefore, as a nurse you should be able to identify key rights, uphold those rights and recognise when ethical and legal problems may arise when upholding the rights of patients.

Reference list

Butts, J. B., & Rich, K. L. (2012). Nursing ethics. London: Jones & Bartlett Publishers.

Department of Health (2003). Confidentiality: NHS Code of Practice. London: DoH

Great Britain. Human Rights Act 1998 Chapter 42. (1998). London: The Stationery Office

Great Britain. Equality Act (2010). London: The Stationery Office

Griffith, R., & Tengnah, C. (2014). Law and professional issues in nursing. London: Learning Matters.

Jackson, A., & Irwin, W. (2011). Dignity, humanity and equality: Principle of Nursing Practice A. Nursing Standard, 25(28), 35-37.

Mason, K., Laurie, G., & Smith, A. M. (2013). Mason and McCall Smith's law and medical ethics. Oxford: Oxford University Press.

Nettina, S. M. & Brunner, L. S. (2013). Lippincott manual of nursing practice. London: Lippincott Williams & Wilkins.

Royal College of Nursing (2012). Human rights and nursing: RCN position statement. London: RCN