The relationship between proxy agency and the medical decisions concerning pediatric patients in palliative care: a qualitative study

BACKGROUND: The children’s agency and that exercised by parents and health professionals in palliative care, along with structural limitations imposed by the conditions of inequality, will provide a new perspective from medical anthropology and biomedicine to improve pediatric palliative care in complex therapeutic scenarios. The main purpose of the study was to analyze the ways in which pediatric patients have agency in relation to their parents and palliative care (PC) professionals within the hospital setting, as well as the structural circumstances that constrain said agency. METHOD: A hospital ethnography (by means of non-participant observation and interviews) of the palliative care (PC) unit in a children’s hospital was conducted over the course of six months. A thematic analysis was performed using the ATLAS.ti software . RESULTS: Thirteen cases were reconstructed of underage patients of both sexes patients together with their families; five health professionals were interviewed. The analysis identified the following 6 thematic axes, around which this article is organized: 1. The relationship between the exercise of proxy agency and the medical decisions concerning underage patients. 2. Negotiating agency and support in decision-making. 3. Child autonomy. 4. The experiences of health professionals. 5. Limitations of palliative care. 6. Bureaucratization of palliative care. CONCLUSIONS: In pediatric palliative care, agency is a process whereby different agencies intertwine: lack of pediatric patients ‘agency, the parents’ agency, the parents’ agency as representatives of their children (proxy agency), and the agency of health professionals. The concept of relational agency is proposed, defined as a set of group actions and decision-making centered around the pediatric patients’s agency and the proxy agency. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-021-00723-4.