Talking about the end of life

Why did you become interested in end-of-life issues and oncology-palliative communication? And what are they?

I came across my research topic, the end-of-life of cancer patients, during my Master 2 thesis at the École de Journalisme et de Communication d'Aix-Marseille Université (School of Journalism and Communication). This dissertation focused primarily on interactional communication within a palliative care service (between caregivers, between caregivers and patients). However, during the course of my observations, I identified a communication issue that lies at the interface between oncology and palliative medicine, and which has a major impact on the care trajectory of cancer patients. To put it very simply, when a patient becomes incurable, the oncologist finds it difficult to tell him or her. He actively pursues treatment, and tries to maintain his patient's hope through reassurance. At some point, however, the progression of terminal symptoms requires palliative care. Palliative caregivers are then charged with making the patient understand that the terminal phase has begun, and that he or she is going to die. This difference in therapeutic approach to the end of life generates difficulties in the oncology-palliative professional articulation required to support incurable patients. Armed with this research problem, I therefore continued with my thesis under the supervision of Brigitte Juanals, between 2017 and 2021 at the Centre Norbert Elias (EHESS/CNRS/Université d'Avignon/amU).

Can you explain the asymmetry that exists between oncology (treatment that we hope will be curative) and palliative care (care that aims only to comfort the patient, often in the end-of-life phase)? And the repercussions this can have on communication?

The announcement of cancer instantly links the patient to the notion of death. This "cancer/death" association places the oncologist, who announces the pathology, as the sole holder of the therapeutic solution for survival. This therapeutic solution is based on active treatments resulting from extraordinary scientific advances since the second half of the 20^th century. These scientific discoveries are themselves part of a broader societal evolution: health is now a supreme value to which everyone aspires. In this sense, oncology is perfectly in line with contemporary societal standards.

Palliative medicine, on the other hand, embodies values rooted in Christian culture. This implies a strong ideological stance: refusal of any medical act that could accelerate death, refusal of unreasonable obstinacy (i.e. stopping certain chemotherapies deemed too aggressive given the non-existent benefits), and an essentialist conception of the end of life. This means that the terminal phase is considered a precious time, during which the patient, helped by the palliative team, settles certain matters before dying (emotional, financial, spiritual, etc.). This compassionate approach to the end of life runs counter to contemporary systems. In a palliative care service, death is not a taboo; it is prepared for so that conditions are as peaceful as possible.

The difference between these two approaches to the end of life creates "value conflicts" between oncologists and palliative care physicians. These conflicts have an impact on patient care, insofar as palliative care is not, or only rarely, requested by the oncologist, who thus avoids having his or her own care questioned.

How do you study these communicative approaches in hospitals?

My ethnographic approach to communicative issues naturally entails a certain investigative methodology. I carry it out with multi-site observations in hospital settings (multidisciplinary oncology consultation meetings, palliative team meetings, patient/doctor appointments, daily work monitoring in different departments, etc.), as well as during interviews with the players in the field (doctor, patient, administrative staff). From the identification of the communication problem, the iterative path of my research refines the understanding of the phenomena observed. I'm interested in the discourses and practices of caregiving, as well as the different contexts in which these discourses and practices evolve, since interactions within a hospital are always part of a wider social framework. Analysing and taking account of this complexity then enables us to envisage info-communication systems adapted to the issues identified, in an attempt to resolve them.

What impact would you like your research to have in the current context of reflection on end-of-life issues?

For years, political, media and public debate has focused on the right to active assistance in dying. Admittedly, this is an important issue for certain patients in particularly painful end-of-life situations. However, end-of-life issues are not limited to euthanasia. In France, almost 160,000 people die of cancer every year. The vast majority of these patients are not concerned by a request for aid in dying. On the other hand, they may be directly - and strongly - impacted by problems of professional articulation between different medical specialties in the care trajectory of their disease. These "deficiencies" in care (with regard to the patient's needs) affect not only the dying patient in the last moments of his or her life, but also his or her loved ones, who will be left for many years with the memories of a chaotic end of life. To answer your question, I'd say that I'd like my research to contribute to improving the oncology-palliative process of caring for incurable patients.