Living with Dying in France: Contemporary French Writing about End-of-Life Care

THE FRENCH NATIONAL HEALTHCARE system enjoys a reputation for excellence, both in terms of outcomes for patients and the accessibility of care. However, the 2016 overview of French health policy put out by the Organisation for Economic Co-operation and Development raises concerns about the appropriateness of some care in the French healthcare system, calling for better engagement of patients in the decisionmaking process about treatment options.¹ This article examines the representation of terminally ill patients' experience of the French healthcare system in two recently published autopathographical narratives.² In Réparer le monde, Alexandre Gefen defends the idea that twenty-first-century French literary culture "a vu l'émergence d'une conception que je qualifierai de 'thérapeutique' de l'écriture et de la lecture, celle d'une littérature qui guérit, qui soigne, qui aide, ou, du moins, qui 'fait du bien.'"³ Gefen's point is valid for the two authors whose work will be explored here, and can also be applied fruitfully to French society more broadly and its medical system as it accompanies its citizens at the end of life. "Je suis vouée simplement à imaginer une écoute post mortem et me satisfaire d'avoir été un peu utile," says Marie Deroubaix, pressing for legal reform to euthanasia laws in France through her book 6 mois à vivre: J'ai choisi de mourir dignement (2012).⁴

In Le tout dernier été (2017) Anne Bert writes to free herself from the norms of her culture as regards dying: "j'ai décidé d'écrire sur ma fin de vie afin de me réapproprier ce fantasme si intime du mourir, en m'affranchissant de celui que notre culture et la loi française nous imposent."⁵ These authors' writing about end-of-life care and their wish to be euthanized challenges normative attitudes to medical care and demands reflection on best practices. This article outlines the strengths and weaknesses of the French healthcare system from the point of view of those who use it at the end of their lives, the better to reflect critically on its current state and inform its future development. The aim here is to elucidate distinctly French attitudes to the contemporary experience of final illness, dying, and death in that country.

Many parental stories about a terminally-ill child present a positive image of the French system available to support the patient and their family in managing end-of-life care.⁶ Such is not the case with Bert and Deroubaix's accounts of dealing with terminal illness. At fifty-six, Deroubaix was diagnosed with lung cancer, which quickly spread to her brain and became inoperable. Her posthumously published text includes a preface, occasional comments, and a final chapter by her husband Bertrand, and was the bestseller on Amazon in France the week after it was published.⁷ Bert was fifty-seven when diagnosed with amyotrophic lateral sclerosis, a type of motor neurone disease that rapidly brings on paralysis; she completed her text and it was published two days after she died.

While different in style, both authors' works criticize similar aspects of the French healthcare system: doctors' reluctance to speak plainly about their illnesses; the power imbalance in the relationship between patient and doctor; and the lack of choice in the management of their death on French soil. Deroubaix must also deal with doctors' preference to pursue treatment despite her terminal diagnosis. Deroubaix and Bert recount their experiences of being diagnosed during what Whitehead and Woods call the "primal scene" of the doctor-patient encounter, their treatments and decisions about end-of-life care.⁸ Experiencing what Foucault calls the "medical gaze," which separates their sense of self from their ill bodies, is a traumatic experience that their texts try to mitigate.⁹

The experience of one's own terminal illness requires entry into new spaces (such as clinics, hospitals, doctors' surgeries), the development of new relationships with healthcare providers, and a new phase in relationships with community, friends, and loved ones and with the unexpectedly very finite self. Susan Sontag...