Guidance note 1

The children’s nurse will begin by assessing the situation, the context and the individuals involved. By reflecting on the situation and approaching it from a deontological perspective, the nurse will ascertain that they have a professional duty and obligation to tell the truth to Sara. The nurse is less concerned with the consequences and it is more their belief that it is their duty to adhere to the principle of veracity at all times. The nurse believes that it is morally indefensible to engage in any act of lying or deceit. Furthermore, the nurse feels bound by the Code of Professional Conduct (NMC 2018), which reminds us that all actions are performed in the patient’s best interest. The nurse believes that as an individual Sara has the right to be told the truth regardless of the consequences of telling her. Such an approach reflects Kant’s duty-based moral theory, which demands an absolute adherence to rules and duties and respect for autonomy (Kendrick 1994). The children’s nurse is concerned that Sara will not be able to exercise autonomy if she is not informed of her diagnosis.

In contrast, if the nurse believes that Sara should be told the truth but at the same time takes a utilitarian approach, they will be concerned that the consequences of the truth may cause more harm rather than ‘good’. This is where a conflict of principles can arise. The nurse is motivated to do ‘good’ (principle of beneficence) and avoid harm which is the principle of non-maleficence. For further reading see Beauchamp And Childress Four Principles Framework (NursingAnswers.net 2018).

Utilitarians appraise the moral worth of an act by considering the consequences or end result; the act should bring about the greatest benefit for the greatest number (Vearrier & Henderson 2021). Thus, Sisk et al. (2016) encourage practitioners to consider how best to provide the greatest benefit for patients while doing the least harm. The children’s nurse will also know that Sara already has insight into her condition and suspects that something has changed. Feelings of fear and uncertainty may be expressed by the patient and according to Sisk et al. (2016) many children with a terminal cancer illness will have some insight into their condition and know that something is wrong even when they are not informed. Asikli and Er (2021) reported on how 18 children, during their stay in pediatric oncology and haematology clinics, viewed the nurse and physician’s care. The virtue most emphasised by the children was honesty. Of particular significance the children conveyed the importance of communication from the nurse and physician and the need to be honest about their cancer condition. The children also valued their parents’ honesty towards them as a child and that they were kept informed.

Traditional objective moral theories such as deontology and utilitarianism may not be appropriate alone, and virtue ethics, which includes virtues such as honesty, compassion and integrity, should be considered. For further reading and discussion of virtue ethics, refer to Oakley (2015). See Table 5.1.

Guidance note 2

In order for the children’s nurse to make effective planning, issues such as when this information will be shared with Sara, who will disclose such information, and where the best venue is for this to take place need to be decided. The children’s nurse needs to consider first of all who will be best placed to give this information. In general, a member from the healthcare profession tends to adopt the role of informing the patient about their diagnosis. According to Ekberg et al. (2021), considerable advancement has been achieved in developing high-quality evidence to inform conversations with patients about their condition and end of life concerns. However, when it comes to communicating a cancer diagnosis with a young person it is not without great difficulty. Sometimes a family member may feel they are best placed to impart such information, but this can prove to be an immense emotional challenge for the parent/guardian and there should always be support for the individual and patient. Henry et al. (2021) point out that clinicians need to be cognizant of the individual’s and family needs, decision-making preferences and cultural norms when sharing a diagnosis. For further reading and discussion refer to Wiener et al. (2013) and Henry et al. (2021).

It is acknowledged that factors such as age and maturity play a key role in the detail and extent of cancer-related information that is shared with a child (Asikli and Er 2021). They further assert that parents should be included thus considering how much information the child wants to obtain and in a way that the child will understand.

Initially, Sara’s parents did not want Sara to be told about the change in her condition. The issue of paternalism versus autonomy arose here. Her father felt that if Sara heard such information she would not be able to cope and that the truth could possibly destroy any hope that his daughter had. If the children’s nurse agreed with Sara’s parents and they had decided to withhold such information, then both the nurse and parents would have been exercising paternalism. Bartholdson et al. (2015) point out that it can present a challenge for the healthcare professional when there is a decision to withhold the information from the patient and to consider a decision based on ‘the professional knows best’ or respect for the patient’s autonomy.

On the other hand, let us consider at how non-disclosure of the truth/information might affect the patient. Limited information sharing can lead to the patient not possessing important information which can affect the ability to make sound decisions about their care and future treatment plans. Sisk et al. (2016) point out that by keeping the younger person informed you are treating them with the utmost respect. However, they similarly argue that the child should not be forced into disclosure discussions or feel they have been lied to. Rost and Mihailov (2021) offer an informed debate around disclosure. Whilst they argue disclosure can strengthen the child–parent, child–physician and parent–physician relationship, they equally point out the need to consider the child’s wishes. In order for the young person to be able to make informed decisions, the truth needs to be disclosed and answers to questions asked need to be given in a meaningful and sensitive manner. It is necessary that the correct amount of information must be shared with young people at the right level for their current understanding. Raz et al. (2016) point out that sensitivity and careful judgement in how this information is shared must be considered. Thus Sisk et al. (2016) argue that effective communication that reflects the child’s needs is paramount. Therefore, each situation must be carefully assessed and planned on an individual basis and the interests of the young person must remain the focus and central in the decision-making process.

If the information is shared with Sara, then she can make informed choices in partnership with the healthcare professional and her parents. According to Bartholdson et al. (2015), autonomy is a key prevailing ethical principle. All parties can then engage with Sara in decision-making about the right care for her. This reflects a more family-centred approach. See Table 5.2.

Guidance note 3

Careful thought must be given to how information is imparted. A virtue ethics approach is appropriate here and in Sara’s situation the nurse must be able to demonstrate compassion, a friendly and caring approach, sensitivity, and respect. When any aspect of care is being implemented, the young person needs to feel valued, and meaningful communication must take place. This can be facilitated in a venue where the individual is able to discuss their concerns. Hence, the child should be encouraged to ask questions about their condition and to express their anxieties and fears (Asikli & Er 2021). The children’s nurse needs to take into consideration what has already been communicated to Sara, what she has already heard or not heard and indeed misunderstood. Thought must be given to the choice of words and terminology used when communicating with Sara about her situation. Explanations should not be misleading and time needs to be afforded so that Sara is able to express her feelings.

In order for the nurse and Sara’s parents to be able to communicate effectively with Sara there needs to be trust and this trust will only develop and be therapeutic whenever the children’s nurse/patient relationship embraces truth telling. If the professional is striving to achieve being honest with the individual, then truth is the vehicle that surely facilitates us reaching that goal (Asikli & Er 2021). Whenever the individual knows the truth about their illness this can help with the psychological and emotional adjustment (Raz et al. 2016). However, Gillam et al. (2022) cautions how truth telling may affect the child’s overall best interests, either negatively or positively. Therefore, each child’s situation must be viewed as unique to that child and their family. Knowing what Sara’s wishes are can facilitate proper support services to be implemented into Sara’s treatment plan.

At this point let us consider possible reasons why the truth may not be communicated (see Box 5.1).