Everything you need to know about advance directives in France
Advance directives are an important topic that allows everyone to take control of their care pathway, especially in the event of a serious medical situation or at the end of life when one would no longer be able to express their wishes. Although difficult to address, 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 the rights of patients and end-of-life care in France, in particular the Leonetti Law of 2005 and the Claeys-Leonetti Law of 2016, as well as the Kouchner Law of 2002 on patient rights.
Advance directives: What is it?
An advance directive is a written statement in which a person of full age expresses in advance his or her wishes concerning the conditions for continuing, limiting, stopping or refusing treatment or medical procedures in the event that he or she is no longer able to express himself or herself. The purpose of this document is to inform doctors of your wishes.
In unpredictable situations such as a stroke, a road accident, or the sudden worsening of a chronic disease, a person may become unable to express their wishes regarding end-of-life care. The advance directive then replaces the expression of your consent, freely and knowingly given. It allows healthcare professionals to make a decision that is as consistent as possible with your wishes.
The main objective of this document is to avoid situations of unreasonable obstinacy, i.e., treatments that appear useless, disproportionate, or have no effect other than artificial life support. By clearly expressing your wishes, you guide the medical team in their decisions.
In addition to informing physicians, advance directives also play an important role for those around them. They prevent your trusted person, a relative, 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 preventing them from feeling guilty about decisions for which they do not have to assume responsibility.
The process of writing advance directives is a tool for applying the law of March 4, 2002, relating to patient rights, known as the "Kouchner Law," which stipulates that "every person shall make decisions concerning their health with the healthcare professional and taking into account the information and recommendations provided by the professional. Every person has the right to refuse or not to receive treatment."
Despite their importance, the number of people writing advance directives is low, with only 13% of French people over 50 having done so. This is partly due to the difficulty of broaching the subject of end-of-life care.
Who can draw up advance directives?
All adults have the right to draw up advance directives. This is a right, but not an obligation.
Even if a person is subject to a guardianship order, 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 may neither assist nor represent them.
When should advance directives be drawn up?
Advance directives can be written at any time in one's life. Whether you are in good health, have 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 totally or partially, or even cancel them, at any time. It is recommended to do so in writing in case of modification or cancellation.
Certain life events can be an opportunity to reflect on this, such as the death of a loved one, an illness or its aggravation, a change in your living conditions, or a situation exposing you to a risk of accident.
How to write advance directives?
The drafting of advance directives must comply with certain formalities to be valid. They must take the form of a written document, which must be dated and signed by hand. This document must include your last name, first name, as well as your date and place of birth. The document can be handwritten or typed.
There are several options for support:
- You can write them down on plain paper.
- You can use a form. Some health care facilities can provide one.
- The Ministry of Labor, Health, and Solidarity provides templates. Two templates are offered, adapted depending on whether you are in good health (Template B) or have a serious illness and believe you are nearing the end of life (Template A). The use of these templates is not mandatory, but it ensures that the expression of your wishes meets regulatory validity conditions and can assist you in this difficult exercise. Templates are available online.
If you are physically incapable of writing and signing your advance directives yourself, but are capable of expressing your wishes, you can ask someone else to draw them up for you. This must be done in front of you and two witnesses. If you have designated a trusted support person, this person must be one of the two witnesses. These witnesses must certify in writing that the document expresses your wishes. Their attestation must mention their first and last names and their relationship to you (brother, friend, etc.). This attestation must be attached to the advance directives.
It is strongly recommended to discuss when writing your advance directives. You can talk about it with:
- Your doctor. He or she can explain the usefulness of advance directives, what could happen to you in the event of a serious accident or if your illness progresses, the options available at the end of life (therapeutic decisions, technical procedures) and the role of the trusted support person.
- Your close friends and family. Although you can write them without telling them, dialogue can be constructive and soothing.
- Your caregivers, medical, social and healthcare professionals.
- Your trusted support person, if you have designated one.
- Someone who helps you communicate.
- A patient or user association, a support volunteer, a spiritual advisor or minister of religion.
These discussions can help you refine the content of your directives, in particular by providing more precise information on the illness and its progression, possible treatments, and by allowing you to express your values and your conception of existence. If you are ill or at the end of your life, your directives can be adapted and made more precise through these discussions with healthcare professionals. You can even establish a care and support plan adapted with your doctor.
Once written, it's a good idea to reread your guidelines from time to time, as you may change your mind about their content.
Advance directives template
You can use this model of anticpated directives.
What are the contents 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. The subject is limited to end-of-life medical treatments and procedures. It is neither a will nor a document to prepare for funerals.
In your directives, you can indicate your wishes regarding:
- The initiation or cessation of cardiac and respiratory resuscitation.
- Treatments that you might dread, 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 only being maintained artificially, you can indicate whether you want these treatments to continue or be stopped.
- Deep and continuous sedation until death if you have chosen to stop life-sustaining treatments. Sedation is a deep and permanent sleep. It can be requested to avoid any suffering when stopping life-sustaining treatments, or if your suffering cannot be relieved and you are likely to die quickly. If you choose to stop treatment, you can specify whether you accept or refuse this sedation.
- Your expectations of palliative care. Palliative care is aimed at treating physical and/or mental pain, as well as other forms of discomfort (breathing difficulties, anxiety). It is important to note that care aimed at relieving pain and other discomforts is a priority for healthcare professionals and will be given to you unless you state otherwise in your advance directives.
- End-of-life conditions, such as the desired location (at home, in the hospital, etc.), the presence or absence of certain people, or spiritual support.
More broadly, you can express your convictions, values, preferences, what you fear most, or any information that may facilitate respect for your dignity by the medical body. If you are in good health, you can express wishes regarding what you do not want at the end of life, or what you would want in the event of a very serious accident, prolonged coma, sequelae, or severe disability. If you are ill or at the end of life, your directives can be more adapted and precise, addressing, for example, your wishes regarding the treatment of an acute episode that would have no other purpose than to prolong life.
In summary, your advance directives should contain what will replace your word if it becomes impossible.
How to make your advance directives known and maintain them?
It is essential that the existence of your advance directives is known and that they are easily accessible by healthcare professionals on the day you are no longer able to express yourself. If your directives are not easily accessible, the medical team will refer to the testimony of your trusted person or your relatives.
You must inform your doctor and those close to you of the existence of your advance directives and where they are kept.
Several options are available to you to preserve them and make them accessible:
- Save them in My Health Space (shared medical file). You can save the document itself or simply indicate its existence and where it is stored, as well as the contact details of the person who holds them. This digitized file can be consulted by healthcare professionals with your consent.
- Entrust them to your attending physician or another doctor. They will keep them in your medical record.
- Entrust them to a hospital if you are hospitalized for a serious illness, or to a facility for the elderly if you are admitted there. They will be integrated into your patient file.
- Give them to your trusted person, a member of your family or a relative. If you choose this option, you can mention the existence, location and identification of the person who holds them in your medical record. It is important to inform this person that their contact details may be included.
- Keep them with you. In this case, it is recommended to have an indication of their location on you (for example, on a small, easily accessible card).
You can give copies to several people.
If you change or cancel your advance directives, it is important to inform the people who had them and to give them the new document if you have drawn one up. If they were registered in My health space, you can simply register the new ones, but only the most recent document will be taken into account. If they were in a medical file, ask for the previous ones to be deleted.
In which cases are advance directives applicable?
Advance directives are a right and 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 directives will not be consulted.
On the other hand, if you are unable to express your wishes (following an illness or serious accident, 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 undertaking any investigation or treatment.
They prevail over any advice from the trusted person or a relative. The physician must take cognizance and respect them. If your medical situation does not exactly match the circumstances described in your directives, the physician will seek to provide care that is as close as possible to your wishes by consulting other opinions.
However, even if they have binding value, exceptions remain where advance directives do not apply:
- In the event of a life-threatening emergency (for example, following a sudden accident requiring immediate resuscitation). In this case, they are only required for the time necessary for a complete assessment of 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 within the framework of a collegiate procedure. This involves consulting at least one other physician and, if it exists, the care team. The collegiate decision is mandatory. It must be recorded in the medical record and brought to the attention of the person of trust, or failing that, the family or a close relative.
What happens in the absence of advance directives?
If you can no longer express yourself and have not drawn up advance directives, the law stipulates that the medical team must still seek to ascertain your wishes.
In this case, the doctor will consult your trusted person first, if you have designated one. If you have not designated a trusted person, they will gather testimonies from your family or close friends to find out what your wishes were.
The physician will make a decision on treatments after consulting with another physician and in consultation with the care team. The goal is to avoid treatments that seem unreasonable, unnecessary, disproportionate, or that have no effect other than to keep you artificially alive.
In all cases, even in the absence of advance directives, comfort care and treatments (management of pain, breathing difficulties, anxiety, psychological distress) will be continued and reinforced if necessary. The primary objective of healthcare professionals is to ensure your well-being and that of your loved ones, and to allow a pain-free end of life.
If the administration of deep and continuous sedation until death is envisaged (in certain cases provided for by law), this decision will only be taken after consultation with another doctor and after having obtained the testimony of your wishes from the trusted support person, or failing that, from your family or loved ones. The aim is for sedation to be as close as possible to your wishes.
The key role of the trusted person
The designation of a trusted support person is a right available to all adults, although, as with advance directives, it is not an obligation. This person plays an essential role if you are no longer able to express your wishes, and his or her appointment is often the occasion or the fruit of reflection on advance directives.
The designated person of trust can be a parent, friend, relative, or even your attending physician. It is essential that they have given their consent to assume this mission. Their designation is made in writing, dated, and signed by you and by them. If you have difficulty writing, two people can attest in writing that the designation corresponds to your wishes. The designation can be modified or canceled at any time in writing.
The role of the trusted person is multifaceted:
- Support mission when you can express yourself: it can support you in your care procedures, help you in your decisions, and attend medical consultations in your presence (it does not replace you). If you wish, it can review elements of your medical record in your presence. It has a duty of confidentiality regarding medical information and your advance directives.
- Referent mission with the medical team if you can no longer express your wishes: it is the person consulted as a priority by the medical team regarding the implementation, continuation, or cessation of treatment. They receive the information necessary to be able to express what you would have wanted.
The designated person of trust acts as your spokesperson. They must accurately and faithfully reflect your wishes and will, not their own. Their testimony has overriding value and takes precedence over any other testimony, including that of your family members or other relatives.
It plays a key role in transmitting your advance directives to the physician. It is important that they are aware of them, and it is recommended that you entrust them to the physician if you have written them. If they do not have them, they will indicate where they are stored or who has them.
It is important to emphasize that the designated person of trust is not responsible for making decisions regarding your treatments; this responsibility belongs to the physician. They attest to your wishes, desires, and convictions to inform medical decision-making. They can liaise with your family, even if this may involve facing opposition from them if their wishes differ from yours.
The designated person of trust does not necessarily have a specific mission outside of your health domain 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 duties, to discuss with them so that they fully understand your choices and wishes, and to ensure that they are aware of the importance of their role and the possible difficulty of their task.
As with advance directives, it is very important that healthcare professionals and your loved ones are informed that you have designated a trusted person and know their contact information. The designation document should ideally be integrated into your medical record or that of the healthcare facility.
Reviewing and revoking advance directives
Your advance directives are not set in stone. They can be revised and revoked at any time and by any means. You can modify them in whole or in part, or cancel them. We recommend that you make these changes or cancellations in writing.
The last page of the advance directive templates features a section specifically dedicated to modifications or cancellation. If you wish to modify your directives, the easiest way is to write new ones.
It is essential to inform those who held your previous directives (physician, person of trust, relative, healthcare facility) of the modification or cancellation. If they were recorded in Mon espace santé, registering 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 are unable to 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 trusted support person if designated), who will attest in writing that it corresponds to your wishes.
In conclusion, writing advance directives is a fundamental personal step to ensure that your end-of-life wishes are respected if you are ever unable to express them yourself. It is a right that belongs to you and a valuable tool to guide the medical team, relieve 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.
