“I Took It Casually Back Then”

The Concept of Death among Patients in Hungarian Hospice Wards

Abstract

The international and Hungarian hospice movement—primarily drawing on the popular psychological interpretation of Elisabeth Kübler-Ross’s work—conceptualizes dying as a process that, ideally, should lead to "expression," "acceptance," and "resignation." In this context, contemporary authors have pointed out that the hospice movement—like any social movement—requires some form of “enemy image” in order to mobilize solidarity, that is, to awaken society’s sense of responsibility and empathy toward the dying. The notions of death taboo, denial, and repression, they argue, have served this purpose by becoming obstacles to be overcome, or stages to be transcended.

In the summer of 2021, I conducted participant observation for three months as a volunteer psychologist and ethnographer in the hospice ward of a hospital in Western Hungary. After the ward was closed due to the pandemic and subsequently shut down permanently, I continued fieldwork on a weekly basis between April 2023 and June 2024 in another hospice ward located in Eastern Hungary. Since September 2024, I have been working in a children's hospice as a psychologist with families of children requiring intensive care, as well as with grieving parents who have lost a child. Like other ethnographers who have worked with the dying, I sought to understand how the experience of dying takes shape among seriously ill patients receiving hospital-based care in Hungary, and what culturally specific beliefs, interpretations, and practices can be identified through participant observation.

This paper primarily focuses on the phenomenon of "death denial." I examine why, at nearly any point in the system, it is difficult for healthcare professionals to articulate that "nothing more can be done." Drawing on conversations with patients, I explore the possible meanings of avoiding explicit references to death—an avoidance that is often superficially interpreted as mere denial. Based on my field experience, the prolonged process of dying—often lasting several months—rarely follows the clearly delineated stages suggested by stage theories. The recognition of the nearness of death seldom leads to genuine acceptance; rather, it tends to fluctuate, and is less a stable achievement than a temporary and often revisable state of understanding. Acceptance of one's own death is further complicated by the realization that the end of individual existence simultaneously entails the irreversible loss of loved ones and of certain identity-defining roles. Furthermore, analysis of communication with relatives reveals that the anticipation of loss and the verbal acknowledgment of the possibility of death are, for many, equivalent to withdrawing hope, assigning the patient a "dying identity," and ultimately assuming responsibility for managing and defining both the life and death of the patient.