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Respect for autonomy

The four common bioethical principles

The word autonomy comes from the Greek autos-nomos meaning “self-rule” or “self-determination”. According to Kantian ethics, autonomy is based on the human capacity to direct one’s life according to rational principles. He states,

Everything in nature works in accordance with laws. Only a rational being has the capacity to act in accordance with the representation of laws, that is, in accordance with principles, or has a will. Since reason is required for the derivation of actions from laws, the will is nothing other than practical reason.” (In Korsgaard, 2004)

Rationality, in Kant’s view, is the means to autonomy. Autonomous people are considered as being ends in themselves in that they have the capacity to determine their own destiny, and as such must be respected.

For John Stuart Mill, the concept of respect for autonomy involves the capacity to think, decide and act on the basis of such thought and decision freely and independently. Mill advocated the principle of autonomy (or the principle of liberty as he called it) provided that it did not cause harm to others:

That 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. His own good, either physical or moral, is not a sufficient warrant. ... Over himself, over his own body and mind, the individual is sovereign” (Mill, 1968, p. 73).

The principle of not causing harm to others (known as Mill’s “harm principle”) provides the grounds for the moral right of a patient to refuse medical treatment and for a doctor to refrain from intervening against the patient’s wishes. Nevertheless, Mill believed that it was acceptable to prevent people from harming themselves provided that their action was not fully informed.

Nowadays, an autonomous decision might be described as one that is made freely/without undue influence, by a competent person, in full knowledge and understanding of the relevant information necessary to make such a decision. It should also be applicable to the current situation or circumstances.

Many people see dementia as a humiliating disease involving a deterioration of mental power, the loss of one’s former personality and identity and eventually becoming a burden to others. Many dread the prospect of being deprived of the chance to decide their own fate and thus exercise their right to self-determination. Fears linked to this perception of dementia may include the fear of under-treatment (on the grounds that dementia cannot be cured) and the fear of over-treatment, thereby prolonging the suffering that accompanies dementia (Hertogh and Ribbe, 1996).

Self-determination is a central principle in health care, which is gradually moving away from a paternalistic approach towards a more individualistic, client-centred approach where the patient plays a more active role in his/her own health and well-being. Such an approach requires that patients take responsibility for making their own decisions and also that they bear the consequences of those choices.

However, it should be borne in mind that not everyone agrees with the emphasis that is currently placed on autonomy. For example, although the Danish Council of Ethics (2003) appreciates individuals taking responsibility for their own lives, it points out that the ideal of personal autonomy is based on extreme individualism and that this viewpoint takes the focus away from the fact that people are always influenced and to some extent dependent on others. They are what they are as a result of interactions with others and a particular history. Similarly, the Finnish National Advisory Board on Health Care Ethics - ETENE - (2001) cautions against concentrating almost exclusively on the principles of autonomy and self-determination. Whilst these principles may serve to protect patients from abuse and give them an active role in their treatment, ETENE states,

“…it is important to understand that help for a human being cannot be based on just a single, isolated principle – and far less on its mechanical application. Alongside self-determination, the principles of the common good, community and equity, among others, demand to be taken just as seriously.”

Nevertheless, the possibility to exercise some degree of autonomy, through advance consent or refusal of medical treatment and/or care, could be beneficial to many people with dementia.



Last Updated: Friday 09 October 2009


  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the German Ministry of Health for the implementation of the Dementia Ethics Network.
  • Bundesministerium für Gesundheit