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2009: Healthcare and decision-making in dementia

Background to healthcare system and patients’ rights

The healthcare system has been the subject of substantial legislative reforms in France for the last 15 years, resulting in the progressive recognition of the rights of vulnerable persons. This new legal framework consists of several pieces of legislation that, depending on the case, apply to strictly medical situations (e.g. a hospital stay related to a medical procedure etc.) and/or to care and support by social or socio-medical organizations (e.g. retirement facilities, services at home etc.).

We should note that the affirmation of fundamental health rights is most often the result of transposing into French law principles and values set out at the European or international level (e.g. the Universal Declaration of Human Rights of 10 December 1948, the European Convention on Human Rights of 4 November 1950, the Charter of Fundamental Rights of the European Union of 7 December 2000). Other sources with more limited legal scope complete the French standard-setting framework, such as the medical code of ethics and other ethical charters and professional guidelines.

The recognition of a general and absolute right to health protection is thus stated in article L. 1110-1 of the Code de la santé publique (French public health code): “The fundamental right to health protection must be implemented by all available means for the benefit of all persons”.

Since 2002, two pieces of legislation (Law No. 2002-2 of 2 January 2002 and Law No. 2002-303 of 4 March 2002) have reinforced several ethical principles in the French healthcare system such as respect of dignity, privacy and intimacy, the right to be informed, freedom of choice, informed consent, non-discrimination, the right to be protected and freedom of movement etc.


Consent to treatment

The recent reforms related to the right to health have sought mainly to restore the place of the patient’s wishes at the heart of the care system. Seeking the consent of the person who is ill is thus the prerequisite for any treatment.

Article L.1111-4 of the French Public Health Code stipulates in effect:

“that no medical act and no treatment can be practiced without the free and informed consent of the person and this consent may be withdrawn at any moment.”

This is because the human body is inviolable, and cannot be infringed upon without consent. The principle is already stated in the Code Civil (French civil code):

Article 16-1 states:

"Everyone has the right to respect for his/her body. The human body is inviolable……"

Article 16-3 states:

"An attack may be made on the integrity of the human body only in the event of therapeutic necessity for the person.

The prior consent of the interested party must be received except in those cases where his or her conditions necessitate a therapeutic action to which he or she is not in a fit state to consent."

In addition, general provisions surrounding the issue of consent can be found in article 36 of the Code of Medical Ethics[1]:

"The doctor must in all cases attempt to obtain the consent of the person examined or provided with care.

When the patient, while in such a condition that he is able to express his will, refuses the proposed investigations or treatment, the doctor must respect that refusal after informing the patient of its consequences.

If the patient is not in a fit condition to express his will, the doctor may only take action after warning and informing those close to the patient, except in emergency cases or in those where it is impossible so to warn and inform.

The obligations of the doctor with regard to the patient when he is a minor or a protected person of full age are defined in article 42."

Patients have the right to accept or refuse treatment. In order to be in a position to give informed consent, they must also be fully informed about what is involved and the consequences of the treatment. The obligation to inform the patient is covered by the article L. 1111-2 of the French Public Health Code:

“everyone has the right to be informed about the state of his/her health.”

In the event of litigation, article L.1111-2 paragraph 7 of the Public Health Code stipulates that the health professional or institution is responsible for furnishing proof that the information has been given to the person concerned […]. The proof can be furnished in any form.

Written consent is not obligatory but it is often requested for important decisions. In some hospitals, written consent (permission to operate) is systematically requested. It does not have legal value, except in cases where it is legally required (e.g. in the case of biomedical research – Law of 20 December 1988). However, due to recent court cases[2] the doctor must be able to prove that he/she has provided the patient with the relevant information in order to give informed consent. Consequently, doctors are increasingly requesting written consent. Nevertheless, it is not clear what the situation is concerning people who are unable to consent, i.e. whether the courts could demand proof that the patient's guardians had been informed.

Consent in the case of incapable adults

The doctor who performs a medical act without the patient’s consent is likely to engage his civil, legal and disciplinary responsibility. In the case of adults unable to make informed decisions, it must be ascertained whether or not they are under some form of guardianship.

If the person is unable to express his or her wishes but does not have a legal guardian, no action or investigation can be carried out without consulting a health care proxy, family member or friend (unless this is impossible, or in an emergency) (article L 1111-4 in the Public Health Code, article 16-3 in the civil code). The doctor listens to this opinion, but is not bound to follow it.

If the person has a guardian, it is the legal representative who consents to the treatment, although the consent of the protected adult must be sought systematically, to the degree that the person is able to express his/her wishes and participate in the decision.

Consent in case of emergency

In addition, general provisions surrounding the issue of consent can be found in one of the paragraphs of article 36 of the Code of Medical Ethics[3]:

"…/…If the patient is not in a fit condition to express his will, the doctor may only take action after warning and informing those close to the patient, except in emergency cases or in those where it is impossible so to warn and inform. …/…."

The right to refuse treatment

If a patient refuses treatment, the doctor must respect this decision. Nevertheless, he/she must make sure that the patient is aware of the consequences of this decision and try to convince the patient that the proposed treatment is in his/her best interests. If the patient remains firm in his/her refusal and the doctor is of the opinion that failure to have the treatment would be dangerous for the patient, he/she must suggest that they obtain a second opinion and insist on the necessity of the treatment. If the patient will not change his/her opinion, the doctor must not abandon the patient and must ensure that he/she continues to receive care should this be the patient's request.

The right to withdraw consent

Requiring free and informed consent in any treatment procedure implies that consent can be withdrawn at any time (article L.1111-4, par. 3 of the Public Health Code).

Consent to the donation of organs and/or human tissue

The laws on bioethics of 1994 and 2004 provide a new framework for organ donation which aims to reconcile the need for organs with the necessity to avoid the trafficking of organs.

Organs may only be removed from a deceased person for therapeutic or scientific purposes and provided that the person did refuse such removal during his/her lifetime. If the doctor does not have direct knowledge of the wishes of the deceased person, he/she must endeavour to find out what they were from people who were close to the latter (L 1232-1 of the Public Health Code).

If the deceased person was an adult who was under guardianship (“tutelle”), the organs may only be removed with the written consent of the guardian (“tuteur”).

Consent to non- conventional treatment

No specific legal provisions in French law.

Consent to research

Article L.1122-1-1 of the Public Health Code stipulates

“that no biomedical research can be carried out on a person without his free and informed consent, obtained after the information has been delivered to him. The consent is given in writing, or, when this is not possible, certified by a third party. The latter must be totally independent of the investigator and of the promoter.”

Regarding the consent of vulnerable persons, it is appropriate to ascertain whether or not a legal means of protection has been established.

When the person is not covered by a system of legal protection, but lacks the capacity to express consent,

“authorization is given by the health care proxy (“personne de confiance”), or in his absence by the family, or in their absence by a person who has close and stable ties to the person” (article L1122-2 II of the Public Health Code).

When there is substantial risk, the guardianship judge gives the authorization. It is important to note that the French system now allows biomedical research even when the vulnerable persons are not covered by a system of legal protection, which was impossible prior to the 9 August 2004 law.

When research is carried out on an adult who has a legal guardian (“tutelle”), the consent is given by the guardian.

If the “Comité de protection des personnes” (research ethical committee mandated to evaluate and approve in advance all biomedical research protocols) considers that there is significant risk of violating privacy or the integrity of the human body, authorization is may be given by the guardianship judge (or the Conseil de famille, family council, if there is one). (I changed “is” to “may be” as otherwise it sounds like the comité suggests that the research might not be in the person’s best interests but the judge then authorizes it regardless of these concerns)

When research is carried out on an adult who has a legal guardian under the “curatelle” system, the person gives his consent with the assistance of his guardian. In the event of a high level of risk, the guardianship judge is called on to determine the adult’s ability to give consent. If the adult is unable, the judge decides whether or not to authorize the research.

An adult under “sauvegarde de justice” (temporary court-ordered legal guardianship) may not participate in biomedical research.

We must note, however, that the opinion of the vulnerable person participating in the research must always be heard. The person must indeed “be consulted to the degree that their state permits” and seeking their “personal commitment” is mandatory (article L1122-2 of the public health code). (changed to person as a vulnerable person who participates in research is not necessarily sick)

The researcher informs the person whose consent is sought of his/her right to refuse to participate in the research or to withdraw his/her consent at any time, without incurring any liability or penalty.

The information communicated is resumed in a written document delivered to the person whose consent is sought. When the research is complete, the person who has been a subject has the right to be informed of the global research results, according to terms set out in the information document.

Approval for biomedical research

According to article L.1121-4 of the Public Health Code, it is mandatory that any biomedical research protocol be examined by a Comité de Protection des Personnes (CPP) (research ethical committee) and be approved before it is initiated. The committee gives its opinion on the project’s validity.

In contrast, no specifications are given for certain research projects termed “non-interventional”, notably in the human and social sciences, which do not fall into the CPP’s present field of competence. Some additional administrative authorizations may be required, often in the form of preliminary declarations (notably a declaration to the Commission nationale de l’informatique et des libertés – Law No. 78-17 of 6 January 1978 pertaining to data privacy – for any electronic processing of personal data). Yet these administrative procedures in no way constitute a global and multidisciplinary evaluation of research protocols, and only “common” legislations regulate their practice (information, obtaining consent and protection of personal data privacy).

Advance directives

The legal status of advance directives

Since 2005, article L.1111-11 of the Public Health Code allows any adult to write advance directives in preparation for the day he/she will no longer be able to express his/her wishes.

Conditions surrounding the writing, validity and registration of an advance directive

They take the form of a written document, dated and signed, which can be revoked at any time. The directives can be kept in the medical file for easy access, or remain in the patient’s possession or that of his/her health care proxy (“personne de confiance”).

What an advance directive can cover

These directives allow anyone to express their wishes about end-of-life care and limiting or stopping treatment, in case the person becomes unable to communicate his/her decisions.

Obligation to comply with instructions contained in an advance directive

The doctor is not bound by advance directives when he/she decides whether or not to limit or stop treatment. Nonetheless, the doctor is obligated before he makes his decision to initiate a “collegial procedure” in which the advance directives must be taken into account (article L.1111-13 of the Public Health Code).

On the condition that they were drafted less than three years before the person became incompetent, the doctor takes them into account in all decisions concerning investigation, medical procedure or treatment. But although the law gave them a lifespan of only three years, it should be noted that the spirit of earlier wishes endures, particularly when no new advance directives are written after three years.

Access to information/diagnosis

The right to be informed

The obligation to inform the patient can be explained by the need to obtain his/her free and informed consent beforehand. Several texts confirm this obligation.

The following paragraphs are taken from article 35 of the Code of Medical Ethics:

"The doctor must provide the person whom he examines, to whom he provides care or whom he advises, with honest, clear and suitable information concerning his condition and the investigations and care which he proposes. Throughout the duration of the disease, he must take into account the personality of the patient in his explanations and make sure that they understand them. (…./…).”

However, in the interests of the patient and for legitimate reasons which the practitioner is to judge carefully, a patient may be kept in ignorance of a serious diagnosis or a prognosis, except in cases where the case or the illness from which he is suffering exposes third parties to a risk of contamination.

A fatal prognosis should only be revealed circumspectly, but persons close to the patient must be warned, unless the patient has previously forbidden such revelation or has designated those third parties to whom it must be revealed."

Article L.1111-2 of the public health code thus states that “everyone is entitled to be informed about his/her state of health”.

This obligation to inform falls on the doctor for everything concerning medical procedures, but the obligation also applies to paramedical staff. This is specified in article L.1111-2 of the Public Health Code: “this (obligation to inform) is incumbent upon every health professional in the context of his proficiencies and in compliance with the professional rules applicable to him. He can be exempted only in cases of emergency or impossibility of informing.”

The first recipient of this information must be the patient, because the rule of medical confidentiality calls for this solution. Yet according to article L.1110-4 par. 6 of the Public Health Code, if the prognosis or diagnosis is serious, the rule of medical confidentiality allows for the family or health care proxy to receive the information, unless the patient objects.

When the person has a legal guardian (“tutelle”), the guardian receives the information. The doctor must nonetheless inform the patient, in a manner appropriate to his/her ability to understand: “the rights of adults under guardianship mentioned in the present article are exercised by the guardian. The latter receives the information called for in the present article, subject to the clauses of article L.1111-5 of the Public Health Code. The people concerned have the right to receive information themselves and to participate in making decisions that affect them, in a way that is appropriate to their capacities for understanding.” (L 1111-2 of the Public Health Code)

The information is imparted during an individual interview, in a clear and comprehensible way. This does not preclude the delivery of written documents to the patient.

In the event of disputes, the burden of proof in terms of information is now reversed. Article L. 1111-2, al.2 of the public health code states in effect that it is the doctor who must prove that he/she gave information and received consent. This proof can be furnished in any form.

Access to medical files

According to article L.1111-7 of the Public Health Code, communication of the medical file is an obligation for the health care facility and a right for the patient. This communication can take place directly or with a designated doctor as the intermediary.

“Everyone has access to all information concerning his/her health.” (Article 1111-7)

In practice, the French Public Health Code sets out very precise rules on modalities for disclosing the contents of the medical file (article R.1111-1 of the Public Health Code and following). For example, when the patient is in a health care facility, a written request must be sent to the hospital director or department head. The communication can take place on the premises or by sending copies of requested documents, in compliance with ethical rules covered by medical confidentiality.

The right to designate another person to be informed on one’s behalf

“Personne de confiance” (health care proxy)

The possibility of designating a health care proxy, called in France a “personne de confiance”, has existed since 2002. As article L.1111-6 of the Public Health Code states,

“any adult may designate a health care proxy who can be a relative, a friend or their doctor, and who will be consulted should the person concerned be unable to express his wishes and to receive information necessary for this purpose. The designation is done in writing. It can be revoked at any time. If it is the wish of the person who is ill, the health care proxy accompanies him at every step and is present at medical appointments to help him reach decisions.”

This designation can therefore take place at any moment, when the person is legally competent, well before hospitalization or admission to a social or socio-medical care facility.

To encourage people to appoint health care proxies, the law demands that in the event of hospitalization, the health care facility must suggest that the patient name a health care proxy for the duration of the hospital stay. The patient is free to refuse or agree to choose a health care proxy. This obligation to make the suggestion systematically at the time of admission, however, does not apply to social and socio-medical facilities.

When the patient is under a system of legal protection, the possibility of naming a health care proxy varies according to the measures of protection. If the person who is ill is under special partial guardianship – “sauvegarde de justice” or “curatelle” – the vulnerable adult may still appoint a proxy. If the person is under “tutelle” (general guardianship), it makes a difference whether the health care proxy was named before or after the guardianship decision. If the designation followed the guardianship, it is invalid. In the event that the designation preceded the guardianship, the health care proxy’s mission must be confirmed or invalidated by the guardianship judge.

Concerning the health care proxy’s role, let us remember that from a legal point of view, the health care proxy does not have the power to decide in the place of the patient who cannot express his wishes. In effect, from a simple supportive role during medical interviews and the consultation of the medical file, the health care proxy ends up with a simple consulting role in any medical procedure or treatment once the person does not have the ability to express his wishes. At the end of life, the proxy’s opinion must be sought when the doctor initiates the “collegial procedure”, but the doctor does not have to follow it. The only exception is biomedical research, which the health care proxy has the power to authorize (article L. 1122-1-2 and 1122-2, II of the Public Health Code).

The “health care proxy” measure does not therefore establish genuine “medical representation” or a “mandate” in the sense of the French civil code: at most, the health care proxy is the “voice” of the vulnerable.

“Mandat de protection future” (mandate of future protection or power of attorney)

By creating a “mandat de protection future”, the recent law (5 March 2007) reforming the legal protection of adults introduced a potential new interlocutor in health law. This mandate allows any competent person (or under “curatelle” guardianship with the help of his guardian) to designate, in view of a time when the person will no longer be able to manage his own life unaided, one or several other people to act as his representatives in all personal matters.

Derived either from a notarized mandate or a private agreement, the representative’s powers can be more or less extensive. This representation could cover financial as well as medical issues, as the mandate could apply to property and/or personal rights. Regarding health, the representative could also take on all the tasks performed by the guardian or the health care proxy, within the framework of the duties assigned to the guardian or the health care proxy by the Public Health Code and the “Code de l’action sociale et des familles”, the French social action and family code. The representative could for example authorize research, consent to a medical procedure or receive medical information.

The doctor’s right to withhold information

According to article 35 of the Code of Medical Ethics:

"…/… However, in the interests of the patient and for legitimate reasons which the practitioner is to judge carefully, a patient may be kept in ignorance of a serious diagnosis or a prognosis, except in cases where the case or the illness from which he is suffering exposes third parties to a risk of contamination.

A fatal prognosis should only be revealed circumspectly, but persons close to the patient must be warned, unless the patient has previously forbidden such revelation or has designated those third parties to whom it must be revealed."

The patient’s right to refuse information

Article L. 1111-2 al 4 of the public health code states that the wish of a person to remain ignorant of a diagnosis or a prognosis must be respected, except when others are at risk from transmission.”

Confidentiality/disclosure of information to other people

According to article L. 1110-4 of the public health code, medical confidentiality applies to all health care professionals, as well as to all professionals (non-medical staff) working in the health care system:

“Any person taken into the care of a professional, an institution, a health network or any other body participating in prevention and care has the right to respect for his privacy and for the confidentiality of information concerning him.”

The obligation to maintain secrecy is also stipulated in article 4 of the Code of Medical Ethics. It states:

"Professional secrecy, instituted in the interests of the patient, is required from all doctors under the conditions imposed by law.

Secrecy covers everything which comes to the knowledge of the doctor in the exercise of his/her profession; that is to say not only information which is given to him or her but also what he or she has seen, heard or understood.”

End-of-life care and issues

Palliative and end-of-life care

Since 1999 and in addition to a French Palliative Care Plan implemented in 2002, the law stresses that doctors safeguard the patient’s dignity by ensuring palliative care. It thus reaffirms the right to palliative care, which consists of active and continuous treatment from a multidisciplinary team, in cooperation with volunteers who provide support, within a care facility or at home. The purpose of this care is to relieve pain, to calm psychological suffering, to safeguard the person’s dignity and to support his/her family and friends. The goal is to ensure the highest possible quality of life until death. Palliative care is organized through all the different care systems within health care facilities, at home and in different socio-medical institutions and services.

However, according to article 37 of the Code of Medical Ethics, the doctor must make every effort to ease the suffering of his/her patient, provide moral support and avoid unreasonable persistence in examinations or therapy. Article 38 of this code states that the doctor does not have the right to deliberately bring about the death of a person. Moreover, it is the doctor's duty to accompany the dying person in his/her last moments, to ensure the appropriate kind of care and attention, safeguard the dignity of the patient and comfort his/her entourage.

Concerning end-of-life situations, French law does not allow euthanasia. Since 2005, the 22 April 2005 law defines the framework surrounding end-of-life situations and condemns “unreasonable obstinacy”. Article L. 1110-5 of the public health code indeed clearly states that the doctor “must strive to relieve the suffering of the patient by means appropriate to his state and to give him moral support. He must abstain from all unreasonable obstinacy in investigation and treatment and may withhold or end treatment that appears pointless and disproportionate, or have no other purpose except the artificial maintenance of life.”

When the patient is unable to express his/her wishes, the doctor may not decide to withhold or end treatment without first having initiated a “collegial procedure”, with the imperative aim of collecting the opinions of others (the care giving team, another physician, the health care proxy, relatives and friends, as well as consideration of the advance directives).

Assisted suicide and non assistance to a person in danger

There is no actual law forbidding assisted suicide in the French penal system. However, helping someone to commit suicide can be assimilated into the law concerning the non-assistance of a person in danger. According to article 223-6 of the Penal Code, a person who does not offer assistance or seek help for a person who is in danger of his/her life, receives the same punishment as a person who could but does not prevent a crime against another person.

In 1988 in response to a guide to suicide, the government added two new articles to the Code to cover provoking suicide. Part one of article 223-13 of the Penal Code is relevant in that it states that:

“The provocation of another person to commit suicide is punished by three years' imprisonment and a fine of € 45,000 where the provocation was followed by a suicide or attempted suicide.”


Euthanasia is assimilated into homicide in the French penal code. The relevant extracts of the Penal Code are as follows:

Article 221-1

“The wilful causing of the death of another person is murder. It is punished with thirty years' criminal imprisonment”

Article 221-3

“Murder committed with premeditation is assassination. Assassination is punished by a criminal imprisonment for life.”

Article 221-5

"Making an attempt on the life of another person by the use or administration of substances liable to cause death constitutes poisoning and is punished by 30 years imprisonment."

Article 122-2

"A person who acted under the influence of a force or a constraint which he or she could not resist is not criminally responsible."

[1] Decree N°95-1000 of 6 September 1995 on the Code of Medical Ethics

[2] e.g. Ruling of the Cour de Cassation of 25 February 1997

[3] Decree N°95-1000 of 6 September 1995 on the Code of Medical Ethics



Last Updated: Wednesday 27 April 2011


  • Acknowledgements

    Alzheimer Euriope gratefully acknowledges the support of Fondation Médéric Alzheimer which made possible the data collection and publication of the country reports in our 2009 Yearbook.
  • Fondation Médéric Alzheimer