The shift toward “internalized” narratives of dying—where the focus moves from the observer’s grief to the patient’s subjective experience—is redefining how literature and medicine address end-of-life care. According to physician and columnist Fanny Nilsson, modern works by authors like Lisa Ridzén and Kjersti Anfinnsen are breaking the historical silence surrounding the loss of autonomy and the physical reality of the dying process.
The Shift from Observer to Subject in End-of-Life Narratives
For decades, literature treated death as a distant threat or a plot device for suspense. Simone de Beauvoir’s account of her mother’s passing, as noted by Fanny Nilsson, reflects a perspective of “horror from the sidelines.” This external view captures the grief of the survivor but often misses the internal state of the dying person.
A new trend in “first-person” dying narratives is filling this gap. In Tranorna flyger söderut, Lisa Ridzén depicts the end of life through the character Bo, a man in rural Jämtland. Similarly, Kjersti Anfinnsen’s trilogy featuring Birgitte, a thorax surgeon in Paris, explores the decline of a high-achieving professional. Both authors shift the lens from the family’s trauma to the patient’s sensory experience.
Did you know? Lisa Ridzén developed the concept for her book after discovering a notebook containing home care service notes following her grandfather’s death.
The Battle for Autonomy in Palliative Care
A recurring theme in these narratives is the terror of losing agency. According to Nilsson, the fear of losing the ability to make small decisions often outweighs the fear of physical pain. Birgitte, in Anfinnsen’s work, expresses a specific dread of “institutional kitchens” and “daily diaper changes,” fearing a state where even paid caregivers stop caring about her as a person.
The language used by healthcare providers can either support or erode this remaining autonomy. Nilsson highlights a critical linguistic nuance in Ridzén’s work: the use of the word “refuses” (vägrar) versus “declines” (tackar nej) in home care logs. When a caregiver writes that a patient “refuses” a shower, it reflects a paternalistic attitude that strips the patient of their final shred of independence.
The Physicality of Decline and the “Clinical Gaze”
Modern narratives are increasingly utilizing “surgical” precision to describe bodily failure. Birgitte views her own decaying body through the lens of a doctor, noting how organs shrink and muscles atrophy. This clinical detachment serves as a defense mechanism for characters who have spent their lives in environments where emotions were discouraged.
These stories also simulate the cognitive experience of dying. Through abrupt jumps and narrative breaks, the authors mirror the onset of memory gaps, extreme fatigue, and hallucinations. Bo’s experience in Ridzén’s novel includes the specific shame of incontinence and the exhaustion that makes the simple act of walking to the bathroom feel impossible.
Visualizing Death: Beyond the Closed Casket
Cultural norms in Sweden often involve closed caskets and cremation, which Nilsson argues effectively hides death from view. However, emerging artistic trends are challenging this invisibility. Photographer Elisabeth Ohlsons’ retrospective at Kulturhuset in Stockholm features a project where Ohlson used a self-timer to take a final image of herself while dying.
This approach aligns with the literary trend of bringing the “unpleasant” details of death into the light.
Frequently Asked Questions
How do modern “first-person” death narratives differ from traditional memoirs?
Traditional memoirs often focus on the observer’s grief or the legacy of the deceased. Modern narratives, such as those by Ridzén and Anfinnsen, focus on the subjective, internal experience of the dying process and the loss of autonomy.
Why is the distinction between “refusing” and “declining” care important?
According to Fanny Nilsson, using “refuses” implies a paternalistic view of the patient, whereas “declining” recognizes the patient’s right to exercise their remaining autonomy.
What is the “clinical gaze” in end-of-life literature?
It is the act of observing one’s own bodily decay with a detached, medical objectivity, often used by characters with medical backgrounds to cope with the emotional weight of dying.
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