TY  - JOUR
TI  - Life Which Does Not Belong to Itself: The Triad “Child-Parent-Doctor” and Phenomenology in Pediatric Palliative Care
T2  - The Russian Sociological Review
IS  - The Russian Sociological Review
KW  - bioethics
KW  - disability
KW  - incurable diseases
KW  - maternalism
KW  - medical anthropology
KW  - pediatric palliative care
KW  - pathic experience
KW  - empathy
AB  - This paper conceptualizes the experience of the child in need of palliative care. Incurable diseases expose the pathic experience of the body as an object of treatment and care. The child’s life is subject to regulation in clinical or hospice care institutions that arranges the flow of time, routine actions, and communication. This leads to the reduction of the patient’s personality, as if woven into the triad "child-parent-doctor". Articulation of a cognitively intact child’s self is embedded in the strategies of silence and half-truths, finding ways of manifestation in games, conflict behavior, and attempts of separation. The traditional view of doctor-patient communication underlying this difficulty requires revision since it is based on the abstraction from the embodied intersubjective interaction in the triad. A child receiving palliative care does not conform to the normative concept of a rational autonomous patient. This requires ways of conceptualizing the patient’s status as the owner of the pathic experience which manifests itself through the development of the disease. Instead of normative and universalist ethics, a phenomenological and medical anthropological view of "maternalism" is proposed, which points to the socio-cultural ambiguity of the idea of the "innocence" and "immaturity" of the child. The interaction within the triad is cross-cultural, and, hence, requires reconsideration of concepts of individuality, autonomy, and communication.
AU  - Maxim Miroshnichenko
UR  - https://sociologica.hse.ru/en/2021-20-3/510760751.html
PY  - 2021
SP  - 182-214
VL  - 20