By Luciano Bottini Filho
Despite the value of a constitutionally enshrined right to health, such a guarantee, on its own, does not ensure patient rights or a nuanced understanding of patient-centered care.
This article will consider the case study of Brazil as an example. Despite Brazil’s recognition of the right to health, this constitutional protection does not set sufficient standards to guide judicial decision-making around patient care.
The right to health has existed in Brazil for over 30 years, and has been important for the establishment of family health programs, as well as other local health policies. There is growing evidence from across the world that a constitutional right to health can contribute to the progress of health systems.
However, having a right to health may be insufficient, on its own, to enforce adequate regulations and ethical principles to develop a health system which respects patient autonomy and their individual values and preferences. Health systems should also be built upon a basic set of guidelines and principles, made through legislation or legally enforceable guidance documents, that ensure ethical doctor and patient relationships in medical decision-making and treatment. This subset of procedural guarantees to protect individual autonomy has been called patients’ rights, which may be upheld even without a constitutional right to health.
Both England and Wales (which do not have a constitutional right to health) have been very advanced in producing a patient-centered framework across policies and institutions. The Parliament and consultive bodies have been a fertile ground for advanced discussions around mental capacity and the law. These conversations are supported by rigorous academic studies, and yield continuously updated and revised legislation to ensure the best standards of care. Conversely, if we compare the minimum procedural safeguards for compulsory treatment in Brazil, the English system appears to be much more compatible with international standards today.
In other words, countries like Brazil, despite having a right to health, may be behind in ethical frameworks and medical legislation. A plausible explanation for these contrasting scenarios centers on the role that experts in medical law and health care regulation play in establishing a functioning and ethically-grounded health system. An active bioethics and medical law community is needed to influence the interpretation of the law in Courts to set standards that complement the right to health.
Despite its longstanding constitutional right to health, Brazil has a relatively timid epistemic community to advocate suitable laws and principles for individual patient rights. The State has never staged nationwide public debates followed by the creation of specific frameworks to address patient autonomy and informed consent. Medical law is virtually nonexistent in the curriculum of law schools, and only in recent years have some academics published works in this area of bioethics and law.
Additionally, the patient-doctor relationship in Brazil has never reached the courts as a legal problem with the same refinement as in the UK, where questions of candor and patient autonomy have experienced a thorough review. The Brazilian Supreme Court has handed down no decision that enables a dialogue around the competing interests of patients and doctors, and has been much focused on the provision of care. In one instance, Justice Carmen Lucia even lauded the fact that patients are entitled to receive compulsory treatment from the State by virtue of their right to health.
Does this mean that the right to health in some way has a negative effect on patients’ rights? Not really. The right to health simply may be more instrumental to directly fostering State obligations to build and strengthen health systems, including mental health services, but not as oriented toward regulating individual freedoms and capacity to decide what is appropriate care from a patient perspective.
To create a patient-centered, ethically-grounded health system, it may be necessary to introduce more focused legal frameworks. Consider the Convention on the Rights of Persons with Disabilities, for example, which raises questions of consent and patient choice through other means than a right to health. The CRPD process of drafting, and the subsequent comments, combatted against medical abuse, lack of proper patient support in determining options of treatment, and involuntary care. This suggests that, even in international law, the right to health cannot be a perfect starting point to hold conversations on the interplay of bioethics and human rights — which may be developed more vigorously among an epistemic community with full expertise, such as the one involved with the CRPD. Advocates and patients with disabilities have brought a wealth of arguments, views, and experiences to the table in interpreting the right to health. Such input may be simply unheard of in jurisdictions where the right to health is recognized but advocates and researchers have never exercised influence.
Still, the right to health is a great starting point to reimagine the provision of services and the resources needed to ensure a functioning health system — without it, mental health programs would not be able to offer any alternative treatment imperative to ensure patient choice. But, simultaneously, more efforts may be needed to identify the right ethical vocabulary in policymaking (disseminated across a regional legal culture), rather than simply accepting the existence of the right to health.