P Nikiforos Diamandouros: Patients' rights in Europe today (link)

Strasbourg, 20 June 2005

"Patients' rights in Europe today"
Speech by the European Ombudsman, Professor P. Nikiforos Diamandouros, to the Second Hygeia- Harvard Medical International Conference, "Preventive Medicine in the 21st Century"
Chalandri-Athens, 3 June 2005

[...] Varieties of rights

In contemporary legal and political debate, the language of rights is increasingly used to assert and to recognise the legitimacy of a wide variety of claims and interests.

Look, for example, at a modern document such as the Charter of Fundamental Rights of the European Union. The Charter was proclaimed at the Nice summit of the European Council in December 2000 and forms Part II of the Constitution Treaty for Europe. It constitutes the European equivalent of a Bill of Rights.

In the Charter, we find not only individual rights, but also statements of principle that could imply group or collective rights, such as prohibitions on making the human body and its parts a source of financial gain, and on reproductive cloning.

These prohibitions are included in Article 3 of the Charter on the "right to the integrity of the person".

I shall not focus on these principles, nor, for example, on public participation in debating the priorities, values and principles of public health care policies, which was the subject of a recommendation made by the Council of Europe in the year 2000.

That is not because I consider these questions as unimportant, but because the issues are different from those involved in individual rights.

The introduction to the 1995 version of the French Charter for hospital patients expresses well the approach that I am adopting: "[a] hospital patient is not just someone who is sick. He is first and foremost a person with rights and duties". (" Le patient hospitalisé n'est pas seulement un malade. Il est avant tout une personne avec des droits et devoirs. ") I should add: that goes for all patients, not just those in hospital.

3 Categories of individual rights

In my view, the individual patient's rights fall into three categories:

* Rights to redress, including compensation;

* Rights of access to medical care; and

* Autonomy rights.

[...]

4 Rights and the doctor-patient relationship

Periodisation of the doctor-patient relationship
Shorter divides the history of the doctor-patient relationship since the 18th Century into three periods, which he calls "traditional", "modern" and "post-modern". For reasons that need not detain us, I prefer to label the third period as "contemporary" or "late modern".

The traditional period was characterised by an unscientific and largely unfounded therapeutic confidence on the part of doctors, which met with considerable scepticism among patients. As a result, doctors had a relatively modest social status during this early period.

The modern period begins with the gradual arrival, during the 19th Century, of a scientific basis for medicine, founded on the proper physical examination of patients, accurate diagnosis and finally the success of the germ theory of infectious disease.

Although unable to offer cures for many of the conditions that he could diagnose and explain, the doctor became, as Shorter puts it, a "demi-god possessed of boundless authority over patients".

The doctor's authority as a man of science was the foundation for what the Emanuels call the "paternalistic" model of the doctor-patient relationship.

In this model, the doctor determines what is in the patient's interests, including how much the patient should know and indeed whether the patient should be told the truth about his or her condition and prognosis.

The patient's role is, in essence, to follow the doctor's orders.

The paternalist model thus focuses on the inequality of expertise in the relationship as a reason for giving the doctor, rather than the patient, autonomy in making decisions about what should happen to the patient.

The contemporary or late modern period began when scientific advances made it possible for doctors to cure patients with drugs, such as the sulphonamides in the 1930s and antibiotics after the Second World War.

Paradoxically, this spectacular therapeutic success has been accompanied by a decline in medical authority. In Shorter's view, this results from the effect of the media on patients' knowledge of medicine and medical procedures.

I am persuaded that the phenomenon should also be seen as part of a more general development in contemporary societies. Science and expertise are no longer accepted as constituting, by themselves, the legitimate basis for decisions that also involve values, or individual and social preferences.

This development is in turn connected to the wider cultural and political context defined by the growing ascendancy in the world of late modernity of democracy and especially of its liberal variant with its emphasis on both equality and liberty as fundamental to the ordering of our lives.

Two models of the contemporary doctor-patient relationship

[...]

I will conclude with a final thought about the significance of the autonomy rights.

I argued earlier that the very nature of the consumerist model makes it vulnerable to bureaucratic and legal pressures that tend towards new, external, forms of paternalism.

I wish to stress that the communicative model does not, in and of itself, make these pressures disappear. It can, however, help resist them, if it is allowed to work effectively.

For this to happen, the autonomy rights are essential.

I would, therefore, suggest that we should understand these rights not so much as rights of the patient against the doctor, but as the foundation for the successful protection of the relationship between doctor and patient, to the mutual benefit of both parties.