Chapter 58 Ethics, morality and consent in pediatric ophthalmology
In this chapter we give an international view of the issues. Since the interpretation of ethical issues has subtle but significant differences between cultures there must be a local interpretation of what we write. The common ethical issues are those concerning consent, confidentiality, and child protection. The guiding principles are that we should:
What differentiates ethical dilemmas in children is that, though our primary responsibility is to care for the child, it is the surrogates (the parents or carers) who are responsible for the child. Usually, this triangular interdependence works, but when parents’ wishes are at odds with our perception of the child’s needs or wishes, an ethical dilemma can become a legal one.
Patient empowerment and autonomy lie at the heart of informed consent. As a partner in the consent discussion, we must enable the parent to make a decision about care based on an understanding of the nature of the disease and intervention, including risks and benefits. Consent is a process, not an event or document; the consent form itself is merely a written record that the discussion has taken place. Assent, on the other hand, is a declaration of acceptance to undergo a medical diagnostic and/or treatment procedure. Even very young children should be asked to assent for medical procedures.
The legal position concerning parental responsibility and the capacity of a child to give consent varies from country to country and we need to be familiar with the laws governing consent where we practice. According to the ICD11 of the World Health Organization, the age of adultness is 18. In the USA, the differentiation of “minor” from “adult” is decided according to the each State’s law.1 On the other hand, in countries such as Australia, the age at which a person becomes an adult is 18. The Australian law recognizes that those who are under 18 may have the capacity to consent to their own medical management even without their parents’ knowledge, especially in sex-related issues.2 In some eastern countries, however, it is a preferred practice not to discuss the medical issues in the presence of the subject child.
Consent for treatment can be given by different people in different countries and different legal systems
In most countries, young people over 16 are assumed to have the capacity to consent, as are some mature children under 16. To assess if a young person under 16 has the capacity to consent, the doctor must ensure that the child is able to understand, retain, and weigh up the purpose and consequences of the procedure, as well as the consequences of not having the procedure. Although an adult with parental responsibility should be asked to give consent for a procedure on a younger child’s behalf, the child should be involved in the process and be given information in a manner appropriate to his/her age and stage of development.4
Procedures which involve any significant risk, and all research procedures, require written consent. Although it is always preferable for informed consent to be sought by the surgeon performing the procedure, the process may be delegated to a trainee or nurse as long as that person is suitably trained and has sufficient knowledge to enable them to give a full explanation of the risks and benefits of the procedure.5 Ultimately, however, it is the operating surgeon who must accept such responsibility for a surgical procedure. Information leaflets and procedure-specific consent forms are helpful to back up