Credits: LABORDE / Wikimedia Commons, CC BY-SA 3.0.
In January 2026, the publication of the book Is There Life After Your Death? by Thomas Stern, widower of Catherine Laborde (who died on January 28, 2025 on Yeu Island), sparked a family dispute and a nursing assistant complaint at the center of the case. Beyond this specific situation, the episode shines a light on three issues: family caregivers, end of life, and privacy after death.
Family Caregivers, The Quiet Backbone Of Home Care
France is aging, aging in place is encouraged, and care jobs are short-staffed. In between are the loved ones: spouses, children, parents, friends. The latest available public data paint a massive picture: in 2022, 7.1 million people were family caregivers in metropolitan France, or 11% of the population aged 5 or older.
That number does not tell the whole story. Informal help is not just lending a hand. It is often threefold: emotional support, day-to-day tasks, and sometimes financial help. Many caregivers juggle all of these, at the cost of a gradual shift: you start out helping out, and end up organizing, coordinating, negotiating, carrying the load.
The burden, above all, is unevenly distributed. In three out of ten cases, the help is provided with no backup at all: no other loved one, no professional, no volunteer. Among spousal caregivers, this isolation is even more common: 61% say they have no co-caregiver. Isolation then becomes a risk factor: exhaustion, social withdrawal, psychological vulnerability.
Finally, caregiving is not just a retiree issue. Six out of ten caregivers are working or in school. In other words, care has to be managed around work hours, children, commuting, and careers. And that is where the debate moves beyond emotion and into public policy: how much room does work leave for caregiving? And what is a right worth if it is little known or hard to use?
A Still Fragile Status: Leave, Compensation, And Underuse
Over the past few years, the law has recognized caregivers. But it has mostly recognized them in pieces.
The family caregiver leave lets people suspend or adjust their work. It is meant to help care for a relative who is losing independence or has a disability. In the absence of a more favorable collective agreement, its maximum duration is three months, renewable, up to one year over an entire career. On paper, the framework exists. In real life, everything depends on the employer, the job, and the financial situation.
To offset part of the income loss, the daily caregiver allowance (AJPA) can be paid (by CAF or MSA) to people who temporarily reduce or stop working. As of January 1, 2025, the reference amount is €65.80 per day (and €32.90 per half-day), up to 22 days per month. The cap has been expanded: up to 66 days per care recipient, for up to four people, or 264 days over a career.
These figures reveal a paradox: the state names caregivers, but financial support is still designed for short, broken-up interruptions, often inadequate for long illnesses. Hence the repeatedly observed underuse: many people do not know these programs exist. Others cannot afford to use them. Some fear the professional impact of a long leave.
So the core issue is not just budgetary. It is social: caregiving has become a mass reality, but it is still treated as an exceptional event.
End Of Life: What The Law Says, And What People In France Know About It
The controversy around a caregiving account also points to a very concrete question: how is end-of-life care framed in France?
The reference framework remains the law known as Claeys-Leonetti (February 2, 2016), which strengthened patient rights: refusal of unreasonable treatment, access to palliative care, stronger health care proxy rights, and the creation of a right to deep and continuous sedation until death, combined with pain relief, in specific situations (refractory suffering with a short-term life-threatening prognosis, or stopping life-sustaining treatment likely to cause unbearable suffering). The procedure is collegial and recorded in the medical file.
Two tools are central.
First, advance directives are a written statement. Any adult can use them to spell out their wishes for the end of life. They apply if the person can no longer speak for themselves. Their force is strong: in principle, they bind the doctor, except in cases provided for by law.
Second, the health care proxy: the person who speaks for the patient when the patient can no longer speak. That testimony carries decisive weight.
The problem is not the rule but how widely it is known. Public assessments and available surveys agree: these tools remain largely unknown. One figure sums up the gap: only 18% of people in France say they have drafted advance directives. And yet the issue affects almost every family sooner or later.
Alongside patient rights, there are also rights for those who provide care. Family solidarity leave allows an employee to take time off to assist a loved one. That loved one must be in the advanced or terminal stage of a serious, incurable illness. It may entitle the caregiver to specific compensation, the daily allowance for accompanying someone at the end of life (AJAP), paid by National Health Insurance, with amounts and durations that vary depending on whether the leave is full-time or part-time.
These mechanisms reflect a philosophy: end of life is not only a medical matter. It is also a matter of organization, rights, and preparation. And therefore, of information.
Privacy After Death: Real But Fragmented Protection (And Its Limits)
When a book, film, or article describes an end of life, another boundary appears: privacy.
In law, respect for privacy is a right of the living person. After death, it is not automatically “passed on” to relatives. But that does not mean anything can be published without consequences.
First, relatives may act if they can show personal harm tied to the publication. That includes shock, humiliation, or an intrusion into their own private life. In addition, any harm to the respect owed to the deceased that reflects on them is also taken into account. Case law has said so, notably regarding the image of a deceased person: relatives can challenge its reproduction only by showing the harm they themselves suffer.
Then there is a principle that does not die with the person: respect owed to the human body “does not end with death.” This concept first and foremost concerns remains, ashes, and the burial site. It does not solve everything, but it says something essential: society still demands a form of dignity.
Finally, there is one area where posthumous matters are explicitly addressed: the digital world. The European regulation (GDPR) does not apply to deceased persons. However, French law allows anyone, while alive, to set post-mortem directives. These concern the retention, deletion, and disclosure of personal data. Here, protection is not moral; it is procedural.
In other words: postmortem privacy is not a single shield. It is a patchwork — bodily dignity, harm to relatives, digital data — that leaves a gray area. That is where conflicts take hold.
Telling The Story Of End Of Life: Between Public Interest And The Risk Of Exposure
Caregiving stories can serve a social purpose. They describe exhaustion, doubt, and invisible tasks. They make audible what caregivers often experience behind closed doors.
But usefulness is not enough to erase the risks.
First risk: identification. As soon as a patient, caregiver, place, or scene becomes recognizable, intimacy changes shape. It becomes public material, interpreted, discussed, archived.
Second risk: role confusion. Health care and social care professionals work under a duty of restraint and confidentiality. Putting them on display, even indirectly, can have consequences for their lives and work.
Third risk: the hierarchy of legitimacy. In a family, caregiving is often collective: some are there every day, others handle the paperwork, others grieve in silence. A published account can, intentionally or not, rewrite everyone’s place. It does not just describe; it assigns.
Celebrity makes the equation even more complicated. A public figure stirs up collective affection that can turn against the family: people demand details “to understand,” judge choices, and assign roles. But media familiarity is not consent to exposure.
The Laborde Case, A Textbook Example Without A Verdict
Thomas Stern’s book presents itself as a posthumous letter and as a caregiver’s account, a plea on behalf of loved ones. The text also aims to be a widower’s testimony. It tells the story of Catherine Laborde’s end of life, as she lived with Lewy body disease (Lewy body dementia), a neurodegenerative illness that can involve cognitive fluctuations, attention problems, motor symptoms, and sometimes hallucinations. In this kind of trajectory, those around the person often live through a bewildering alternation: presence and absence, clarity and confusion. Memories, too, fluctuate.
The dispute, publicly raised by Françoise Laborde and Catherine’s daughters, Gabrièle and Pia, targets two things: the timing of the publication and the portrayal of the final months. They denounce a text they consider undignified. They also believe that the end of life was a collective, structured form of care. This was not a story centered on one person.
To that split is added a legal dimension: a nursing assistant who cared for Catherine Laborde filed a complaint, citing in particular alleged harassment and an invasion of privacy. The case is ongoing, the facts are disputed, and no ruling has been issued. Thomas Stern, for his part, says he is “telling his truth” and says he has been summoned.
This specific case really concentrates a broader social tension.
- Recognize caregivers without trapping them in a heroic role, or leaving them alone in the face of long illnesses.
- Make end-of-life law better known. That way, decisions are not made in a rush. It also prevents guilt and confusion.
- Clarify protection of the intimate, especially when the person being described can no longer answer back. In addition, this is crucial when professionals are involved.
The Laborde case offers no solution. It only reminds us that end of life is a moment when everything is fragile: bodies, relationships, words. And that in this fragility, society still lacks clear tools.
What We Can Take Away, Beyond Emotion
The debate tends to collapse into one question: who is right? But the public interest lies elsewhere: how do we keep caregiving from becoming a zone of exhaustion and conflict?
The French blind spot is not a lack of rules. It is the gap between existing systems and actual use.
Informed too late, many caregivers improvise. Poorly supported, they wear down. And when the private becomes a public story, private wounds are compounded by a battle over image.
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