Chapter 6: Ethical dilemmas

Introduction

The previous chapters have focused on how nurses engage with professional, ethical and legal issues during the care of patients. Many times, patients will be agreeable to routine management and will provide consent for procedures and interventions. However, it is not always that case that ethical, legal and professional duties would lead to the same outcome. These duties may conflict in practice, making situations more challenging for nurses who wish to keep the best interests of the patient at heart. This chapter highlights specific ethical dilemmas that may occur in a nursing context. While the focus of the chapter is on ethics, these dilemmas will also take into account the professional and legal frameworks in which nurses work. Although the very nature of ethics suggests that there is no single right answer to ethical dilemmas, these frameworks provide a basis for ethical decision-making that all nurses should follow in practice.

Learning objectives

By the end of this chapter you should be able to:

- Identify common ethical dilemmas in nursing practice.

- Understand how patients and healthcare professionals interact to make decisions.

- Demonstrate an ability to weigh up evidence when serving the best interests of the patient.

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Common ethical dilemmas

The main ethical principles of nursing are intended to guide decision-making to ensure the best outcomes for patients, while respecting patient rights. The rights of patients include the right to autonomy, dignity, respect, justice and equality. All of these areas may be closely related when making a decision about a patient, so it is important to involve patients in the decision-making process as much as possible. The following sections of this chapter will consider key situations where ethical treatment of patients is complicated by conflicting rights and nursing obligations of care.

Patient autonomy versus nursing expertise

One of the most commonly encountered ethical dilemmas in practice relates to differences in the way the nurse and patient may view a clinical decision. Nurses have extensive training, giving them skills and knowledge of disease and treatment - generally to a greater extent than the patient. However, patients have the right to autonomy and they ultimately have the final say in the course of treatment they undergo. When the expertise of the nurse suggests one treatment path, and the opinion of the patient dictates another, this can create a challenging clinical situation (Nursing and Midwifery Council, 2015).

One example of this scenario is when patients wish to discharge early from the hospital setting. This may be against the wishes of medical and nursing staff, but the patient has a right to make this decision provided they are aware of the risks and have the freedom to make a decision (i.e. they are not forced into the decision). Unless the patient is at serious risk of harm, nurses should respect the early discharge wish. This should be clearly documented in the notes, including necessary discussions with the patient prior to discharge. Holding the patient against their will would violate their autonomy and freedom - even where knowledge and expertise would suggest that the patient should remain in hospital.

In summary, it should always be remembered that a key duty of the nurse is to serve as a patient’s advocate. This involves considering the wishes of the patient during all decision-making processes; your role is not to decide for the patient, but to provide them with all of the necessary information needed to guide their decision. Patient autonomy should always be valued in practice - even when patients make ‘unwise’ decisions. However, as a nurse, you should ensure that the risks are clear and that other options are available, providing advocacy for the patient’s best interests.

Refusal of life-saving treatment

The most serious form of treatment refusal is when a patient refuses to receive treatment that will save their life. In this situation, nursing staff and medical staff may have a clear opinion of the need to intervene, but the patient disagrees with the course of action. This may include life-saving surgery, medication use, or other interventions that will directly prevent serious harm to the patient.

When facing this situation in practice, it is important that nurses determine the capacity of the patient, examine their reasons for refusal, and determine the extent to which ethical care can be completed for that patient. Capacity should be assessed as outlined in previous chapters and it should be determined whether or not the patient is able to make this decision based on this assessment. If a patient does not have capacity to make the decision, then suitable approaches may be used to advocate for treatment, including the use of best interests decision making and the Mental Health Act 2007, if necessary. If a patient is found to have capacity and has made a clear decision to refuse care, then a more nuanced approach is required. You should make sure that the patient is aware of the consequences of treatment refusal and that they are not being coerced by others. If the patient continues to refuse life-saving treatment, then it may be necessary in some cases to seek legal and professional advice on the options available.

However, whatever your personal view of the need for treatment, you cannot force treatment on a patient or provide them medication covertly. This would be unethical and can constitute an act of harm or assault, which may have severe legal and professional repercussions. You should always engage patients in an open discussion about treatment options and act ethically to prevent risk to your own professional status.

Parents’ rights to decide for their child

The treatment of children is another area where ethical dilemmas can arise due to conflicting opinions. In the case of young children, parents have the right to determine the course of treatment and the right to refuse treatment on behalf of the child. However, nurses have a duty to consider the best interests of the patient, rather than the parents, when making decisions and therefore discussions around care decisions need to be detailed and sensitive in nature.

An example of the complexity of managing both parents and their child in practice can be seen when parents choose to refuse certain treatments or object to a prescribed treatment course. The parents may feel that alternative options are better or that the child has undergone a large amount of stress or pain already and that further treatment or interventions may be too painful or distressing. It is important to establish the reason why parents may have an opinion that differs from medical advice. You should discuss the issue with the parents in a calm and sensitive manner, asking them specifically about their concerns, ideas and expectations regarding the care of their child (Burston & Tuckett, 2015). Often, parents may feel stressed or anxious, and this could affect their judgement as to what is the best course of action to take for their child. However, provided parents have all of the relevant information, their judgement cannot be said to be impaired unless they specifically lack capacity. Parents have the right to make decisions that differ from the judgements of nursing staff and medical staff.

However, from an ethical perspective, nurses must ensure the wellbeing and health of the child at all times, as their primary duty of care is to the patient. If you feel that the parents are making a decision that could negatively affect the health or wellbeing of a child, including the refusal of interventions that may save a life, you need to act as a patient advocate. You should explain the situation carefully to the parents and the need for the intervention. Then, if the parents refuse, you may need to seek further professional or legal guidance on how to proceed. It is not acceptable to simply ignore the wishes of the parents, and ideally their consent should always be obtained before treating the child. However, in exceptional circumstances, when the welfare of the child is at risk, nurses may be legally able to intervene and manage the patient according to their best interests.

It is important to appreciate that the circumstances where parents’ wishes need to be challenged are actually rare in practice. In general, discussing all of the options with parents and facilitating informed decision-making is preferable to a more confrontational attitude. You have an ethical obligation to ensure that both the child and the parents are able to participate in the treatment course, while serving the best interests of the patient.

Another factor to consider is the ability of a child to make their own care decisions or to refuse certain forms of treatment. The law in the UK suggests that once an individual is aged 16 years or older, they are legally responsible for their own care, and are able to provide consent for procedures or treatment. For children under the age of 16 years, the situation is not as clear cut. It has been argued in the courts that age in itself should not be a deciding factor for determining the competence of an individual to give consent. Rather, children under the age of 16 years are able to provide consent when they are reasonably able to understand and process the relevant information available - as per the assessment of capacity. This is known as ‘Gillick competence,’ based on the legal case that informed this decision (Griffith, 2013).

Situations where patients and the child disagree on a course of therapy can be complex to manage and almost certainly require legal input, due to the challenging ethical nature of these circumstances. In these instances, it is important to maintain clear communication between family members and to ensure that the full repercussions of decisions are understood by all involved.

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Reflection

Think of a situation you have been in, or observed, where a patient has refused treatment, either for him or herself or for their child. What reasons could justify this decision? If a patient disagrees with a healthcare professional, are they always ‘right’ or ‘wrong’? What approaches could you take to avoid escalating the situation?

Honesty versus information

Almost every day in practice, nurses need to be able to meet the information needs of their patients. This may involve educating a patient on their condition or advising them on an appropriate form of therapy. The level of detail that nurses provide to patients should be appropriate on an individual level. However, this may not be easy to achieve in the practice setting. Nurses often have to balance the need for information with the potential negative consequences of too much information. This is consistent with the role of the nurse as an advocate for patients - you should always act to serve the best interests of the patient, but by tailoring information and care to the needs of the individual.

For instance, if a patient is extremely worried about a potential diagnosis or outcome of a test, the way you communicate risk or potential outcomes is important. If you are too honest with the patient and provide extensive details of the risks of a test, you risk alarming the patient or causing undue anxiety. On the other hand, withholding key risk information when achieving consent is bad practice, as the patient is not fully informed and thus cannot be expected to make a clear decision. In cases where patients may not desire all of the necessary information, or these details may cause anxiety or worry, the nurse should make sure to address the specific information needs of the patient. It is often not necessary to detail every risk with a procedure or medication (i.e. listing all of the known side effects of a drug - this could take some time!), but the key risks should be communicated with the patient. You should use the patient as a guide for how much information you provide, as some patients will want to know more, while others will not want to know any more than is necessary to make a decision. However, it is important that you are not dishonest to a patient if they require information, as this is unethical.

Another instance where honesty may be compromised in practice is when discussing sensitive issues with patients and family members. In one example, a patient may request that their diagnosis or prognosis is withheld from family members, as this may cause them unnecessary anxiety. As a nurse, you are obligated to follow the wishes of the patient and withhold this information. When discussing the patient care plan with the family, this situation may prove challenging for the nurse, as you cannot lie to the family, but you should respect the patient’s wishes. Therefore, you should make sure that the family are informed of all relevant details of care, while respecting the rights of the patient. When difficult conversations arise, it is often best to defer to the patient or engage with the patient, noting the needs of the family and encouraging them to share their diagnosis or prognosis. Often, it is the case that people need time to come to terms with some diagnoses, so a patient approach is needed when managing this situation.

Breaking confidentiality

As noted in previous chapters, patient confidentiality is a fundamental right and nurses should respect this at all times. However, this is not an absolute right and there may be occasions where breaking confidentiality may be necessary. As a nurse, you should carefully consider the legal and professional implications of breaking patient confidentiality when you consider it necessary. Consulting with colleagues or professional bodies, such as the NMC, may help in your decision-making.

Some instances where confidentiality may be broken include when the patient poses a serious or ‘real’ risk of harming themselves or others, when police officers require specific information on patients, and where a patient’s refusal of treatment may lead to others being exposed to a significant risk. In each of these circumstances, care should be taken to ensure that the patient has been fully informed of the implications of confidentiality and the reasons why confidentiality may be broken. For instance, if police contact you regarding a patient who is suspected of a crime (especially a violent act against a person), you are obligated to assist in their investigation. However, this should not include providing extensive medical details of the patient - the information provided should be consistent with that requested by police. For example, if the police are enquiring about a patient who may have been involved in a road traffic incident and has a broken arm, you would be at liberty to cooperate with the police, but do not need to provide details of the patient’s medical condition. The patient’s name and address should be provided, ideally with the consent of the patient.

The potential for patients to be a risk to others, either through their mental state or refusal of therapy, is a challenging clinical scenario. Patients may act aggressively or may threaten others, and as a nurse you should consider how serious this threat is and whether or not the patient intends to harm another person directly. If the risk is considered serious, then the local authorities may be contacted and confidentiality broken, though this should ideally be done with the patient’s consent. Similarly, if a patient refuses treatment for an infectious condition that poses a risk to the general public, appropriate involvement of authorities or medical professionals may be justified. In both instances, nurses should be able to justify why confidentiality was broken, based on balancing the risk to the public and the rights of the individual.

Reflection

Confidentiality is an important feature of nursing practice; even when it is broken, nurses should not share unnecessary information, sticking to the relevant facts. Imagine you have seen a patient who has threatened to harm their spouse - they have only told you of this and they have left the ward in anger. You are worried that they might go through with their threat. What do you think you could do in this situation? If you spoke to the authorities, what information should you share? Not all patients who make threats will follow through with the threat - what information may help you to decide if the patient is likely to act?

The use of restrictive measures or patient detention

There are some clinical situations where patients may act aggressively or threateningly towards staff or others, or where patients may pose a risk of harm to themselves. In such cases, it may be difficult to calm the patient down and the use of behavioural techniques may not prevent the patient from harming themselves or harming others (Stuart, 2014). These situations arise in a mental health context in particular, where patients may not have a clear understanding of their environment or may have distorted perceptions of reality, including paranoia and delusions. When confronted with a situation such as this, patients typically lack the capacity to make decisions. In these instances, the nurse needs to carefully consider the use of restrictive measures or patient detention under the Mental Health Act 2007.

The Mental Health Act 2007 is described in detail in chapter 5 and the implications of detaining a patient can lead to profound ethical challenges. As a nurse, you should only ever use powers of detention when they are absolutely necessary to avoid misuse of power and compromising the rights of the patient. Similarly, as noted in the previous chapter, the use of physical restraint, chemical restraint or restrictive practices may be considered over the top or unnecessary if used too frequently or without proper justification (Stuart, 2014). These should be considered last resorts and should all be performed in accordance with local guidelines, where available.

From an ethical perspective, it is important to remember that when these measures have to be used, you are still serving the best interests of the patient. If you did not apply these measures, the patient may cause injury or may deteriorate, leading to poorer outcomes and more severe circumstances. It is not always possible to predict how a patient’s behaviour may lead to violent or aggressive acts, but as a nurse you have a duty to anticipate these events and protect others. Research has shown that the use of seclusion and restraint can lead to dissatisfaction and unhappiness in nurses, reflecting the emotional impact of this type of patient care (Kontio et al., 2012). Therefore, you should be sure that you are only using these measures ethically and you should make sure you relate your feelings to other colleagues, in order to receive support and prevent stress.

Reflection

Consider the last patient you saw in practice where confidentiality may have been broken. How was confidentiality broken? Was it completely necessary? How did you, or the nurse, justify your decision?

Case studies

The consideration of multiple points of view in a complex care situation can bring around ethical dilemmas in practice. This especially applies when managing children and their families, where multiple ethical issues may interact with each other when trying to decide on the welfare of the patient. This is illustrated in one case from the UK, the case of Hannah Jones. The details of the case are in the public domain, after Hannah discussed her treatment and condition with the media, so there is no issue of breaching confidentiality when discussing the case.

Patient ‘Hannah Jones’

Hannah Jones came to the attention of the media in November 2008 at the age of 13 years old, as she was in need of a heart transplant but refused to have the surgery. The need for a heart transplant was related to her previous diagnosis of leukaemia and the chemotherapy she had received at the age of 5 years. The chemotherapy had weakened her heart and she only had approximately 10% heart function, leaving her breathless. As she was still actively growing, her heart would struggle to meet the demands of her body, eventually leading to serious medical problems - without the transplant, she would die.

When the doctors discussed the transplantation with Hannah, they informed her that the procedure was not without complications and may not be successful. Hannah was told that even if it was successful, she would need to be on lifelong immunosuppressant medication to avoid rejection of her new heart. One complication of immunosuppression was that her leukaemia might return, which would require further treatment, and that she would possibly need another heart transplant in the future (De Bruxelles, 2008). These were serious risks, although Hannah was clearly told that she would die if she did not receive the new heart and that this was the medical course that would be advised. Based on this information, Hannah made the decision not to proceed with the heart transplant and expressed this to doctors who were involved in her direct care. Although media reports have varied on the parents’ views on the matter, her mother was an intensive care nurse and she may have supported her daughter’s decision not to have the heart transplant.

Following Hannah’s decision not to proceed with the transplant, the child protection team at the hospital became involved in the case. Hannah’s parents were informed that an application was being made to the High Court in order to protect the wellbeing of Hannah, potentially forcing her to undergo the heart transplant against her will. A member of the child protection team interviewed Hannah in order to establish further facts, including the potential that her parents were influencing her decision and denying her access to treatment. Following this discussion, the application to the High Court was not pursued and Hannah’s wishes were honoured by hospital staff and child protection services. The final decision was of particular interest to media outlets in the UK, as the decision to honour a 13 years old girl’s wishes not to proceed with life-saving treatment was a complicated ethical and professional issue.

This case study highlights several important nursing issues that should be considered when determining the most ethical form of practice. Two main issues are notable: the age at which consent should be considered appropriate when deciding on the treatment of a child, and the balance between the patient’s decisions and the best interests of the patient. In this scenario, the patient was 13 years old, under the legal age of presumed consent to make medical decisions. Under typical circumstances, the parents of the child will often make decisions regarding the care of the child - particularly for younger children. When children have reached a suitable age where they are able to process information and understand the implications of their actions, however, this is a more complex situation. The ruling of Gillick competence in the UK suggests that provided a child or teenage patient is able to complete a capacity assessment based on their intellect and maturity, they should be able to provide consent for their own care. Therefore, based on all accounts of the conversations Hannah had with medical staff, she had a full appreciation of the consequences of her decision and had capacity to make that decision.

The second issue relates to the duty of medical care of healthcare staff in the face of life-saving treatment for a patient. In this scenario, the patient would not live long without a heart transplant and the process is the only practical option that could prolong life and preserve quality of life. Nursing staff would therefore be correct in pursuing the need for a transplantation as a valid treatment option. However, there is a need to balance length of life and quality of life in the long-term - particularly as there were significant risks of rejection and the potential for cancer to return with immunosuppression. The healthcare staff made sure that the patient and her family were made aware of the risks, facilitating an open discussion. Ultimately, the patient’s wishes were respected in light of the depth and breadth of these discussions.

Patient ‘C’

Another case study from the UK health system highlights how patients can make decisions about their care that may differ greatly from medical advice - particularly when the reasons for the decision are analysed. The case of King’s College Hospital Trust versus a 50-year-old woman (known as C) was widely reported in media during 2015. In this case, C was refusing life-saving renal dialysis following a drug overdose that left her kidneys permanently damaged.

Prior to this diagnosis, C had a number of turbulent personal relationships and was reported to have valued youth and beauty as her greatest assets in life. In 2014, she was diagnosed with breast cancer and she had reported that she was ‘kind of glad’, as she had no intentions of living into old age anyway. Despite her initial objections, C accepted treatment for breast cancer (lumpectomy and radiotherapy), but refused chemotherapy for the reason that ‘it made her fat’. Four months before her decision not to receive dialysis, she had a significant relationship breakdown which precipitated the loss of her business and home and legal trouble. She attempted to commit suicide through drug overdose, but was successfully treated, despite having significant kidney damage (Ryan et al., 2016).

The doctors managing C expressed the urgency and need for life-saving renal dialysis in multiple conversations, but met with significant resistance from the patient. Her reasoning was that she did not want to grow old and that she did not want to be restricted in her life, with a heavy focus on her beauty and youth, rather than personal health. At the time, psychiatrists involved in her case suggested that she may not have capacity to make the decision, arguing that she did not appear to understand the consequences of treatment refusal and was focusing on other issues that were of limited relevance to the medical issue at hand. Furthermore, in light of her recent suicide attempt and her loss of business and home, it was argued that she may not be in a suitable frame of mind to make a decision of this magnitude. The case was brought before the courts, as medical staff attempted to overturn the patient’s decision to essentially die at the age of 50 years, when medical treatment was a realistic option. Based on an assessment of the patient’s past medical history, decision-making processes, and current state of mind, the judge ruled that she had sufficient capacity to make the decision. The patient may have used different criteria to those of medical staff in weighing up the risks and benefits of renal dialysis use, but this did not mean that she was not aware of the consequences of her actions. The judge determined that C was able to use information provided and weigh up that information to make a decision and her decision not to receive dialysis was supported in the courts.

This case received a lot of attention in the media for a number of reasons. Firstly, because the courts supported a decision for a 50-year-old woman to be allowed to die, despite psychiatric assessment suggesting she lacked capacity to make that decision. Secondly, because of the reasons the patient provided to justify her decision not to receive dialysis. The first reason is a complex issue, as capacity can be affected by a number of factors in clinical practice and is not an absolute concept. Patients may have capacity to make some decisions and not others, and it is the duty of trained professionals to determine the capacity of the patient. In this case, psychiatrists felt that C was not aware of the consequences of her actions, despite having all of the necessary information, which suggested that she did not appropriately weigh up the information. Conversely, the judge suggested that her reasons for refusing treatment were valid, based on her personality and lifestyle, and that ignoring medical advice did not constitute a poor understanding of the life-threatening nature of her condition. Therefore, disagreements in how capacity may apply to a patient exist, despite extensive guidance on the topic. It is important that you use the principles of capacity assessment to guide decision-making, but seek legal advice when complexities arise.

The second aspect of the case drew particular media attention, as the patient did not want to lose her ‘sparkle’ or to grow old, as she felt that old age was an ugly process. These views are controversial and suggest a vanity or superficiality about the way the patient thinks about her health; rather than focusing on her kidney function, symptoms or signs, she focused on her cosmetic appearance and lifestyle. Although these reasons for refusing life-saving treatment may not be shared by the general public, it is important to realise that every patient is entitled to autonomy in decision-making. Patients have the right to make decisions considered unwise by medical staff. Furthermore, the reasons patients give for their decision should not be influential in how seriously staff take that decision, provided a capacity assessment has been conducted and the patient is judged to have capacity. Therefore, the courts were right to dismiss concerns over the patient’s objections, despite their controversial nature.

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Conclusion

In summary, this chapter provides an overview of common ethical dilemmas encountered in nursing practice. Whether you are caring for young patients, older patients, patients with learning disabilities, or the general patient population, you will encounter ethical dilemmas at some stage. There are no easy answers for many of these scenarios and decision-making can be challenging. You should always involve staff and colleagues when necessary and consult local ethics and professional guidelines when faced with difficulties. Ultimately, you should serve the best interests of the patient and adopt a sensitive and calm approach to problem solving. By utilising professional, ethical and legal frameworks to guide your decisions, you minimise the risk of harm to the patient while preserving their rights.

Reference list

Burston, A. S., & Tuckett, A. G. (2013). Moral distress in nursing Contributing factors, outcomes and interventions. Nursing Ethics, 20(3), 312-324.

De Bruxelles, S. (2008). Girl wins fight to turn down transplant. The Times. November 11th, page 3.

Griffith, R. (2013). Nurses must be more confident in assessing Gillick competence. British Journal of Nursing, 22(12), 1-10

Kontio, R., Joffe, G., Putkonen, H., Kuosmanen, L., Hane, K., Holi, M., & Välimäki, M. (2012). Seclusion and restraint in psychiatry: patients' experiences and practical suggestions on how to improve practices and use alternatives. Perspectives in Psychiatric Care, 48(1), 16-24.

Nursing and Midwifery Council (2015). The code for nurses and midwives. London: NMC

Ryan, C., Szmulker, G., & Large, M. (2016). Kings College Hospital Trust v C: using and weighing information to assess capacity. The Lancet Psychiatry, 3(10), 917-919

Stuart, G. W. (2014). Principles and practice of psychiatric nursing. London: Elsevier Health Sciences.


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