Advance directives

All about advance directives in France

Advance directives are an important topic that allows everyone to take control of their healthcare journey, particularly in the event of a serious medical situation or at the end of life when they are no longer able to express their wishes. Although difficult to discuss, these legal provisions offer security and peace of mind, both for the person concerned and for their loved ones and the medical team. They fall within the framework of laws relating to patients' rights and end-of-life care in France, notably the Léonetti Law of 2005 and the Claeys-Léonetti Law of 2016, as well as the Kouchner Law of 2002 on patients' rights.

Advance directives: what are they?

An advance directive is a written declaration in which an adult expresses in advance their wishes concerning the continuation, limitation, cessation, or refusal of treatments or medical procedures in the event that they are no longer able to express themselves. This document aims to inform doctors of your wishes. In unforeseen situations such as a stroke, a car accident, or the sudden worsening of a chronic illness, a person may become unable to express their wishes regarding end-of-life care. The advance directive then replaces the expression of your free and informed consent. It allows healthcare professionals to make a decision that is as close as possible to your wishes. The main objective of this document is to avoid situations of unreasonable obstinacy, that is, treatments that would appear futile, disproportionate, or have no other effect than artificially prolonging life. By clearly expressing your wishes, you guide the medical team in their decisions. In addition to informing doctors, advance directives also play an important role for those around you. They prevent your designated representative, a close friend, or a family member from having to face a painful and difficult choice if they were unaware of your wishes. They can relieve your loved ones by sparing them the guilt associated with decisions for which they do not have to bear responsibility. The process of drafting advance directives is a tool for implementing the law of March 4, 2002, concerning patients' rights, known as the "Kouchner Law," which stipulates that "every person, in consultation with the healthcare professional and taking into account the information and recommendations provided, makes decisions concerning their health." Everyone has the right to refuse or not receive treatment. Despite their importance, the rate of advance directives is low, with only 13% of French people over 50 having written them. This is partly explained by the difficulty of discussing a subject related to end-of-life care. Who can write advance directives? Any adult has the right to write advance directives. It is a right, but not an obligation. Even if a person is under guardianship, they can write advance directives, but this requires prior authorization from the judge or the family council, if one has been established. In this case, the guardian cannot assist or represent her.

When should you write advance directives?

Advance directives can be written at any time in your life. Whether you are in good health, suffering from a serious illness, or have a disability, you have the right to write them.

They are valid indefinitely. However, you have the option to modify them in whole or in part, or even cancel them, at any time. It is recommended to do so in writing in case of modification or cancellation.

Certain life events may be an opportunity to reflect on this, such as the death of a loved one, an illness or its worsening, a change in your living conditions, or a situation exposing you to a risk of accident.

How to write advance directives?

Advance directives must adhere to certain formalities to be valid. They must take the form of a written document, which must be dated and signed by you. This document must include your full name, as well as your date and place of birth. The document can be handwritten or typed.

There are several options for the format:

You can write them on a plain sheet of paper.
You can use a form. Some healthcare facilities may provide one.
The Ministry of Labour, Health and Solidarity provides templates. Two templates are available, adapted depending on whether you are in good health (template B) or have a serious illness and believe you are nearing the end of your life (template A). Using these templates is not mandatory, but it ensures that the expression of your wishes meets the regulatory validity requirements and can help you through this difficult process. Templates are available online.

If you are physically unable to write and sign your advance directives yourself, but are able to express your wishes, you can ask someone else to write them for you. This must then be done in your presence and in the presence of two witnesses. If you have designated a trusted person, this person must be one of the two witnesses. These witnesses must attest in writing that the document accurately reflects your wishes. Their attestation must state their full name and their relationship to you (sibling, friend, etc.). This attestation must be attached to the advance directives.

It is strongly recommended to talk when drafting your advance directives. You can discuss this with:

Your doctor. He will be able to explain the usefulness of advance directives, what could happen to you in the event of a serious accident or progression of your illness, the possible options at the end of life (therapeutic decisions, technical procedures) and the role of the trusted person.
Your close friends or your family. Although you can write them without discussing it with them, dialogue can be constructive and reassuring.
Your caregivers, professionals in the medical, social, and healthcare sectors.
Your trusted person, if you have designated one.
A person who helps you communicate.
A patient or user association, a volunteer caregiver, a spiritual advisor, or a minister of religion.

These discussions can help you refine the content of your advance directives, particularly by providing more precise information about the illness and its progression, possible treatments, and by allowing you to express your values and your vision of life. If you are ill or at the end of life, your directives can be adapted and made more precise through these discussions with healthcare professionals. You can even create a personalized care and support plan with your doctor.

Once written, it is advisable to review your directives from time to time, as you may change your mind about their content.

Directive Directive Template Advance Directives

You can use this advance directives template.

What is the content of advance directives?

The content of advance directives is strictly personal and confidential. It must be as precise as possible to guide the medical team. It is limited to end-of-life treatments and medical procedures. This is neither a will nor a document for funeral arrangements.

In your advance directives, you can indicate your wishes regarding:

The initiation or discontinuation of cardiac and respiratory resuscitation.
Treatments you may be concerned about, such as a feeding tube, respiratory assistance (breathing tube), connection to a kidney dialysis machine, or surgery.
Artificial maintenance of your vital functions. If your life is being maintained only artificially, you can indicate whether you wish these treatments to continue or be discontinued.
Deep and continuous sedation until death if you have chosen to discontinue life-sustaining treatments. Sedation is a deep and permanent sleep. It may be requested to avoid suffering when life-sustaining treatments are withdrawn, or if your suffering cannot be relieved and you are at risk of dying quickly. If you choose to stop treatment, you can specify whether you accept or refuse this sedation. Your expectations regarding palliative care. Palliative care aims to treat physical and/or emotional pain, as well as other manifestations of discomfort (breathing difficulties, anxiety). It is important to note that care aimed at relieving pain and other discomfort is a priority for healthcare professionals and will be provided to you without fail, unless you specify otherwise in your advance directives. End-of-life conditions, such as your preferred location (at home, in the hospital, etc.), the presence or absence of certain people, or spiritual support, can also be included. More broadly, you can express your beliefs, values, preferences, what you fear most, or any information that may help ensure your dignity is respected by the medical staff. If you are in good health, you can also state your wishes regarding what you do not want at the end of your life, or what you would want in the event of a very serious accident, a prolonged coma, or severe after-effects or disability. If you are ill or nearing the end of your life, your advance directives can be more tailored and specific, addressing, for example, your wishes regarding the treatment of an acute episode whose sole purpose would be to prolong life. In short, your advance directives should contain what will replace your wishes if you become unable to speak. How to make your advance directives known and kept safe? It is essential that the existence of your advance directives be known and that they be easily accessible to healthcare professionals should you become unable to express your wishes. If your advance directives cannot be easily accessed, the medical team will refer to the testimony of your designated representative or loved ones. You must inform your doctor and loved ones of the existence of your advance directives and where they are kept. Several options are available to you for storing and making them accessible: Save them in your shared medical record (My Health Space). You can save the document itself or simply indicate its existence and location, as well as the contact information of the person who holds it. This digital record can be consulted by healthcare professionals with your consent. Entrust them to your primary care physician or another doctor. They will be kept in your medical file.
Give them to a healthcare facility if you are hospitalized for a serious illness, or to a nursing home if you are admitted there. They will be added to your patient file.
Give them to your trusted person, a member of your family, or a close friend. If you choose this option, you can mention their existence, location, and the identity of the person holding them in your medical file. It is important to inform this person that their contact information may be included.
Keep them at home. In this case, it is recommended that you carry with you an indication of their location (for example, on a small, easily accessible map).

You can give copies to several people.

If you modify or cancel your advance directives, it is important to inform the people who had them and give them the new document if you have written one. If they were recorded in My Health Space, you can simply save the new ones; only the most recent document will be taken into account. If they were in a medical file, request the deletion of the previous ones.

In what cases are advance directives applicable?

Advance directives are a right, not an obligation. They are not applicable if you are able to communicate and express your wishes. As long as you are able to express yourself, your advance directives will not be consulted. However, if you are unable to express your wishes (following a serious illness or accident, a coma, profound cognitive impairment, etc.), the healthcare professional has a duty to seek them out and respect them. Since the law of April 22, 2016 (known as the "Claeys-Léonetti Law"), advance directives are binding on the physician before initiating any investigation or treatment. They take precedence over any opinion of your designated representative or a close relative. The physician must be aware of them and respect them. If your medical situation does not exactly match the circumstances described in your advance directives, the doctor will seek to ensure that the care is as close as possible to your wishes by consulting other opinions.

However, even though they have binding value, there are exceptions where advance directives are not required:

In the event of a life-threatening emergency (for example, following a sudden accident requiring immediate resuscitation). In this case, they are only binding for the time necessary to fully assess the situation.
When the advance directives appear manifestly inappropriate or inconsistent with the medical situation.

In these exceptional situations where the physician decides not to apply the advance directives, the decision must be made through a collegial procedure. This involves consulting at least one other physician and, if applicable, the healthcare team. The collegial decision is mandatory. It must be recorded in the medical file and brought to the attention of the trusted person, or failing that, the family or a close relative.

What happens in the absence of advance directives?

If you are no longer able to express yourself and Even if you have not written advance directives, the law stipulates that the medical team must still try to ascertain your wishes. In this case, the doctor will first consult your designated trusted person, if you have one. If you have not designated a trusted person, they will gather statements from your family or loved ones to determine your wishes. The doctor will make a decision regarding treatment after consulting another doctor and in consultation with the healthcare team. The goal is to avoid treatments that they would consider unreasonable, unnecessary, disproportionate, or that would only serve to artificially prolong your life. In all cases, even in the absence of advance directives, comfort care and treatments (pain management, respiratory difficulties, anxiety, psychological distress) will be continued and intensified if necessary. The primary objective of healthcare professionals is to ensure your well-being and that of your loved ones, and to allow for a pain-free end of life. If the administration of deep and continuous sedation until death is being considered (in certain cases provided for by law), this decision will only be made after consultation with another doctor and after obtaining confirmation of your wishes from your designated representative, or failing that, from your family or loved ones. The goal is for this sedation to be as close as possible to your wishes.

The Key Role of the Trusted Person

Appointing a trusted person is a right available to every adult, although, as with advance directives, it is not mandatory. This person plays a crucial role if you are no longer able to express your wishes, and their appointment is often the occasion for, or the result of, considering advance directives.

The trusted person can be a relative, a friend, a close acquaintance, or even your attending physician. It is essential that they have given their consent to assume this role. Their appointment must be made in writing, dated and signed by both you and the trusted person. If you have difficulty writing, two people can attest in writing that the appointment accurately reflects your wishes. The designation can be modified or revoked at any time in writing.

The role of the trusted person is multifaceted:

Support role when you are able to express yourself: they can support you in your healthcare procedures, help you with your decisions, and attend medical consultations in your presence (they do not replace you). If you wish, they can review elements of your medical file in your presence. They have a duty of confidentiality regarding medical information and your advance directives.
Referent role with the medical team if you are no longer able to express your wishes: they are the person consulted first by the medical team regarding the implementation, continuation, or discontinuation of treatments. She receives the necessary information to be able to express what you would have wanted.

The trusted person acts as your spokesperson. She must accurately and faithfully reflect your wishes and will, not her own. Her testimony carries significant weight and takes precedence over any other testimony, including that of your family members or other loved ones.

She plays a key role in communicating your advance directives to the doctor. It is important that she is familiar with them, and it is recommended that you entrust them to her if you have written them. If she does not have them, she will indicate where they are kept or who has them.

It is important to emphasize that the trusted person is not responsible for making decisions concerning your treatments; this responsibility belongs to the doctor. She conveys your wishes, desires, and beliefs to inform the medical decision. They can act as a liaison with your family, although this may involve facing some resistance from them if their wishes differ from yours. The trusted person does not necessarily have a specific role outside of your health and is not necessarily the person to be notified in case of emergency or death. It is essential to inform your trusted person of their responsibilities, to discuss them so they fully understand your choices and wishes, and to ensure they are aware of the importance of their role and the potential difficulty of their task. As with advance directives, it is very important that healthcare professionals and your loved ones are informed that you have appointed a trusted person and know their contact information. The designation document should ideally be included in your medical file or that of the healthcare facility.

Revising and Cancelling Advance Directives

Your advance directives are not set in stone. They are revisable and revocable at any time and by any means. You can modify them in whole or in part, or cancel them. It is recommended that these modifications or cancellations be made in writing.

The last page of the advance directive templates offers a section specifically dedicated to modifications or cancellations. If you wish to modify your directives, the simplest way is to write new ones.

It is essential to inform the people who held your previous directives (doctor, trusted person, relative, healthcare facility) of the modification or cancellation. If they were saved in My Health Space, saving the new ones is sufficient, as only the most recent document is taken into account. If they were in a medical file, request the deletion of the old versions. If you cannot write the modifications or cancellation yourself, the rules are the same as for the initial drafting: you can dictate to someone in front of two witnesses (including your designated trusted person, if applicable), who will attest in writing that it accurately reflects your wishes. In conclusion, drafting advance directives is a fundamental personal step to ensure that your wishes regarding your end of life are respected should you one day be unable to express them yourself. It is your right and a valuable tool to guide the medical team, ease the burden on your loved ones, and ensure an end of life in accordance with your values. Although the subject is sensitive, talking with your doctor and loved ones can greatly facilitate this process.