The first is perhaps the most straightforward and weighs up how the child can be benefited with the minimum of harm. To do this the goals of the proposed treatment are measured against the probabilities of success. This is quite straightforward if the case is an acute asthma attack or a chest infection in an otherwise well child, but is less clear-cut if the team are struggling with the ventilation of an infant with borderline viability who has suffered intracranial bleeds.

The consideration of patient preference can be clear-cut if the case is a young person with end-stage cystic fibrosis or a neuromuscular disease who has completed a Wishes Document. In the UK a competent patient is legally entitled to refuse medical treatment, even if it will result in their death. However, for the children’s nurse many of the patients are not mature enough to be deemed ‘competent’, and in any case the assessment of competency is not straightforward. Many children when well and rational can make a reasoned, informed decision, but as children can regress under pressure and when sick, would such a decision still reflect their views? To make matters more complex parents can overturn their child’s stated wish and although the NMC desires every children’s nurse to have the ability to advocate on behalf of the child (Crawford and Clarke 2010) it is probable that very few nurses would venture an opinion contrary to the strongly held views of the parents.

The quality of life quadrant has the potential to be emotive. The purpose of treating a child is not solely to prolong life but to maintain, improve or maintain the potential to enhance its quality. Most practitioners have a view as to what would be acceptable to them, and working with children who may have profound learning difficulties and poor mobility because of cerebral palsy, catastrophic spinal damage of massive neurological insult can help clarify these views. When these children then become ill with a treatable condition a dilemma can arise. However, ethics is not about imposing a (perhaps biased) view, but informing a view, and where a child with intervention has good prospects of returning to a state similar to the one they were in before and that was deemed to be acceptable, then contrary to stated preference treatment is indicated.

The final consideration of the quadrant matrix takes into account religious, socioeconomic and cultural factors which were not considered in the other sections. The child’s parents and spiritual advisers are best placed to advise the healthcare team on these aspects and although in future there may be some cap on state funding for radical forms of technological support which brings no perceivable and apparent benefit to the child, all that can be reasonably done to rescue the child should be done even if the best interest are unclear. Guidance from the courts have been mixed, in some cases compelling the medical team to continue therapy and in others providing guidance as to what can be done and withheld in the event of a deterioration. It is lawful to resuscitate without consent if it is deemed to be in the child’s best interests, equally there is no obligation to take extreme action where it is doubtful that there would be a positive outcome.

Another more sophisticated framework, first developed by Beauchamp and Childress (1989), also focuses on four principles and provided a simple, accessible and culturally neutral approach to thinking about ethical issues in child health care. The approach is based on four moral commitments and although the language is unfriendly the headings categorise the underpinning philosophical paradigms well:

• Respect for autonomy.
  
• Beneficence.
  
• Non-maleficence.
  
• Justice.

The four principles are sufficiently flexible to be used to support the development of a personal philosophy and views on politics, religion, moral theory, and crucially when working in an intensive care environment a stance on the quality and value of life. The four principles approach can be used to deconstruct most of the moral issues that arise in paediatric healthcare, although the individual children’s nurse/healthcare worker may have to apply these four principles to the individual problem themselves to support the decision-making process or when reflecting on moral issues that arise at work.

The four principles are regarded as prima facie. In the care of conflict the children’s nurse would have to choose between them. The four principles approach confers no rank or value among the principles and this is a source of dissatisfaction to people who would prefer fixed rules and a clear answer.

Respect for Autonomy

Autonomy (deliberate self-rule) is a special attribute of all reasoning and able individuals. If an individual has autonomy they can make their own difficult decisions on the basis of analysis and deliberation.

To have respect for autonomy is the moral obligation to respect the autonomy of others in so far as such respect is compatible with equal respect for the autonomy of all those potentially affected. Respect for autonomy has a deep base in ethical philosophy and was central in the deontological theory of Kant. In Kantian terms, respecting the autonomy of others means treating others as ends in themselves and never merely as means – one of Kant’s formulations of his categorical imperative. This is something children’s nurses understand quite well as they are familiar with the developmental stages in the perception of self.

In healthcare respecting people’s autonomy has implications for consent and confidentiality, and of course this is enshrined in the registered nurse’s professional code (NMC 2008). Respect for the autonomy of others also reduces the risk of deceit. Transparency and the absence of deceit are part of the implicit agreement among moral agents when they communicate with each other. Professionals organise their activity on the assumption that the family of the child will not deceive them.

Beneficence and Non-Maleficence

This is a balance between net benefit over possible harm and even when the child is unlikely to benefit the professional still needs to take steps not to harm and set in the perspective of a PICU there is an honest obligation to be clear about risk of intervention and the probability of harm.

Justice

Justice is often regarded as synonymous with being fair and providing equally. However people can be treated unjustly even if they are treated equally, for example, in the context of the allocation of resources a conflict can exist between providing basic health care to meet the needs of the majority and providing extraordinary resources for a few.

Outcomes

Some of the more difficult dilemmas result from the child surviving and becoming complex technology-dependent. There is a range of strategies to help these families cope with life in the community. However, this has to be a decision which is right for them and the right one for them might not be a local option. Other outcomes do not involve the survival of the child and the dilemma is how to get the best possible outcome for the family.

Organ Donation

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