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

Abstract

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.

Bereaved Caregiver Perspectives on the End of Life in Pediatric Patients With Ventricular Assist Devices

“…In the United States, caregivers have surrogate decision-making responsibility (9)(10)(11)(12)(13)(14). As displayed with this study's adolescent patient, a mature child's opposition to a significant intervention can cause distress for the caregiver and provider team (9,13,15).…”

“…Caregiver-child accord influenced caregivers’ regret associated with making decisions for their child. In the United States, caregivers have surrogate decision-making responsibility (9–14). As displayed with this study’s adolescent patient, a mature child’s opposition to a significant intervention can cause distress for the caregiver and provider team (9, 13, 15).…”

Parental agency in pediatric palliative care

“…In pediatrics, medical staff must seek to maximize possible benefits and minimize possible harm to ensure a proper standard of care for parents and their children (Pestian et al, 2020). On the one hand, the term "vulnerable persons," which originates from research involving human subjects, applies to pediatric palliative care encompassing the family as a whole, that is, not simply the parents alone but rather all family members engaged in the caring process (Fay et al, 2021). They are vulnerable because they care about their close relatives with whom they are emotionally connected.…”

“…Parental care of a child places the parents in a position of power and control over the life and health of that child. Fay et al (2021, p. 27) emphasized the importance of agency as a process involving children (a maturing process), parents as representatives of their children (proxy agency), and medical staff. In the case of parental agency, the authors mention such significant factors as parental replacement of children in the decision‐making process as well as parental management of children's present and future treatment.…”

Ethical Issues in Care and Treatment of Neuronal Ceroid Lipofuscinoses (NCL)–A Personal View

“…Choices of adults regarding the end of their lives are liberally discussed at present, while legal frameworks remain controversial (6,7). Decision-making capacities of children and decisionally vulnerable adults are even more delicate, but must not be neglected (8,9).…”