When Consent Is Not Enough: The Construction and Development of the Modern Concept of Autonomy

Por Dr. Eduardo Dantas (WAML Vice-President)

Since the end of World War II, the bioethical concept of patient autonomy has gained importance, shifting the centuries-old balance in the paternalistic relationship between physicians and their patients. Case law stating the importance of consent can be found in Anglo-Saxon jurisprudence since the late years of the 18th Century but it was only after the Nuremberg trials, and moreover, the Tuskegee´s experiments, that informed consent became one of the pillars of modern medicine, and almost the Holy Grail of medical ethics.

Very often, tough physicians and health care providers misunderstand the concept of the so-called informed consent. The right to be informed has nothing, or very little, to do with the true exercise of the patient´s autonomy. The act of consenting to some treatment, research, experiment or surgical procedure is just part of a bigger process, where the patient can exercise his/her autonomy. Someone can consent, based on trust in the doctor, based on indifference, fear, or even because he/she did not receive all the necessary information to really choose among different possible options.

We have been stressing the importance of consent – and consent forms – over the past years, forgetting that there are more important situations to be dealt with, arising from the relationship in question. Let us take as an example, article 5 of the European Convention on Human Rights and Biomedicine (the Oviedo Convention). All attention is drawn to the first part of the text, which says that “an intervention in the health field may only be carried out after the person concerned has given free and informed consent to it”. The key to understanding the true spirit of the law lies in the second part of the article, which states that “this person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks”.

Appropriate information seems to be the main element concerning a patient´s autonomy rights. The information, to be “appropriate”, does NOT need to meet the doctor´s assessment of the situation, but the patient´s. All relevant data, alternatives (even those the physician thinks are not appropriate to the case, based on his/her experience) and risks must be disclosed to the patient, in an understandable way, in order to provide sufficient elements for a decision – a choice – to be made. This – and not the act of consenting – is the real exercise of autonomy. These exact same ideas are expounded in article 11 of the Interamerican Convention of Human Rights (1969).

In the U.S., the Patient Self-determination Act regulates the idea of the right to information as a basic requirement, the right to informed consent being just a part of the process, not its final goal. A consent form, signed by the patient, is not a safeguard from lawsuits. It is an important document but cannot be seen as the only thing that matters in defensive medicine. Examples of legal documents could go on and on from all over the world, showing that there is a new way of dealing with old dilemmas, and that health care providers have to adapt their concepts to the new ideas. The world has evolved and that requires adaptation.

A patient does not need to consent to a proposed treatment. This may come as a shock to many doctors, as they are trained to “fight” diseases, and save lives, no matter what. What they are not taught in medical schools is the fact that their main obligation – apart from acting with the best of their techniques and skills – is that they must provide information to the patient. The patient will decide, based on his/her personal life, values, morals and beliefs, which is the best option. Only then can autonomy be respected and enforced.

Health care providers tend to think that the sanctity of life is the most important guarantee and the most important fundamental right in modern constitutions in the western world. It is not. Legislators – and philosophers – all over the world are beginning to understand Human Dignity as a fundamental principle. Dying with dignity – choosing not to undergo painful treatments to prolong life beyond cure; choosing to withdraw useless treatment, to leave the hospital and die at home, surrounded by family and friends instead of doctors, nurses and beeping machines; and even refusing treatments that would intrude deeply against a patient´s religious beliefs – is part of living with dignity. This is a fundamental right that must be enforced.

The physician’s obligation is to help the patient to choose what is best for him/her, providing complete and adequate information. Is the doctor more prepared to understand the technical consequences of each choice? Undoubtedly, yes, but the patient has the final word, which cannot be compromised by the physician´s personal opinions. Otherwise, we are back to Tuskegee and Nuremberg.

These words may sound to some as praise for suicide. They are not. They are a vivid defense of autonomy, of the right to choice; a defense of the idea that responsibility for one´s own acts has to walk side by side with rights. Therefore, we need to stop discussing excessively about informed consent and start focusing on informed choice. We are accustomed to talking and reading about patients’ rights and medical liability but it is time to start thinking about shared responsibilities, to start thinking about patients’ duties, since they are granted the power of actually choosing how their life and treatment must be conducted. With great power, comes great responsibility.

Eduardo Dantas
Lawyer, MPhil. in Medical Law by the University of Glasgow. Vice-President of the World Association for Medical Law.

Fonte: WAML 2010 Issue 4, 10/11