Advanced directives : supporting the resident in their end-of-life choices

In France, less than 20 % of the population has written advanced directives. In nursing homes, despite a context where these documents are particularly useful, the proportion often remains very low — not because residents do not want to express their wishes, but because no one has offered them the opportunity to do so, or because the process seems too complex or too frightening.

Advanced directives are, however, an invaluable tool — for residents who want to maintain control over their care beyond their ability to express it, for families who will not have to bear the burden of difficult decisions alone, and for medical teams who will have a clear compass in critical decision-making moments.

1. What are advanced directives?

Advanced directives are a written document in which a person expresses their wishes regarding the conditions of their end of life and the medical decisions to be made if they are no longer able to express them themselves. They can concern : the treatments they wish or do not wish to receive, their wish to be resuscitated or not, their preference to die at home or in a facility, their attitude towards deep sedation, their wishes regarding palliative care.

They are written in advance, when the person is still able to do so — hence their name. They can be written at any time, modified or revoked at any time, and have no limited validity since the Claeys-Leonetti law of 2016.

2. Their legal value: binding since 2016

Before 2016, advanced directives had a consultative value — the doctor had to take them into account but was not obliged to respect them. The Claeys-Leonetti law of February 2, 2016, radically changed this status : advanced directives are now binding on the doctor, except in very specific and strictly regulated cases.

The doctor can only deviate from the directives if they believe that they are manifestly inappropriate or not in accordance with the medical situation — and this decision must be collegial, documented, and justified in the file. Outside of these exceptional cases, the directives apply. This is a fundamental change that gives residents real control over their end of life — provided that these directives exist and are accessible.

3. What advanced directives can express

Advanced directives can be very general (“ I do not wish to receive cardiopulmonary resuscitation in case of cardiac arrest ”) or very detailed. They can express values (“ for me, quality of life is more important than length of life ”), concrete wishes (“ I do not wish to be hospitalized in an emergency, even if my condition suddenly worsens ”), or specific refusals (“ I refuse any artificial nutrition and hydration if I am in a vegetative state or advanced dementia without possible communication ”).

They can also express non-medical wishes — related to the environment (“ I wish to die in my room, with music I love ”), to the people present (“ I wish for my daughter to be notified as soon as my condition deteriorates, even at night ”), or to rituals (“ I wish for my religious beliefs to be respected during my final care ”).

4. How to write them: format, content, template

Advanced directives must be written in French, on plain paper or on the official form provided by the Ministry of Health. They must be handwritten or typed, signed, dated, and include the name, first name, and date of birth of their author.

They do not need to be written by a doctor or notarized. A person can write them alone, assisted by a relative, a caregiver, or a doctor. In nursing homes, the coordinating doctor or the coordinating nurse can assist in this process — explaining the options, answering questions, helping to articulate wishes that are sometimes difficult to put into words.

5. Where to keep them and how to make them accessible

Advanced directives that exist but cannot be found at the critical moment are useless. Preservation and accessibility are as important as writing them.

In case of transfer to the hospital, the directives must accompany the resident — in the liaison form sent to the emergency services. A directive left in the nursing home room while the resident is being resuscitated in the emergency room is a directive that has served no purpose.

6. The trusted person: a distinct role

The trusted person is often confused with the person to be notified in case of emergency or with the legal heir. These three roles are distinct and do not necessarily overlap.

The trusted person is the one whose opinion is consulted by the doctor when the resident can no longer express their wishes — and whose opinion takes precedence over that of the family in medical decisions. They can be a spouse, a child, a close friend, a neighbor — anyone whom the resident trusts to advocate for their values and wishes. They must have explicitly accepted this role and know where the advanced directives are located.

The designation of the trusted person is done in writing, signed and dated. It can be revoked at any time. It is distinct from the advanced directives — but the two documents ideally complement each other.

7. Upon admission: the conversation to have

Admission to a nursing home is a key moment to address advanced directives — not because the resident is going to die tomorrow, but because it is the moment when they are still able to think and express their wishes, before the illness reduces this capacity.

This conversation should be offered — not imposed. It should be presented positively (“ it’s a way to ensure that your wishes will be respected ”) and not dramatized. It can take place in several stages — an initial mention during the admission interview, a follow-up a few weeks later when the resident has settled in and feels more secure.

8. The particular case of residents with dementia

The question of advanced directives for residents with dementia is complex — and often addressed too late. Ideally, directives should be written before the onset of severe dementia that impairs discernment. Many residents arrive in nursing homes with already advanced dementia and without advanced directives — this is a difficult but common situation.

For residents with mild to moderate dementia, the ability to write advanced directives may still be present — even if it must be assessed carefully. A person with mild dementia can perfectly express clear and coherent wishes about their end of life. Dementia does not equate to total incapacity.

For residents whose capacity is very limited, it is the trusted person who takes over — and the caregiving team who reconstructs the values and wishes of the resident based on what they know about them, their behaviors, their reactions, their history.

9. When directives conflict with family wishes

There are times when a resident's advanced directives contradict what their family wants. A resident has expressed in their directives that they do not wish to be resuscitated — and their family demands that “ everything be done ”. This conflict is painful for everyone and must be managed with great care.

The legal answer is clear : the resident's directives take precedence over the family's wishes. But the human response is more complex : the family is experiencing grief, a loss of control, a situation they often did not anticipate. They need to be heard, even if their request cannot be fulfilled. The family meeting, led by the coordinating doctor with the presence of the coordinating nurse, is the appropriate space for this difficult conversation.

10. Building a culture of advanced directives in nursing homes

Nursing homes with the highest rates of written advanced directives are not those that systematically distribute forms upon admission. They are the ones that have built a culture of dialogue about end of life — a culture where it is normal, accepted, and kind to talk about death, fears, and wishes.

This culture is built over time — through training for teams, through collective discussions about end of life, through examples of well-written directives, through testimonies from residents or families who have experienced how these documents helped. It is also built by the position of the director and the coordinating doctor — who show that this subject is taken seriously, that it is important, and that it deserves time and attention.