Death, Dying, and End-of-Life – temporality and decision-making in precarious contexts
We are happy to invite you to a seminar on “Death, Dying, and End-of-Life – temporality and decision-making in precarious contexts”.
The seminar takes place at the University of Copenhagen, at CSS, room 5.0.22, on Thursday the 6th of February 2025, from 13.00-15.30.
Professor Sylvie Fortin is visiting the Center for General Practice, CSS. Sylvie is an anthropologist from The University of Montreal, Canada, and she will present her long-term research on end-of life issues at the seminar.
Also, we will listen to two other presentations by postdoc Hanne Bess Boelsbjerg from the University of Aarhus and associate professor Iben M. Gjødsbøl from The University of Copenhagen, IFSV, and their research on death and dying.
We hope to see both you who are already actively engaged in this field and you who are curious and interested in learning more. We see this as a theme that cuts across traditional disciplinary boundaries and invites perspectives from both humanities, social sciences and health sciences.
Program:
13.00 – Brief presentation and introduction to the seminar
13.10 – Sylvie Fortin: Good and Bad Deaths or Dying as a Temporal Sequence
13.50 - Questions and a brief discussion
14.10 – Hanne Bess Boelsbjerg: When is death the best outcome?
14.35 – Iben M. Gjødsbøl: Personal prognosis: Foretelling death with AI in clinical practice
15.00 – Final discussion based on all presentations
15.30 – Concluding remarks
We look forward to seeing many of you and to inspiring talks about core human issues.
Abstracts of presentations
Professor Sylvie Fortin: Good and Bad Deaths or Dying as a Temporal Sequence
Based on pre-pandemic research conducted in Montreal among relatives who supported a child, an adult, or a senior through illness and end of life, this paper discusses the time of dying as a temporal sequence. Identified as the (long) time of illness, the time of end of life (the hours or days preceding death) and the time of death, each time in this temporal sequence had a bearing on whether a death was perceived as good or bad by the over 100 relatives we met with. The end-of-life trajectories we documented bring into question the elements that contribute to the many-sided notions of good or bad deaths as they intersect without offering unambiguous points of reference. When people refer to a bad death, are they referring to the time of illness, the time of end of life, or the time of death? The imbalance between these different times or, on the contrary, their concordance gives rise to the perceptions of a bad death or a good death that are at the heart of the “dying with dignity” discourse.
Postdoc Hanne Bess Boelsbjerg: When is death the best outcome?
Decisions about sustaining or withdrawing treatment in the care of patients with severe brain injury after suffering a stroke, a cardiac attack, or a severe trauma are difficult. Partly because of the uncertainty connected to determining the severeness of the injury and the potential for some recovery of consciousness. And partly because of the intense focus on ensuring survival, which is mostly shared by health care professionals and the relatives. Therefore, discussions about the individual and social consequences of survival only arise later, when it becomes clear that the patient will not regain full consciousness or recover physical or mental function. Based on ethnographic fieldwork at two Danish specialized intensive care facilities offering early neurorehabilitation and interviews with health care professionals and relatives, two cases are selected to illustrate how decisions of sustaining or withdrawing treatment come into question. By following the life stories being told in connection with the two patients, the circumstances for changing the trajectory towards withdrawing treatment are highlighted. This informs the discussion on how death might be a better outcome than survival, which could challenge the obligation to resuscitate or contradict the ideals of intensive care.
Associate Professor Iben M. Gjødsbøl: Personal prognosis: Foretelling death with AI in clinical practice
AI-driven algorithms are increasingly promoted as solutions to challenges in under-resourced and under-staffed healthcare systems. Yet how do AI-driven algorithms touted to forestall healthcare systems’ dystopic future become part of clinical practices in which doctors seek to foretell death with patient-specific, ‘personal’ prognoses? This paper examines the clinical implementation of the PMHnet algorithm designed to predict one-year all-cause mortality risk in patients hospitalized with ischemic heart disease (IHD). First, I uncover the assumptions embedded in the PMHnet algorithm about what constitutes valuable prognostic knowledge. Second, I draw upon ethnographic fieldwork conducted in three cardiology departments in Denmark to re-examine these assumptions. Through empirical examples, I demonstrate that 1) clinicians regularly experience a mismatch between the PMHnet algorithm’s predictions and the clinical reality of their patients; 2) prognosis is a multiple phenomenon established in the social interaction between doctor and patient within a specific institutional framework, and 3) the algorithm’s prognostic knowledge is not directive for clinicians in and of itself. I argue that AI-driven personal prognoses cannot be expected to substitute human labor in a future healthcare system. Rather, prognostication with AI requires clinicians to perform delicate moral work of emplacing and anchoring prognoses to establish meaningful and livable temporal horizons for critically ill patients.