In medical ethics, could the patient’s right to don’t know limitation affect the patient’s autonomy?

On 28 June 2021, Ben Davies published an article entitled Compromising on the Right Not to Know? in which he described and explained the different philosophical positions that analyze the right not to know.

That right, said the author, derives from the right to patient autonomy: “Personal autonomy is the guiding light of contemporary clinical and research practice, at least in the UK [United Kingdom]”.

Thereafter (in this context and abridging what Davies explained), he distinguishes, on the one hand, autonomy as liberty, i.e., I can do whatever I want, especially concerning myself, so if I don’t want to know, I don’t want to know; and, on the other, autonomy as a duty, given that (we stress that in this context), I will have little autonomy if I do not have sufficient relevant information to decide on the options to take. Davies supports the second theory.

So, what legal and ethical considerations can we provide in this regard?

First of all, a preliminary, but necessary question. This article is written by the Bioethics Observatory at the Catholic University of Valencia, Spain. We are therefore not part of Anglo-Saxon culture and, consequently, while there are certainly correlations in our bioethical foundations, there are also differences.

Does that mean we do not respect the principle of autonomy?

Not at all. In fact, it is regulated in national and European legislation. Moreover, even the right not to know is regulated.

“Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed” (Article 10.2 of the Oviedo Convention).

Article 1.1 of Spanish Law 41/2002 on Patient Autonomy states that: “Patients have the right to know, in connection with any action in the area of their health, all the information available about it, except for the cases exempted by Law. Furthermore, everyone is entitled not to be informed if he or she so wishes”.

Thus, in fact, the ethical principle of not wanting to be informed has been elevated to the category of right in our Laws, both national and European.

Are we fully autonomous if we are not sufficiently informed?

On that, we agree. Yet Davies’ argument is interesting: Are we fully autonomous if we are not sufficiently informed?

From our end, let’s add the following questions for the sake of reflection. Is the principle of autonomy absolute? Should it be applied uncritically in all cases, automatically and with no rational or reasonable argument? Should it be applied in cases where other principles with which the principle of autonomy may collide or conflict could also be affected and involved? And, within this context, is the right not to know absolute, or are there exceptions?

Think, for example, of cases such as clinical trials (where the duty to inform is more stringent), minors (especially those under 12 years of age, where the right to representation applies), or in certain psychiatric cases (in which autonomy may be diminished).

This is why the Oviedo Convention has the following caveat: “In exceptional cases, restrictions may be placed on the exercise of the rights contained in section 2 in the interests of the patient” (article 10.3 of the Oviedo Convention).

Must always do so for the benefit of the patient’s health.

In cases such as those mentioned, the principle of autonomy clearly comes in, but so too do the principles of beneficence and non-maleficence: whoever has to decide must always do so for the benefit of the patient’s health.

If to the preceding analysis, formulated from a Principlist bioethics, we address the valuable contribution proposed by Personalism, the aforementioned principle of autonomy is formulated from this bioethical current as that of Freedom and Responsibility, which adds a very interesting nuance to the assessment of the right not to know. The exercise of freedom in its full sense necessitates an assessment of the consequences of free choice, both for the person who decides and those who may be affected by his or her decision. The boundaries established by the responsibility assumed with each decision are those that limit the exercise of free choice. Not knowing can sometimes mean a real inability to weigh the consequences of my decisions, keeping me from being responsible for them, especially when they may cause harm to myself or others. There is no freedom without truth, nor truth without responsibility, because the possible consequences of our choices must always be included in the deliberative process. This is the exercise of prudence.

Perhaps we should rethink what Edmund Pellegrino calls “beneficence-in-trust”. An interpretation of the principle of beneficence as adult beneficence: neither the doctor without the patient, nor the patient without the doctor; rather, the patient with the doctor. It will be up to the doctor to build trust in that relationship.

Information delivery from doctors to patients

Perhaps we should also rethink the doctor’s duty to inform. Information delivery from doctors to patients should be included more seriously in Health Science faculties, instead of deferring acquisition of this skill to the beginning of professional practice, a time at which errors can be made in the information delivery, resulting, therefore, in failure to gain the aforementioned trust.

Bioethics statement

Finally, we would like to make four clarifications:

  • 1) We fully agree with the importance of the principle of autonomy because it derives from the principle of principles: human dignity.
  • 2) However, autonomy does not have to be the absolute value, especially when it conflicts with other principles. We are therefore talking about certain cases, such as those described.
  • 3) The last two proposals, together with Davies’s reflection, are compatible with the principle of autonomy.
  • 4) It is not that we do not agree with the right not to know, which we do, but simply that the two aforementioned considerations are proposed for deeper reflection.

David Guillem-Tatay – PhD

Bioethics Observatory – Institute of Life Sciences UCV

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