The ‘right’ not to know, autonomy, and general practice

Richard Armitage is a GP and Honorary Assistant Professor at the University of Nottingham’s Academic Unit of Population and Lifespan Sciences. He is on Twitter/X: @drricharmitage

Respect for autonomy is considered to be of high importance in almost all moral theories. It is, for example, a central element of Immanuel Kant’s deontological moral theory, while the utilitarian philosopher John Stuart Mill argued its importance in his On Liberty (Mill used alternative terms, however, such as ‘liberty’ and ‘individuality’). Although it does not amount to a complete moral theory in itself, all GPs will be familiar with Beauchamp and Childress’ Four Principles framework,¹ which elevates respect for autonomy as a foundational component to ethical medical practice (Raanan Gillon describes autonomy in relation to these other principles as the ‘first among equals’).² This essay shall explore what a respect for autonomy requires of GPs, its manifestation as the patient’s ‘right’ not to know, and the problems this raises for contemporary general practice.

What is autonomy?

‘Autonomy’ is derived from the Greek ‘auto’ (meaning ‘self’) and ‘nomos’ (meaning ‘rule, governance, or law’). Autonomy is the principle that individuals have the right to make decisions, hold views, and undertake actions based on their personal views and values. Broadly speaking, a person is autonomous if they govern their own decisions and actions.

The importance of respect for autonomy — particularly in contemporary medical practice — has increased with changing social expectations and, arguably, the flattening of hierarchical social and political structures. In earlier times, the authority of the physician was simply accepted, and the doctor was expected to dictate to the patient precisely what he or she must do. In modern medical practice, however, we expect patients to engage in shared decision making with the GP providing their care, and it is the patients themselves — rather than their doctors — who ultimately decide which treatment options to accept.

For patients to be involved in this decision making, they must be informed of the relevant information regarding their care, such as the treatment options available and their associated risks and potential benefits. This requirement places an additional burden on medical professionals, who now must not only be experts in diagnosing and managing medical conditions, but also in communicating complex information in ways that are accurate yet understandable to non-medical professionals.

There are various conceptualisations of autonomy. First, autonomy refers to the capacity for self-determination, meaning what a person could do under the necessary conditions or given the required resources (for example, a prisoner who lacks the means to escape lacks the capacity for self-determination). Second, realised autonomy is autonomy that is actually being exercised (for example, a patient who does not attend to the available relevant information regarding their medical care lacks realised autonomy). Third, normative autonomy is what autonomous people ought to be allowed to do, or the rights that people have to exercise their capacity for autonomy.

In his Two Concepts of Liberty, Isaiah Berlin distinguished negative liberty from positive liberty.³ While negative liberty is the absence of constraint, positive liberty is having control over oneself. Negative liberty is often necessary but not sufficient for the exercise of autonomy, such as a prisoner who wishes to escape. Furthermore, a person can be without constraints (meaning they have negative liberty) without being autonomous, such as if their choices are governed by addiction, indoctrination, manipulation, or ignorance.

Sometimes, negative liberty can even conflict with autonomy, such as in Ulysses contracts. In Homer’s Odyssey, Ulysses instructed his men to tie him to the mast of his ship to prevent him from being lured by the captivating Sirens’ song. In doing so, he sacrifices some negative liberty in order to exercise his autonomous will. Without being tied to the Ulysses, he would be unable to achieve his autonomously chosen goal to not wreck his ship, since his ‘free’ action (with negative liberty) would not be autonomous due to the irresistible power of the Sirens’ song.

For desire-based accounts of autonomy (such as those of Frankfurt,⁴ Dworkin,⁵ and Haworth⁶), autonomous action does not emerge from mere desires, but instead from our own authentic desires. These accounts distinguish between first-order desires (such as ‘I want to eat this cake’ or ‘I want to lose weight’) and second-order desires (such as ‘I wish my desire for cake wasn’t so strong’ or ‘I want my desire to lose weight to be the desire I act on’). On this view, autonomy is about the relationship between our first-order and higher-order desires. For Dworkin, autonomy is coherence between our first-order and higher-order desires, while for Howarth, autonomy is acting on the desire that we want to be moved by.

Why does autonomy matter ethically?

There are three main claims for why autonomy matters ethically. The first is instrumental value, or autonomy acting as a means to an end. This recognises autonomous individuals as the best judges of their own wellbeing, meaning that respect for autonomy will tend to maximise personal happiness, which clearly matters ethically.

The second is intrinsic value, or autonomy acting not merely as a means to an end (such as happiness), but as a fundamental constituent of happiness in and of itself (Mill made this claim in his On Liberty, arguing that ‘If a person possesses any tolerable amount of common sense and experience, his own mode of laying out his existence is best, not because it is the best in itself, but because it is his own mode’ ).⁷

The third is deontological constraint. Kant holds that autonomy is central to moral agency and personhood, meaning to not respect a person’s autonomy — by treating them as a means rather than as an end in themselves — is to fail to respect them as a person.

What does respect for autonomy require of GPs?

Fundamentally, a failure to respect a patient’s autonomy involves interfering with the patient’s capacity to make autonomous choices, or interference with the patient’s opportunity to act on those choices, or both. This generates two kinds of duties for GPs: negative duties and positive duties.

Negative duties require GPs to avoid certain acts, such as not manipulating patients through deception, not coercing or threatening patients, and not using undue incentives to influence patients (although what ‘undue’ amounts to is open to interpretation).

Positive duties, on the other hand, require GPs to perform certain acts, such as providing opportunities for patients to make their own choices (such as through valid consent), enabling patients to act on their own choices (such as through making alternative treatments available), providing patients with sufficient, relevant, and accurate information regarding their health and medical treatment in a manner they can understand, assisting patients with understanding and decision making regarding their care, and helping patients to overcome any weakness of will (which might include the use of Ulysses contracts). If these are prima facie duties of GPs, then they could be outweighed by other considerations, such as GPs’ concurrent duties to beneficence, non-maleficence, and justice.

Possible grounds for interfering with autonomous decisions

The increased importance of autonomy in medical practice raises challenging questions regarding how far respect for autonomy should extend. For example, how should GPs handle a patient’s request for inappropriate, harmful, experimental, or enormously expensive treatments?

A general principle is that patients have a right to refuse treatments that the GP considers to be appropriate for them, but do not have a right to receive treatments that the GP considers to be unsuitable for them. As such, respect for autonomy is not an absolute duty of the GP, and there is ongoing debate about when and how it should be superseded by the other duties and ethical principles that often clash with autonomy.

Generally, there are two grounds on which interfering with a patient’s autonomous decisions might be ethically justified. The first is to benefit or prevent harm to the patient. This is known as medical paternalism and is exercised in, for example, the regulation of pharmaceuticals, medical equipment, and medical devices, the compulsory treatment of particular medical conditions, and the legislation of seat belt and crash helmet wearing.

The second is to benefit or prevent harm to others. Mill described this in On Liberty as ‘The Harm Principle’ — ‘The only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others’ ⁷ — and includes practices such as mandatory quarantine, compulsory vaccination, the detention of patients who are a danger to others, and the rationing of finite healthcare resources.

The ‘right’ not to know

In order to respect autonomy, therefore, GPs must provide their patients with sufficient, relevant, and accurate information regarding their health and medical treatment. Given this, what should GPs do if their patients do not want to receive this information — if they do not want to know? This concept is widely known as the patient’s ‘right not to know’ (although it generally does not qualify as a genuine right).^8,9

The ‘right’ not to know is supported by two main ethical arguments. The first is an appeal to non-maleficence. This is because receiving medical information about oneself can, for some patients, be extremely distressing, while some diagnoses can lead to social stigmatisation and discrimination. Especially when there is no effective cure, the harms of receiving particular medical information might be greater than maintaining medical ignorance for some patients. The second argument is an appeal to autonomy. This is because a patient’s autonomous life is guided by that patient’s own choices, meaning they should therefore not be forced to receive information that they do not want to receive, since that would prevent them from directing their own life.

While it emerges out of the GP’s respect for autonomy, the patient’s ’right’ not to know generates a variety of challenges in general practice. An obvious problem is the practical challenge of respecting this wish for medical ignorance across the wide range of health professionals involved with the patient’s care. This multidisciplinary team is likely to include several GPs, various allied health professionals within primary care, and multiple specialty doctors across secondary care.

While this problem is substantial (particularly in the absence of a single electronic record that can be shared and accessed by all these professionals to alert them of the patient’s preference), it is a challenge of a merely practical nature that is theoretically surmountable. Other problems that are arguably less tractable are of an ethical character, and include the following three examples.

First, in addition to a duty to respect autonomy, GPs also hold a duty to beneficence, meaning they must practice in the best interests of their patients. Even if GPs do not explicitly inform their patients of the medical conditions they are being treated for, patients are usually able to elucidate this information from the nature of the care they receive. For example, a short course of medication is often an antibiotic and suggests an infection, a 2-week-wait referral suggests a suspicion of cancer, and repeating a liver function test suggests there was a problem with the first result. Therefore, to truly honour the patient’s ‘right’ not to know, a GP would largely have to refrain from providing any medical care at all. As such, a patient invoking this ‘right’ places the GP’s concurrent duties to autonomy and beneficence in tension with one another. However, as discussed earlier, the GP’s duty to respect autonomy is not absolute, and can be superseded by other competing duties and ethical principles. Therefore, while a claim to beneficence could be raised to justify the patient’s preference for medical ignorance, the strength of this claim will depend on the potential harm to the patient of it being maintained. For example, a patient that only wishes not to know the name of the causative organism of their lower urinary tract infection because they do not want to be reminded of their late mother’s Klebsiella urosepsis has a stronger claim than the patient with urosepsis who wishes not to know that they have an infection at all (since this would likely preclude the use of antibiotics, as most patients know that these are used to treat infections, meaning their use would alert the patient to the fact of their infection).

Second, agents other than the patient — such as their family members — might be harmed by the patient’s medical ignorance. Examples include cases of communicable diseases, inheritable genetic conditions, and the friends and family of symptomatic patients who are distressed by their choice to ‘ignore’ their health problems. In a secondary care setting, it is usually clear (although not always)¹⁰ that doctors do not owe a professional duty of care to anybody other than the patient under their care. However, GPs often look after entire families, meaning the family members of a GP’s patient are often patients of the same GP in their own right. Therefore, the GP might encounter a patient who is being harmed by the self-inflicted medical ignorance of their family member, who is also a patient of the same GP. Since confidentiality is another prima facie duty of the GP — meaning they cannot inform the family member of information concerning the patient that the patient does not want to learn — it is ethically challenging to optimally reconcile these competing duties.

Third, if a patient’s medical ignorance prevents their medical condition from being appropriately treated, avoidable complications of this condition are likely to ensue (thereby violating the GP’s duty to beneficence). This patient is likely to seek further medical attention to address these complications, which might include increasing severity of the initial symptoms or the development of troublesome new ones. This will require the usage of scarce healthcare resources that the patient would otherwise have not consumed had they waived their ‘right’ not to know and received the relevant information and appropriate treatment. In a system of socialised health care, this places the GP’s duty to promote justice under tension with their duty to respect autonomy.¹¹

Conclusion

While respect for autonomy is central to the ethical care provided by GPs for their patients, its manifestation as the patient’s ‘right’ not to know places the various other duties of the GP in tension with one another. While it might be ‘first among equals’, the non-absolute nature of the duty to autonomy allows for the considered balancing of these competing duties by the ethically astute GP.

References
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5. Dworkin G. The theory and practice of autonomy. Cambridge: Cambridge University Press, 1988.
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7. Mill JS. On liberty. London: John W. Parker and Son, 1859.
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10. The Outer Temple. ABC v St George’s Healthcare NHS Trust & Ors [2020] EWHC 455 (QB). 2021. https://www.clinicaljudgment.com/2021/02/28/abc-v-st-georges-healthcare-nhs-trust-ors-2020-ewhc-455-qb-2 (accessed 14 Nov 2023).
11. Davies B. The right not to know and the obligation to know. J Med Ethics 2020; 46(5): 300–303.

Featured photo by Oscar Keys on Unsplash.