1 Introduction

Good health and living conditions enable people to achieve their full potential and are fundamental for the development of every human being. This is especially true for children, given their rapid physical, cognitive, and other evolving capacities. The enjoyment of the highest attainable standard of health (the right to health) is a core human right recognized in numerous international instruments, for example in Article 12 in the UN Convention on Economic, Social and Cultural Rights (cescr). Specifically, children’s right to health is enshrined in Article 24 of the UN Convention on the Rights of the Child (crc), which addresses states’ responsibilities in ensuring all children their right to health, including access to quality healthcare services.

The realization of the right to health can be pursued through a number of approaches; these include establishment of methods to develop adequate healthcare that is safe, scientifically and medically appropriate, of good quality, and respectful of medical ethics. Biomedical research, epidemiological studies, and healthcare research have all contributed to healthcare advancements that benefit children in various ways, enabling children with rare diseases, chronic diseases, and disabilities to live healthier, longer, and more active lives. Nevertheless, new and innovative interventions designed for children can also cause or contribute to adverse health consequences and create negative outcomes in terms of their fundamental rights.

The aim of this chapter is to analyse children’s right to health, with particular focus on the right to access quality care in light of medical advances and developments in paediatrics.¹ The realization of a child’s right to health includes the wide range of rights and freedoms that are determinate to children’s health, such as the rights to non-discrimination, right to life, survival and development, and right to be heard and to participate. Because children rely on adults for their growth and development, they have historically been treated as passive beings requiring parents to provide appropriate direction and guidance. The question that remains however is in what way this may undermine the ability of the child to exercise his or her rights in different settings, such as when it comes to participation and decisions-making in health related matters. Ensuring the right to health for children requires a general understanding of the health risks children face; these risks often vary at different stages of development. These developmental phases can also affect the way children understand and recognize their rights, as well as their abilities to exercise them. The chapter therefore starts with a description of children’s possibilities to exercise their rights in relation to different phases of their development.

2 Exercise of Rights in Relation to Different Stages of Childhood Development

The crc requires states to respect and recognize all children as persons in their own right and to treat them as independent right holders – from early childhood to adolescence. However, the exercise of children’s rights is a complex process that depends on the child’s evolving capacity. For example, children are not always considered to be competent to consent to or refuse medical care. Instead, the child’s parents or legal guardians will act on the child’s behalf in order to safeguard the child’s interests. It would therefore be more accurate to describe the realization of children’s rights as a process in which children exercise their rights through support and assistance from others (often parents).² This process varies relative to the age and maturity of the child, in terms of development phases during childhood. An understanding of the complexities of child development can shed light on some of the challenges involved in realizing children’s rights in healthcare.

Early childhood is defined differently depending on the context, but on an international human rights level, early childhood is described as the period from birth to the age of 8 years.³ In practice, this covers the time throughout infancy, the preschool years, and the transition to school. Early childhood is generally characterized as a period of rapid growth and development, including increasing mobility, communication skills, intellectual capacities, and emotional and cultural skills. The earliest years of a child’s life are also regarded as the foundation for good physical and mental health throughout life. The UN Committee on the Rights of the Child has described early childhood as a critical period for realizing children’s rights. The health of young children is at particular risk from (among other things) malnutrition, disease, poverty, and neglect.⁴ The Committee has highlighted that young children have special requirements regarding physical nurturance, emotional care, and sensitive guidance, as well sufficient time and space for social play, exploration, and learning.⁵ Thus, proper intervention strategies during early childhood have the potential for significant positive effects on young children’s current health and future health prospects.

The period between childhood and adulthood (from age 10 to 19), also known as adolescence, is another important time for laying the foundations of good health.⁶ Although young adolescents aged 10–14 years have the lowest risk of death of all age groups, half of all mental health disorders in adulthood start by age 14, and suicide is one of the three leading causes of death among adolescents.⁷ The who Report on Global Standards for Quality HealthCare Services for Adolescents states that mental health problems are often neglected among youth, even though these problems are the main cause of illness and disabilities among adolescents.⁸ In addition to the significant burden of neuropsychiatric disorders, other phenomena such as violence, accidents, and infectious disease constitute risks for adolescent health.

The Committee on the Rights of the Child has raised concerns that States parties have not given sufficient attention to the specific challenges involving children (both young children and adolescents) as rights holders and the promotion of child health and development.⁹ One challenge in the realization of children’s rights in healthcare – particularly during adolescence – is to involve children in decision-making processes about their health.¹⁰ This is a requirement enshrined in Article 12 of the Convention.¹¹ It gives children the chance to express their views freely and to have those views taken into account in accordance with their age and level of maturity. In addition, the Committee has highlighted the need for states to consider allowing children to consent to certain medical treatments and interventions without the permission of a parent,¹² thus indicating children’s status as independent right holders.

When age thresholds such as evidence of sufficient maturity and mental capacity are used as requirements for the child’s right to participation in matters such as healthcare, adolescents may find their maturity tested and cognitive development questioned by medical personnel.¹³ This may result in a lack of respect for the child’s abilities to participate actively in the promotion of their own health.¹⁴ Consequently, respect for children’s views may be overlooked or rejected on the grounds of insufficient age and immaturity.¹⁵ This may result from the idea and presumption that young people lack certain capacities or abilities – such as cognitive capacity and psychosocial maturity – that are necessary for decision-making. As elaborated in Chapter 6 of this volume, regarding the theory of childism, these assumptions regarding children are seemingly based on a preconceived notion: children lack certain abilities and therefore are inferior to adults.¹⁶ It can also be the result of viewing children as ‘future adults’, making it morally acceptable to treat children differently from adults.¹⁷ These seemingly paternalistic values¹⁸ can even be detected in the science regarding the cognitive and psychosocial development of children. Primary evidentiary support in the medical literature presents the claim that most minors are not mature enough to make serious medical decisions.¹⁹ This is often drawn from neuroscientific and psychological studies, which show that individuals under age 21 tend to downplay long-term consequences, and that humans do not acquire psychosocial maturity before the age of 20. These studies, however, are rarely based on clinical analysis of children’s consent in a healthcare context, where cognitive capacity might vary depending on individual features, diagnoses, and treatments.²⁰

The natural variation in children’s development always needs to be taken into consideration when assessing their capacity. The development of children’s cognitive capacities as well as their psychosocial maturity may vary according to their individual nature, as well as their gender, living conditions, family organization, care, etc. It is therefore important to emphasize that children are subject to developmental differences and vulnerabilities at different phases of life. While a young child generally requires more parental guidance and support than an older child, it is important to consider individual variations in the capacities of children of the same age, along with their methods for making choices and communicating their wishes and desires. Therefore, understanding children’s different developmental phases and the diversities that exist among children is essential to safeguarding children’s exercise of rights as their capacity develops.

3 Children’s Right to the Highest Attainable Standard of Health

4 Advances in Paediatric Care – Benefits and/or Harm?

As indicated earlier in this chapter, the right to health includes a legal obligation on the state to make medical treatment and care available in order to meet children’s special health needs. Children’s health needs are often, but not always, handled in a paediatric setting that is focused on medical science related to the children’s physical, mental, and social health from birth to adolescence. Paediatric care also embraces proper health prevention and intervention strategies during early childhood that can improve the physical health of infants and children. States’ obligation to ensure children’s right to health therefore includes preventive measures that may have a positive impact on children’s wellbeing and future health prospects. This aspect includes making new technologies and medication available in paediatric care in ways that can make healthcare more efficient and improve the health and lives of children. Accordingly, the Committee on the Right of the Child has stressed that development of technology, medications, equipment, interventions, and processes can contribute to significant advances in children’s health in different areas.²⁷ An essential part of paediatric care is therefore the application of new and advanced technologies, including medication, equipment, and interventions that can improve the care. However, applying these interventions in paediatric care can be considered beneficial only when they are effective and safe; this caveat relates to the abovementioned quality assurance dimension as a key component of the right to health.²⁸

One of the problems generated by the use of innovations in paediatric medicine is that unknown variables can create adverse outcomes for children. As an example, medical intervention in the earliest stages of children’s lives, such as in neonatology (care for new-borns), sometimes lacks information about mid- or long-term effects on children’s health.²⁹ Despite the many advancements in neonatal medicine, the long-term risks of care interventions for premature infants – such as risks for future mental health problems – are poorly understood. There are also examples of interventions that have been shown to have adverse effects, but that are still in use, such as antibiotic treatment in the neonatal period that can impair growth during the first six years of life.³⁰ Such risks exist for older children and adolescents as well, such as the development of various medications for mental-health and behavioural problems. One example concerns the use of pharmacological interventions for children with adhd (Attention-Deficit/Hyperactivity Disorder). adhd is classified as one of the most common mental-health problems among children, and the use of stimulant medications prescribed for adhd has grown significantly in recent years.³¹ Side effects and risks include cardiovascular risks, decreased appetite, insomnia, headache, dizziness, and mood changes including anxiety and depression.³² There is also lack of evidence regarding long-term benefits of these stimulant medications. Likewise, questions have been raised concerning the use of so-called ‘smart pills’ for children in order to increase their cognitive ability; the immediate and long-term risks for these medications remain unknown.³³

Scientific advances and risk-laden practices in paediatric care are many, and the examples here are but a few illustrations of problems generated by these advances and innovative therapies. These challenges give rise to central and still unresolved questions as to whether the usage of scientific advancements and developments that aim to improve children’s health and lives can in fact jeopardize children’s right to health, particularly when scientific efficacy and safety aspects are not fully validated.³⁴

Nevertheless, children should benefit from the use of new technologies that can improve their health and or save their lives. In this regard, why should children be treated less favourably than adults? This reconnects to theories of justice as addressed in Chapter 8 of this volume. The European Commission, for example, has stressed that approvals of paediatric drugs are often delayed when compared to adult medications, and that there is a great demand for child-specific treatments for diseases that affect only children or that manifest differently in adults and children.³⁵ Consequently, withholding children from the opportunities to undergo innovative therapies and medical interventions can in fact lead to injustice and unequal access to medicine and the benefits of scientific progress as compared to adults, which in turn can constitute a breach of children’s right to health without discrimination.

5 Conclusions

As with all care, it is not always possible to predict all the consequences and side effects of a treatment. Nevertheless, some of the interventions in use in paediatric settings can have both ethical and legal implications and affect children’s right to health in serious ways. The most pressing concern regarding these advances in relation to the child’s right to health is the lack of sufficient scientific support regarding treatment safety and efficacy. Given the states’ obligations to promote the health of children and protect them from harm, it is clear that harmful practices should not be tolerated. A prerequisite for states to fulfil children’s right to health is first and foremost to ensure access to good health care. But what if standard care in a particular situation concerning critically ill children is not enough to cure or save a child’s life, and the only alternative is to use innovative therapy with unproven effectiveness and unknown adverse effects?

The truth is that risks are involved in using innovative therapies in paediatric practice, and it is likely that such risks will always exist to some degree. Some innovations have even been proven to cause direct harm to children.³⁶ Still, this uncertainty should not stand in the way of children receiving potentially life-saving innovative treatments. The challenges that advancements in the area of paediatrics pose to children’s right to health are complex and require a nuanced discourse about the validity of such practices. On the one hand, these innovations can be used to improve health and survival for many critical paediatric diseases, but on the other hand they may be harmful and pose risks to children’s health and wellbeing, especially when these methods lack sufficient scientific support. It should be clear by now that while these technologies potentially enable different ways to improve children’s health and save their lives, they also introduce challenges in relation to the child’s right to health, and more specifically, children’s right to access quality care that is safe and effective.

A careful approach, but not a barrier, therefore, is recommended in the introduction of all new technologies in paediatric care. In this regard it is essential that caregivers, healthcare personnel, and parents safeguard the child’s rights to participate in these healthcare decisions.³⁷ Medical paternalism towards children is widely justified based on children having insufficient capacities to make appropriate choices. However, in situations where children are the subject of treatments that may be invasive, lacking in scientific support, or used in practice without confirmation through long-term data, the child’s views and interests should be given due weight. In these cases, children may have first-hand experience of the treatment and may be in a better position to know whether they want to continue the therapy, particularly if the illness recurs. The paternalistic presumption in paediatric care – which holds that parents and physicians are better positioned to determine treatment options for a child – is not always justified. Children with critical illnesses and a shorter life expectancy may have more relevant experience regarding their own conditions and may have very mature views of their own lives, thus justifying their right to make their own decisions regarding their care.³⁸ In the end, paternalistic management should always be kept to a minimum, so that children can express their views and participate in their own development wherever and whenever possible.