The objective is to end the legal confusion relating to the difficulty of acquiring the consent of a person suffering from Alzheimer’s disease and to clarify the roles of the various people around the patient: trusted person, guardian, carer.

Context and issues

As early as 2004, the consensus group on freedom of movement described with precision the context in which a dependent person finds himself or herself cared for and on occasion accommodated against his or her will. Indeed, the impossibility of obtaining informed consent makes his or her agreement debatable even when it is expressed.

Moreover, in the patient’s own interests, caring for the patient may involve using techniques that seriously restrict his or her freedom (closed units, magnetic bracelets, restraint belts). Without questioning medical protocol and the reality of these methods being indicated, it must be admitted that the consequent deprivation of liberty must be legally supervised. This question is well known in the field of psychiatry. But the legal provisions in force in this area do not apply to medico-social establishments. The result is a legal vacuum that needs to be filled.

In addition, the law of 5 March 2007 reforming legal protection for adults now provides the possibility of organising one’s own protection in advance: anyone can now draw up a future protection mandate, entrusting responsibility for looking after them and their affairs when they can no longer do it themselves to a person of their choice. The appointed person may be given the role of legal representative or trusted person. This is a kind of living will that enables one’s own dependence to be anticipated. However, this legal tool cannot be applied to people who are already affected by Alzheimer’s disease.

Finally, while the new provisions of the 5 March 2007 law respond to situations of accommodation against the patient’s will or without their consent, including elderly people directed into medical retirement homes, by requiring a decision from a guardianship judge (juge des tutelles), these texts only apply to people subject to judicial or legal protection. No provisions exist outside these procedures.

Measure

Given the complexity of the issue, a working group has been set up to look at the subject: it consists of representatives of the ministries concerned and representation from the CCNE, the Alzheimer’s Collective and patients’ families.
Before 30 June, the group will propose concrete solutions for settling this delicate question, which raises the issue of fundamental freedoms and the rights of the most vulnerable citizens.