Determining a child’s best interests

Reaching any decision concerning a child’s care must be based on what is in the best interests of the child. Assessment and determination of the child's best interests must be centred on the individual child and include consideration of the child’s health needs, their own views, safety, protection, care and overall well-being.  

Many aspects should be given due weight to assess and determine a child’s best interests. However, there is no fixed recipe for every situation. Respect for the best interests of the child and, indeed, respect for children’s participation requires a balance between what professionals (ideally all professionals working in a multidisciplinary team with an integrated approach to care) and parents consider to be the best for the child, given the illness or health problem, available treatments, effects and so on; and the child’s views on what is ‘best’ for them. Exploring children’s preferences, family culture (including participation culture), past experiences and other factors will help professionals support and facilitate the best possible decision for the child. Consideration must also be given to the children’s right to an open future, meaning that preference should be given, when possible, to options which least restrict their future choices.

 The notions of consent, assent and dissent

For certain treatments or interventions, through protocols specified by law, professionals will need to obtain the formal agreement of parents or of the child him/herself. 

According to the Oviedo Convention, the term “consent” is used when the formal agreement is given by the person concerned by treatment or act, whereas the term “authorisation” refers to the formal agreement given by the parents/legal representatives or body provided by law. 

According to the World Health Organization (WHO), informed consent “relates to the formally expressed (usually written) agreement or permission for any health intervention, such as vaccination, effective surgery, choosing or terminating a treatment.  ” 

As mentioned in section II.b., in national legislations, children’s right to informed consent to treatment can be based on age criteria. Additionally, another concept has emerged, that of children’s competencies. The notion of children’s competency was discussed in a case brought to court in the UK in 1986, where the court’s ruling stated that “whether or not a child is capable of giving the necessary consent will depend on the child’s maturity and understanding and the nature of the consent required. The child must be capable of making a reasonable assessment of the advantages and disadvantages of the treatment proposed, so the consent, if given, can be properly and fairly described as true consent.”   The so-called Gillick competency grew in importance and is increasingly recognised as a determining factor for giving children the right to consent to treatment. Assessing competency is left to the health care professionals and there is no universally agreed-upon method to do so. However, guidance will usually include assessing children’s ability to understand their situation, to weigh the different options available to them and to understand the consequences of each.

The emergence of methods and practices to assess competency have been intended to increase child inclusion, participation and rights in decision-making. This places a duty on health professionals to ensure that children are given appropriate information in a way that is understandable to them in order to facilitate their competence. It also requires that health professionals recognise that some children may require information in different ways in order to achieve the same level of understanding and competence.

Children can also, according to national legislation, provide their assent or express their dissent. The terms assent and dissent generally describe when children give their agreement or disagreement to a treatment, in situations where they do not yet have a legal right to give their consent. 

If children are considered capable of assent, their assent should be sought in addition to parental authorisation. 

In many European countries, written authorisation of parents in addition to the child’s own assent is required. 

In order to ensure that children can exercise their right to consent or assent, hospitals and other health services should put in place different measures, including:

 Adopting a hospital or health service consent policy, reflecting national legislation

 Ensuring that health professionals are aware of this policy;

 Promoting capacity building of professionals to ensure they have the knowledge and competencies to engage and

 involve children in the decision-making process in a meaningful way and that they ask for their consent to treatment whenever it is required;

 Engaging with children regularly to assess existing policies and practices, as a way to improve these and also children’s experiences of care. 

Cultural differences may lead to misunderstandings. Where appropriate a translator and/or a cultural mediator should be available during the process of information and consent/assent and in the planning of the research. This person should be familiar with medical terminology, experienced in the language, social habits, culture, traditions, religion, and particular ethnic differences. This person may need to be available throughout the medical intervention and/or clinical trial, e.g. to facilitate exchanges, adverse events reporting. 

Taking into account the national legal framework, seeking agreement should put in balance the emerging capacity of an adolescent for independent decision-making with the need for continued special protection as provided by the parents/legally designated representative in compliance with national laws. The specific aspects of disclosure to parents of information concerning adolescents should be made clear to the adolescent concerned.

For younger or non-verbal children who are not able to raise or express verbal objections, any signs of resistance or protest should be identified and discussed with the parents to assess and recognise whether the behaviour is merely an expression of an acceptable burden or can be considered a concern on intervention continuation. It should also be recognised that for many children, the people best placed to understand or interpret non-verbal indications will be the parents. 

In all circumstances, and regardless of the outcome or direction of a decision, the conclusions of any decisions made should be carefully and kindly explained to the child.

 Managing disagreements and conflicts

Inevitably, situations will arise when there is a difference of opinion or disagreement. This may typically be between children and their parents, or children and health professionals, or both. It is important to support and manage disagreements with care and according to rights-based principles, so as to enable the best decisions to be made, to protect the ongoing relationships that are often vital to children’s continuing health care, and to enable all parties to move forward beyond the current situation.

The role of health professionals to protect, facilitate and advocate for each child’s right to participate remains unchanged in any circumstance. However, that does not imply that health professionals should agree with or take sides in any disagreement, it is about ensuring that the child is supported to express their opinion, and to ensure that this opinion is considered properly and with due weight in accordance with their rights. Each situation brings its own challenges for health professionals to try to navigate in order to support each child to achieve this right to the greatest extent; whilst enabling the important supportive relationships between the child, parents, and health professionals to remain intact.

Situations of disagreement may test the willingness and skills of health professionals to promote children’s right to participate, who may also worry about damaging relationships with those in disagreement. But the protection of this right is a central duty of health professionals and the principles for meaningful participation referred to in section IIc can help.

Similarly, whilst health professionals have a duty to support and enable children’s rights to participation, they should not be expected to go beyond the laws of their own country. Therefore, it is important for health professionals to know the legal parameters in their country.  

Episodes where there may be different views, or where children may express disagreement with a proposed action, range across a wide spectrum of focus and severity. Scenarios where there may be different views and disagreement occur in all areas of health care:

Enabling open communication is often key to resolving issues. However, sometimes serious disagreements over what are the children’s best interests remain among parents, children and health care professionals, even after a collaborative decision-making process. It is part of the health professional’s role to mediate and help to restore positive relationships following this. 

  • Children, parents/legal representatives and health care professionals should be helped to clearly identify the values contributing to conflict and discuss the goals of the proposed treatment/research ; 
  • Early discussion around the expectations, limitations and uncertainties of treatment options and outcomes may help establish mutually agreeable treatment/research plans;
  • Cases should be discussed within multidisciplinary teams ;
  • Further discussions and/or referral for a second, independent medical opinion, should be promoted;
  • Consulting with and mediation support from a spiritual care leader, social worker, relevant peers, patient relations expert, bioethicist or a bioethics committee, or with institutional or personal legal counsel ; 
  • In very serious or complicated situations (when the child’s life is at risk or where a severe permanent injury can occur) a court can be asked to decide whether it is right to proceed with a particular treatment.