Using a rights-based approach to improve the healthcare of children with neurosurgical diseases—Presidential address for the 49th Annual Meeting of the ISPN, Vina del Mar, Chile

Introduction

The mission of the ISPN is to improve the health and welfare of children requiring neurosurgical care throughout the world by scientific research and close international cooperation irrespective of class, color, creed, or economic condition. As pediatric neurosurgeons, we care about the health of the children we look after, and we want to provide them with the best possible care available. Yet, many of us have faced difficulties and frustrations in trying to provide the best possible care for some of our patients; for example, a child with hydrocephalus who needs a shunt, but the parents cannot afford to pay for a shunt or the cost of surgery. Or a 1-day-old baby with a myelomeningocele who has to wait till she is 14 days old before any surgery can be done because there is no insurance cover till then. Or the hospital does not have a neuroendoscope to perform endoscopic third ventriculostomy in a hydrocephalic child with clear indications. We would like to have newer technologies like MRIs, neuro-navigation, higher-end operating microscopes, or even a high-speed drill and craniotome, but these are not available because the hospital cannot afford to buy one. Yet these are basic technologies in pediatric neurosurgical units in most developed countries. Another barrier to providing care is that in many countries (both developed and underdeveloped), children with congenital diseases are denied health insurance cover.

The United Nations inform us that the leading causes of death in children under 5 years of age globally are infectious diseases (including pneumonia, diarrhea, and malaria) and malnutrition, while those among older children, adolescents and youth, are injury, including road traffic accidents and drowning, interpersonal violence and self-harm, and poor mental health [1]. To reduce the death rate, preventive measures such as vaccination, nutritional supplement, sanitation, adoption of safe hygiene practices, and improving mental health are mandatory. In 2022 alone, millions of children have also suffered the consequences of floods, storms, and droughts linked to climate change, and struggled to access essential services amidst violent conflict, and they continued to be impacted socio-economically by the COVID-19 pandemic [2]. The impacts of neurosurgical diseases, compared to what has been mentioned, are largely insignificant. Death and disability from neurosurgical diseases make up a very small percentage compared to these “basic” diseases. And when governments implement these basic healthcare measures, the resources needed to treat children with neurosurgical diseases are not given priority. Pediatric neurosurgery is left behind, either because of national healthcare budget constraints, especially in low or low-middle countries, or because priority is given to more targeted groups such as the aging population, as was seen in developed countries [3].

Neurosurgery is often considered a high-cost tertiary specialty, and many neurosurgical patients end up with severe disabilities, even with the best treatment, or so it would seem. But we all know this is not always true. There are neurosurgical diseases that are curable, as in the case of a child with a posterior cranial fossa pilocytic astrocytoma, and many children do achieve a good quality of life outcomes following neurosurgical treatment. Nevertheless, a country’s socio-economic and cultural status and its healthcare priorities trump the pediatric neurosurgeons’ concerns. So how can we, as pediatric neurosurgeons, advocate for better care for children with neurosurgical diseases, when children cannot afford the care or we do not have the proper resources or both?

On this note, I must congratulate Kamel Ghotme, Chair of the ISPN’s Advocacy Committee, Adrian Caceres and Jeff Blount, and many other colleagues, working together with GAPSBiF, the G4 Alliance, and many other organizations who were involved in getting Resolution 76.19—“Accelerating efforts for preventing micronutrient deficiencies and their consequences, including spina bifida and other neural tube defects, through safe and effective food fortification”—to the World Health Assembly. Due to their hard work and dogged persistence, this Resolution was passed on 30 May 2023. A lot of work, time, and passion have been put into getting this resolution passed. Moving forward, folate fortification will be implemented in countries across the world, and this will reduce the incidence of open spina bifida in these countries by up to 70%. What their success shows is that we need to engage the correct and relevant stakeholders and policymakers, in this case, the World Health Organization, the apex organization that engages and regulates governments across the world to provide essential healthcare and to do what is right for our patients.

I would like to suggest a similar way to engage with governments, policymakers, and stakeholders to improve pediatric neurosurgical care for our patients—and that is to use a rights-based approach based on the United Nations Convention of the Rights of the Child.

The United Nations Convention on the Rights of the Child (UNCRC)

The UNCRC is an international treaty, adopted by the General Assembly of the United Nations in November 1989. It is a universally agreed set of non-negotiable basic human rights standards and obligations to be respected by governments which recognizes and proclaims the rights of children (defined as less than 18 years of age). The United Nations Convention on the Rights of the Child is the first legally binding international instrument to incorporate the full range of human rights—civil, cultural, economic, political, and social rights. These rights are set out in 54 articles and two Optional Protocol [4]. It spells out that children everywhere have the right to survival; to develop to the fullest; to protection from harmful influences, abuse, and exploitation; and to participate fully in family, cultural, and social life. The four core principles of the Convention are non-discrimination, devotion to the best interests of the child, the right to life, survival, and development, and respect for the views of the child. Every right spelled out in the Convention is inherent to the human dignity and harmonious development of every child.

Specifically with respect to health and healthcare, there are numerous articles in the UNCRC that promote the right to health. Firstly, all children have the “inherent right to life” (Article 6). Consequently, State Parties (i.e., governments) are obligated to ensure that the survival and development of the child are maximized to the fullest extent possible. Additionally, all children have the right to “the enjoyment of the highest attainable standard of health” and should have access to facilities for treatment and rehabilitation (Article 24). Should a child become the victim of a certain situation such as neglect, abuse, and torture as described in Article 39, the state is obliged to ensure the recovery and reintegration of that child. The UNCRC also recognizes the important relation between health and education and access to information as set out in Articles 17 and 24.2(e)(f). Hence, the Convention protects children’s rights by setting standards in healthcare, education, and legal, civil, and social services.

Since its adoption in November 1989, 196 countries have signed up to the UNCRC, with only one country still to ratify the Convention [5]. When a state ratifies the UNCRC, it is bound by international law to implement the Convention and has to take action to ensure the realization of all rights in the Convention for all children under their jurisdiction [6]. They are required under Article 4 of the Convention to take “all appropriate, legislative, administrative, and other measures” for implementation of the rights contained therein. In reality, the actual implementation, the actualization of these rights, requires the engagement of all sectors of society, including the children themselves. The Committee on the Rights of the Child, established under the UNCRC, oversees its implementation. The Committee has identified a wide range of measures that are needed for effective implementation, including the development of special structures and monitoring, training, and other activities in all levels of Government so that these rights are understood by all concerned and translated into reality.

Many people do not even know that these rights exist. Certainly, many doctors looking after the health of children are not aware of these rights and hence do not realize that it is possible to use a rights-based approach to argue for the rights of their patients. Not only should we be aware of its principles and philosophy, everyone working with children has obligations to promote the rights in the Convention [7].

Aligning availability of pediatric neurosurgical care to the principles of the UNCRC

Here are some examples of how the principles of the UNCRC can be used to ensure pediatric neurosurgical care is made available to children who needs it:

• (I) Right to non-discrimination (Article 2): access to pediatric neurosurgical care should adhere to the principle of non-discrimination. This means that governments and healthcare providers must ensure that all children, regardless of their race, ethnicity, gender, religion, disability, or other status, must receive equal access to neurosurgical interventions, specialized care, and support services. Importantly, efforts are made to address disparities and promote equitable care for all children. A child born with a congenital disease should not be discriminated against. After all, that child did not ask to be born. Hence, if parents can afford to buy health insurance cover for their children, the child should not be denied or have exclusion causes in their health insurance plans just because he/she was born with a congenital disease. Even if that child does not have insurance cover, he/she should receive the appropriate treatment.

  Prior to 2013, children born with a congenital disease in Singapore were not eligible to receive health insurance coverage provided by MediShield, Singapore’s national basic health insurance [8]. These children were still eligible for subsidized care (as are all Singapore citizens), but their parents had to pay the full cost of the subsidized hospital bill because they did not have insurance cover. After many appeals over many years to the government and policy makers, the rules were changed in 2013, an improved version, MediShield Life came into being and since then, children born with congenital diseases (or pre-existing disease) are covered by Singapore’s MediShield Life basic health insurance, although they are still not covered by the MediShield enhanced insurance plans provided by private insurance companies. There were several reasons for this improved version, and one assumption would be that a national health insurance program owned by the government has an obligation not to discriminate children born with congenital diseases.

• (II) Right to survival and development (Article 6): the child’s right to survival and development can be achieved by providing timely and appropriate interventions for children with neurosurgical conditions, which includes addressing life-threatening conditions such as brain tumors, hydrocephalus, or traumatic brain injuries, and ensuring comprehensive care to support the child’s physical, cognitive, and emotional development. This means that children with life-threatening emergencies should not be turned away from getting emergency healthcare, even if the parents cannot afford to pay for their care.

• (III) Right to the highest attainable standard of health (Article 24): we should aim to fulfil the child’s right to the highest attainable standard of pediatric neurosurgical care. This will include the development and access to specialized neurosurgical services, including preoperative assessments, surgeries, postoperative care, rehabilitation, and long-term follow-up, regardless of a child’s background or circumstances. Children needing neurosurgical implants such as shunts should not be denied the surgery simply because parents cannot afford the implant. There are always cheaper alternatives, without bells and whistles, which will work just as well.

  Article 24 (4) also obligates states to promote and encourage international cooperation to improve their standard of children’s health. Individual states have to work out collaborations with other states that are better off, to help them fulfil their obligations to their children. This is an area where international organizations like the ISPN can help out. The ISPN, as part of its mission, has been holding pediatric neurosurgery courses in many developing countries in the world, providing an overview of the state-of-art in pediatric neurosurgery and thereby informing doctors attending these courses about the modern-day management of neurosurgical illnesses in children and the expected outcome. By doing so, the ISPN helps to improve the standard of pediatric neurosurgery care around the world and helps pediatric neurosurgeons in these countries to attain the highest standard of care possible for their patients.

Principles to consider when implementing a rights-based approach [9]

Bearing in mind how these direct applications of the UNCRC can be used, it should be noted that when implementing a rights-based approach to the child’s health, there are three guiding principles, identified by UNICEF, that should be considered [10]. The first guiding principle is the interdependence and indivisibility of rights, a concept adopted at the World Conference on Human Rights in 1993, implying that rights granted to children are interdependent on one another and cannot be divorced from each other [11]. It means that the realization of the right to health, for instance, cannot be separated from the realization of other rights to which the child is entitled to. For instance, in order to achieve a basic level of healthcare, other rights such as access to potable drinking water, adequate sanitation, adequate nutrition, and safe housing must also be available for the realization of that right [12]. The second guiding principle is the accountability of state parties when ratifying international law, and the third principle is about the universality of rights. Children are endowed with these same rights expressed in Article 1 of the Universal Declaration of Human Rights, which states that “all human beings are born free and equal in dignity and rights” [13]. These rights cannot be derogated and are applied irrespective of the current circumstances (for example, economic crisis, armed conflict, or national emergency) that a state is in. The principle of universality considers the individual rights of the individual child and not the rights of children as a class.

Pediatric neurosurgeons intending on advocating a rights-based approach to the health of their patients also need to understand the four general principles of children’s rights highlighted by the Committee on the Rights of the Child, in its General Comments No 5 [14]. These four principles are (i) non-discrimination,( ii) the best interest of the child, (iii) the right to survival and development, and (iv) the right to participation.

• (I) Non-discrimination

  Non-discrimination is highlighted in Article 2 of UNCRC and applies to race, color, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth, or other status. States are to take all appropriate measures to ensure that the child is protected against all forms of discrimination.

• (II) Best interest of the child

  Under Article 3 (1) of UNCRC, the best interest of the child must be a primary consideration in all actions concerning children. This is an over-arching principle of the UNCRC which requires an overall understanding of the cause and effects of an action or actions being contemplated. Pediatric neurosurgeons should be familiar with the concept of the best interest of the child since they often have to grapple with this principle in clinical practice or when they have to go to court on behalf of a child. Should they operate on a child with a recurrent malignant brain tumor, knowing that the surgery is likely to be futile, perhaps allowing the child to survive another 1–2 months but with serious disabilities or should they not operate and allow the child to die with dignity? The pediatric neurosurgeon, in deciding whether to operate or not to operate, will need to consider whether his/her action is in the best interest of the child.

• (III) Survival and development

  In Article 6 (2) of the UNCRC, “development” should be seen in its broadest sense as a holistic concept, embracing the child’s physical, mental spiritual, moral, psychological, and social development. The pediatric neurosurgeon again will be familiar with this concept as this is the principle involved in the early intervention programs designed for children with physical and/or mental disabilities, a common subset of pediatric neurosurgical patients. The majority of children with severe neurosurgical diseases will need rehabilitation services to help them develop physically and mentally so that they can return to normal or almost near-normal existence.

• (IV) Participation

  Article 12 of the UNCRC recognizes the child as a full human being with integrity and personality and with the ability to participate fully in society. This principle gives children a voice. Participation may not be very important in very young neurosurgical patients. However, pediatric neurosurgeons should consider allowing older children who are mentally capable, to have a say in their medical treatment, even if this goes against the wishes of their parents.

Problems when using a rights-based approach

The rights-based approach is a powerful tool in the context of children’s health and when correctly prescribed, after taking into consideration the guiding and general principles, empowers pediatric neurosurgeons to approach governments, policymakers, and stakeholders to ensure that a high standard of pediatric neurosurgical care is made available to the children they look after. However, the rights-based approach is not without problems or its detractors.

Under Article 24, states are obligated under Article 24 to recognize the right of the child to the “enjoyment of the highest attainable standard of health.” However, Article 24 mainly emphasizes the aspects of primary or basic healthcare (Article 24, 2 (b)), the need to diminish infant and child mortality (Article 24, 2 (a)), and to combat disease and malnutrition within the framework of primary healthcare. It can be difficult to define what is the highest attainable standard of health for each country, because the standard of healthcare across the world is a spectrum, with the well-to-do able countries being able to afford tertiary and quaternary healthcare through private hospitals or citizens going abroad for healthcare while the poor do not have access even to the clean potable water mandated under Article 24, 1.

However, in today’s connected world, access to evidence-based medicine and clinical guidelines is easily available, and which can help define what can be the highest attainable standard of care. At the same time, we need to bear in mind that Article 24 (4) informs that the needs of developing countries have to be taken into account with regard to what the highest attainable standard of health is. Hence, developing states may raise the issue of lack of resources to justify the low standard of children’s health in their countries. But it should be noted however, that Article 24 (4) also obligates states to promote and encourage international cooperation to improve their standard of children’s health. Individual states have to work out collaborations with other states that are better off, to help them fulfil their obligations to their children.

There are also detractors who criticize the concept of children’s rights in the UNCRC in general. Critics have argued that the experience and perceptions of childhood vary fundamentally in different countries but that the UNCRC assumes a model of childhood that is universally applicable “based on the notion that children everywhere have the same basic needs and that these can be met with the same standard set of responses” [15, 16]. They argue that the UNCRC is basically the universalization of western childhood, as the standards of the UNCRC are based on a western concept of childhood and western social policies which emphasize the individual instead of the influence of the wider social, economic, political, and cultural circumstances.

While this argument might be true in the context of some of the related cultural issues in the UNCRC, in the context of health, this argument fails. Children and their parents suffer when they fall sick, no matter where they are in the world. To quote the late Anthony J Raimondi, a pioneer pediatric neurosurgeon and one of the ISPN’s founders, “… we always were foresquare in front of the reality that sick children are sick children everywhere in the world, that their parents suffer equally irrespective of the gravity of their illness…” [17]. Here, Professor Raimondi was talking about his many students who came from very different national origins with one ultimate goal—to learn the art of pediatric neurosurgery from him so that they would be able to treat the sick children in their own countries when they return home. While there may be local variations, diseases do not discriminate. When it comes to health, sick children will be sick children everywhere and anywhere in the world.

Pediatric neurosurgeons as advocates for children and the development of the medico-legal partnership in promoting children’s right to health

It becomes understandable that pediatric neurosurgeons looking after children will inevitably and ultimately act as advocates for them. Advocacy for one’s own patients is not a new idea—it is entrenched in the Hippocratic Oath and the Declaration of Helsinki [18]. However, advocacy in the arenas regarding children’s right to health is often limited by the doctor’s lack of knowledge and experience with the law, and the lack of resources to intervene. Those of us looking after children recognize that social and non-medical factors influence child health holistically and that there are government programs implemented to provide for children’s basic needs. These programs are obligatory in countries where the UNCRC is incorporated into domestic laws. However, gaps in implementation can and do result in denials of services, which lead to preventable poor health outcomes for the disabled children who are in need of such services. As the primary physician looking after such children, the pediatric neurosurgeon’s role in these arenas is often limited and he/she often has to depend on medical social workers and case managers, whose roles are to find the appropriate resources for the affected child and their families. However, even social workers and case managers are helpless when gaps in the implementation of public health care programs occur.

One approach that has been advocated and shown to be successful is to introduce lawyers into the healthcare team to deal with these issues [19]. Lawyers can provide the needed legal services to vulnerable families since they are trained to identify violations of rights and to take the appropriate legal steps to hold public and private agencies accountable on behalf of families. Lawyers can help enhance a culture of advocacy in our work where sick children can suffer significant disabilities, by providing direct legal assistance and jointly addressing the socio-legal issues affecting children and families together with the pediatric neurosurgeon.

The incorporation of lawyers into the clinical setting, leading to the formation of the medico-legal partnership, originated in the USA and has become so successful that it has being replicated at more than 200 sites across the country [19, 20]. Introducing lawyers into medical practice has successfully enabled cancer patients in the USA to get the resources they need (new drugs and financial resources) to treat their cancers [21]. It has also been successfully pioneered in the UK in an intensive care setting to address the legal needs of patients with acute, critical illness including major trauma [22]. There is no reason why it cannot be done in countries which ratify the UNCRC.

The medico-legal partnership is not just about advocating for children’s right to health. Lawyers understand the power and violence of the law [23]. Their role and responsibility are to ensure that the law is not simply a tool of the powerful, to be used to keep people out, to keep them down, or render them submissive. The law is more than a set of rules and prohibitions; the law is about justice. With lawyers working hand in hand with doctors and using the UNCRC as its framework for children’s right to the highest attainable standard of health, the sum is a powerful and unstoppable weapon of advocacy.

Conclusion

The United Nations Convention on the Rights of the Child (UNCRC) is the ideal rights-based framework to use to improve the care of neurosurgical diseases in children. Its articles grant children a multitude of rights which can be used to improve the treatment and care of children with neurosurgical disease. Interventions using the rights-based approach the disease treatment continuum that begins with ways to prevent the disease from occurring and ends with supportive non-discrimination interventions in terms of access to schools, playgrounds, wheelchairs, support for special schools, rehabilitation facilities as well as recreational facilities.

The rights-based approach is much more holistic, relating to children as people with their own rights and viewing disease and ill-health in the context of the environmental and social threats to them. The rights-based approach helps pediatric neurosurgeons become advocates of children and their rights and opens up avenues for the fulfilment of these rights. The rights-based approach offers legal solutions to situations where there is a denial of services in spite of State Parties’ obligations to provide these services as rights. By incorporating lawyers into the medical team to form a medico-legal partnership, the UNCRC can become a powerful instrument that pediatric neurosurgeons everywhere can use to improve the care and needs of children with neurosurgical diseases.