Abstract
BackgroundThe 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.MethodA 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 .ResultsThirteen 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.ConclusionsIn 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.
Highlights
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
Five narratives of palliative care (PC) unit professionals were reconstructed from interviews and inhospital observation, of these all were female, age group was 25 to 40 year; two psychologist (Ps), one pediatrician (P), one general physician (GP) and one social worker (SW)
Other structural family-related aspects are lack of financial resources for health care, unhealthy family dynamics, and the distance to the palliative care centers. These limitations notwithstanding, we identified certain facilitating factors to palliative care: a relationship based on respect and dialogue; an empathetic care that can meet the needs of the pediatric patients and their families; a committed interdisciplinary group; out-of-hospital networks aimed at solving certain structural problems of the families and the health care system; and ongoing support using telemedicine
Summary
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 situation began to slowly change, spurred by the Mexican government’s publishing of a resolution in 2014 declaring “the compulsory nature of a comprehensive palliative care management services, as well as the processes set forth in the Guide for the Comprehensive Management of Palliative Care in Pediatric Patients” [3] This resolution marked the moment when the children suffering from incurable, progressive, and multifactorial diseases-not always oncological-were able to receive some overdue attention. It helped the pediatric medical community in Mexico to adjust their approach to include patient follow-up during the course of the disease, without the limitations of the disease duration or stage
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