In recent years, it has become common and socially acceptable to hear that “the patient has the right to choose their treatment”, that “everyone knows what’s best for them”, or that “the final decision is always the patient’s.” This seemingly liberating and democratic discourse works very well in an era of growing distrust in institutions and a valorisation of individuality. However, behind this rhetoric lies a dangerous distortion of the concept of patient autonomy, which has been exploited by anti-vaccine movements, promoters of pseudotherapy, and denialists.
The confusion is not accidental. It stems from a lack of understanding of what autonomy in healthcare truly means and how it should be exercised within a system that values evidence-based practice and patient wellbeing. To understand this conceptual trap, we need to distinguish between two very different types of autonomy: formal autonomy and substantial autonomy.
The difference
Formal autonomy is a relatively simple concept: it’s the legal and ethical right we have to make our own decisions, including in healthcare. It’s an important historical achievement, the result of decades of fighting against various forms of authoritarianism, including medical authoritarianism, and is an unquestionable pillar of the modern therapeutic relationship.
Substantial autonomy, on the other hand, is much more complex. It’s not limited to the right to choose, but rather the effective ability to make informed, deliberate choices aligned with one’s values and life goals, based on a clear understanding of the situation. This means genuinely understanding the available options, their risks and benefits, the evidence supporting them, and the consequences of each alternative.
A person may have full formal autonomy – such as the right to refuse a vaccine – without having substantial autonomy, if their decision was based on false information, irrational fears, or a distorted understanding of the risks involved.
Take my driver’s licence as an example: while I regularly drive my car, I have a dual license, which means I have the formal autonomy to decide to ride a motorcycle at any time. But, substantially, it would be risky (for me and others) to do so without further training, since I have not touched a motorcycle since I took the practical test in 2007. The right to do something does not automatically imply the ability to do it safely or beneficially.
Anti-vaccine movements and advocates of alternative therapies discovered some time ago that invoking “patient autonomy” is a powerful rhetorical strategy. By framing dangerous or unscientific decisions as ‘exercising individual freedom’, they can shift the focus from (absent) scientific evidence to issues of personal rights. “You have the right to choose”, they say, transforming a decision that should be based on the best available evidence (and informed dialogue with qualified professionals) into an ideological issue of freedom versus oppression.
This strategy is effective because it leverages two psychological tendencies: a natural aversion to explicit paternalism and a tendency to overestimate one’s ability to evaluate complex information, especially in areas where one lacks expertise. “You know what’s best for you” sounds empowering and respectful. But in practice, it can be a subtle way of abandoning a patient to their own devices amidst an ocean of misinformation.
The problem is compounded when the rhetoric of autonomy is used to legitimise the refusal of interventions with clear and well-documented benefits, or the acceptance of interventions of dubious benefit, proven ineffective, or even dangerous.
Uninformed choice
Here we arrive at an important paradox: defending formal autonomy without guaranteeing the conditions for substantive autonomy can actually undermine true freedom of choice. A person who decides not to vaccinate their child based on the belief that vaccines cause autism (a claim already widely refuted by science and debunked as a fraud) is not exercising genuine autonomy, is being misinformed and, consequently, may be acting against the best interests of their child and public health.
This doesn’t mean we should return to medical paternalism. It means we need a more sophisticated and ethically robust approach, one that recognises that true autonomy requires quality information, time for deliberation, and support to understand complex options. This is where the concept of shared decision-making comes in.
Shared decision-making is not simply informing the patient and letting them decide. It is a structured process that includes: two-way communication about the clinical condition; clear presentation of evidence-based options (including the option of not intervening, when appropriate); exploration of the patient’s values and preferences; collaborative deliberation; and implementation of a consensual decision. It is a process that takes time, requires specific skills, and demands appropriate communication tools. It is a model that aims to empower the patient through knowledge and dialogue, not simply by delegating choices.
What often happens in practice is that healthcare professionals, pressed for time, lacking communication training, or unsure how to deal with patient resistance, end up using the rhetoric of autonomy as a way to avoid conflict or to avoid a deeper professional responsibility. “The patient doesn’t want to get vaccinated? That’s fine, they have the right to choose.” This may seem respectful, but it can be a disguised form of abandonment.
True respect for patient autonomy would require investigating the reasons for the refusal, clarifying doubts, correcting incorrect information, and helping the patient make a genuinely informed decision. This is laborious and doesn’t always work, but it’s what distinguishes patient-centered care from mere formalism.
The problem becomes even more serious when we consider that the ability to exercise substantial autonomy is not equal for everyone. Formal autonomy establishes the universal right to choose and operates according to the principle of equality, treating everyone equally. This approach can end up perpetuating inequalities by failing to consider different individual needs.
In contrast, substantial autonomy is based on the principle of equity, recognising that each individual requires different types and levels of support to exercise full decision-making capacity. The lack of this support disproportionately affects the most marginalised populations.
Structural dimension
This asymmetry in the ability to exercise substantial autonomy reveals a structural issue often ignored in debates on patient rights: autonomy does not exist in a vacuum, but is shaped by material, educational, and social conditions. A working mother who needs to decide about her child’s vaccination but only has access to WhatsApp groups is not operating in the same realm of possibilities as a specialist with direct access to scientific literature and training to interpret it.
This disparity manifests itself in particularly perverse ways in the context of pseudotherapies. Patients in vulnerable situations (whether due to serious illness, financial constraints, or low educational attainment) become prime targets of discourses that promise to “return control” through alternative choices. The rhetoric of autonomy, in these cases, functions as a smokescreen that conceals the exploitation of others’ vulnerability.
Healthcare institutions, in turn, may condone this conceptual confusion, albeit passively. By adopting a stance of apparent neutrality (“we respect the patient’s choice”), they absolve themselves of the responsibility to educate, clarify, and, when necessary, constructively challenge decisions based on incorrect information. This stance constitutes a subtle form of negligence.
The proliferation of health discourse on the internet has exacerbated this paradox: we’ve never had so much access to medical knowledge, but it’s also never been so difficult to distinguish reliable information from sophisticated misinformation. Social media algorithms, designed to maximise engagement, often amplify sensationalist and emotionally charged content to the detriment of more sober and factual scientific information. In this context, defending only the patient’s formal autonomy, without concern for the quality of the informational environment in which they interact, is like offering the freedom to swim in waters known to be unsafe for swimming.
There is a system that claims to respect autonomy while systematically failing to create the conditions for its genuine exercise. Even more troubling is when this same deficient structure is invoked to justify harmful decisions. “The patient was informed and chose this” is the phrase that ends the discussion, regardless of the quality of the information provided or the conditions under which the “choice” was made.
Ethical, effective, and evidence-based healthcare communication thus becomes a technical skill as important as mastery of clinical procedures. It’s not an optional soft skill, but an essential tool.
Final considerations
The misunderstood autonomy trap reveals the conflict between democratic ideals of individual freedom and the reality that genuinely free choices require specific conditions that are not available to everyone.
Overcoming this trap requires more than goodwill or occasional adjustments to clinical practices. It demands a reorganisation of how we think about healthcare, recognising that substantial autonomy is a goal to be built, not a natural condition we passively accept.
This implies investments in health education, the development of more effective and accessible communication tools, training professionals in communication skills, and, fundamentally, the recognition that health is a common good that transcends individual choices, with significant collective implications.
True autonomy in health is not achieved simply by declaring it a right for all human beings, but rather by establishing it as a real possibility through social and institutional structures that give it substance. This is perhaps one of the most urgent and complex challenges in contemporary healthcare.
This story was originally published by Revista Questão de Ciência in Brazil. It is translated and reprinted here with permission.
