The Asset of Subjectivity: Applying Mujerista Theology and Family Interest Assessment to Case Analysis

Résumé Abstract L’application de deux théories à des contextes complexes permet d’obtenir une analyse de cas plus complète. Ce cas, qui concerne une famille latino-américaine en pédiatrie, nécessite une approche multidimensionnelle pour mieux évaluer les besoins culturellement spécifiques du patient et du système familial. Une approche théologique Mujerista souligne la nature subjective des valeurs familiales et de la sagesse vécue. Cette approche Mujerista ajoute une autre dimension, ainsi qu’un modèle d’intérêt familial, pour la prise de décision médicale. Applying two theories to complex contexts results in a more well- rounded case analysis. This case, involving a Latinx family within pediatrics, requires a multi-faceted approach to better evaluate the culturally specific needs of the patient and the family system. A Mujerista theological approach highlights the subjective nature of family values and lived wisdom. This Mujerista approach adds another dimension, along with a Family Interest Model, for medical decision making. Mots-clés


INTRODUCTION
Applying two theories to complex contexts results in a more well-rounded case analysis. This case, involving a Latinx family within pediatrics, requires a multi-faceted approach to better evaluate the culturally specific needs of the patient and the family system. A Mujerista theological approach highlights the subjective nature of family values and lived wisdom. This Mujerista approach adds another dimension, along with a Family Interest Model, for medical decision making.

CASE
Lucas, 1 a Latino male, was born with Jarcho-Levin syndrome. He went from one Neonatal Intensive Care Unit (NICU) to a higher acuity NICU because he had trouble breathing. Lucas was discharged home after three months but remained at home only ten days before being readmitted for a respiratory infection. The initial goal was to help maintain Lucas' respiratory health and capacity until he was stable enough to have corrective surgery to expand his rib cage and correct his cervical vertebrae. As it was, his lungs could grow at pace with his body's need but because of his neck, Lucas could not safely maintain his airway.
Eventually, the healthcare team recommended a tracheostomy until they could get him to his corrective surgery. Lucas' mom, Sandra, agreed to the procedure and successfully completed trach-training. After several more months, a few stays in the Pediatric Intensive Care Unit, and never being able to wean Lucas to home-ventilator settings, the burden of caring for Lucas in the hospital while also caring for her other toddler, Leo, at home, Sandra recognized Lucas' diminished quality of life. Lucas was no longer playful, he acted agitated when being held, and he had several infections that kept him in intensive care. After each infection cleared, it seemed like Lucas had a lower base line than before the infection. Sandra asked the healthcare team to decannulate Lucas, allowing natural death, saying that he was "tired of fighting."

THEORY EXPLAINED
Two theories can work in tandem to better understand the intricacies of this case. The first is a narrative theory that comes from Mujerista theology (a Latin@ feminist theology) -la vida cotidiana or "everyday life". The second is a theory comes from an ethical assessment framework. I begin by briefly defining these two theories and then describe, in greater detail, how each highlights different aspects of the case.
La vida cotidiana is a narrative theory (or a system of explaining how a narrative functions) that provides a culturally-specific manner to engage and evaluate lived wisdom. When narrating la vida cotidiana we are not simply telling a story to understand the ideas or meanings embedded within the story; instead, we begin to see how lived experience has the capacity to change or shape our theology, our values, our experiences, or the meanings we assign to those experiences. This narrative theory elevates lived experience in a way that puts it at the same level of importance as education, faith doctrines, values, or expert knowledge. It recognizes that, at times, the best course of action emerges through analysis of the seemingly mundane events of daily life, amplifying our learning-by-doing.
The second theory that can help shine light on this case emerges from an ethical assessment framework. The Family Interest Model takes into account the varied positions that a family may take when making choices about medical treatment and care (1). This model highlights how the centre of gravity (so to speak) is different for each family as they weigh the needs of each member of the family and/or as the family as a whole. It accounts for the fact that no family is alike when making a choice. Assessing different models of family decision-making and needs can strengthen the ability to offer a recommendation informed by the family's own constraints, contexts, and circumstances. Arguably, this model also highlights the many, sometimes opposing, needs that a family must grapple with when determining the best course of action for the family and for the patient.
Let me first examine in more detail what it means to narrate la vida cotidiana. In their work with Latin@ women, Ada María Isasi-Díaz (2) and Carmen Nanko-Fernandez (3) identified specialized knowledge emerging from la vida cotidiana, or common, everyday life. 2 Lo cotidiano is an intersectional, hermeneutical, and epistemological position encouraging subjective reflection on the "stuff" that makes up the "shared experience" within daily lives of Latina women (2, p.67). Lo cotidiano is a heuristic device used to understand and solve complex problems in a way that elevates lived experiences and learned expertise. In this framework, subjectivity is key. Subjectivity, within lo cotidiano, is not a detriment to this way of contextual evaluation or learned expertise. Embracing subjectivity is a way of extoling difference while simultaneously resisting individualizing ideals that often make humanity more isolated (2).
Nanko-Fernandez's (3) approach assumes that useful knowledge is embedded in la vida cotidiana. 3 Meanings given to life are constructed from doing the work of life -we know because we do. The subjective narratives and experiences of daily life agitate implied theories and social discourses about what it means to live with a "non-normal" body. Similarly, listening to the stories of daily life, as parents care for their children, can uncover broader concepts about familial and cultural values that might otherwise go unnoticed. The objective of narrating la vida cotidiana is to offer juxtapositions that "interrupt the norm and offer opportunities to entertain new ways" of thinking about our lives and the meanings that we give (3, p.xx).
Narrating la vida cotidiana is not simply telling a detailed life story; it is not a biography or medical history. Graham et al. (4) note that this form of narration extracts the embedded, implicit, values-laden constructs that materialize in the daily routines of parents caring for their children -those stories which might otherwise be overlooked. Asking about the "stuff" that makes up common, everyday life when caring for a child with a complex medical condition generates unique sets of knowledge. Oftentimes these experiences are so routine, write Holland and Ramazanoğlu (5), a "knowing in the doing," that they are "not yet discursively appropriated" (p.73). Healthcare providers and clinical ethicists must ask about the "common" and "routine" sources of knowledge that parents learn, simply because of the cares, tasks, and labour that is part and parcel to the close, every-day interaction with the body of their child.
I now turn to the second theory, one derived from assessing family interests within ethical decisions. In conjunction with knowledge gained from her daily lived experience, Sandra must also evaluate what is in the best interest for her family. This is where the four models described by Groll becomes helpful (1). Groll reminds us that not all families prioritize the same things when making decisions. Through Groll's perspective, taken with la vida cotidiana, we can see that some families may not even know to articulate the "common" or "mundane" things that happen as they care of their child(ren) or they may undervalue the beliefs embedded in the prosaic. Drawing conclusions using a Family Interest Model (1) we know that the right decision for a patient is never ascertained without considering the impact of the decision within a larger familial or societal framework. The Jarcho-Levin syndrome and respiratory infections were particular to Lucas' body but each member of the family, to varying degrees, shared an experience of that illness (6-7). In making a decision about Lucas' care, Sandra must consider all parties involved -her own, Leo, Lucas, their father, her extended family and her in-law's family (the extended families help with transportation, childcare, and spiritual and emotional support).
Sandra had to evaluate her values with regard to determining what it means for Lucas to "be alive" and what it means to be an attentive and well-bonded parent to her son Leo. Sandra also had to consider the contextual constraints of remaining in the hospital with Lucas, far from home, and with limited transportation. Each family member, her values, the values of her family, and the contextual constraints, when examined together, highlight conflicting priorities and points of agreement. Yet, when reading the conflicting priorities and points of agreement through the lens of la vida cotidiana, it becomes possible to see how Sandra and her family prioritize their values.

APPLICATION
First, ethicists must pay attention to the cultural-contextual. The Western-centric training that many clinicians receive can undervalue the lived knowledge gained from daily life. Clinicians should become accustomed to helping families and caregivers Page 148 articulate the wisdom that they have gained through the daily acts of caring for their child. This wisdom is revelatory in unmasking family values, cultural resources, or religious beliefs that foster decision-making. Understanding the "why" of what a family does can help both clinicians and families. Investigating la vida cotidiana is achievable with humble curiosity about daily practice and cares.
Second, clinicians must consider the multiple ways that families weigh varying interests when deciding if procedures, like a tracheostomy, are "manageable." This same weighing of interests is also applicable when a family is making end of life decisions. Clinicians cannot presume that they understand a family's cultural and contextual constraints. Nor should clinicians assume to understand why or how a family evaluates the needs of each member as a part of the whole. Sandra, having cared for both Lucas and Leo, had conducted a months-long comparative case analysis. She recognized the impact of Lucas' illness on both sons and their respective qualities of life. Sandra began to detect the toll that the extended hospitalization was taking on Lucas. She noted how little bonding she had been able to do with Leo since most of her time was in the hospital with Lucas.
Over months of paying attention to the common, everyday struggle for Lucas to breathe and his multiple attempts to overcome respiratory infections, Sandra observed that his ability to play, to eat, to be held, and move were all hindered by his vent dependence and his bone structure. When Sandra began to realize that "sus luzes" or "his lights" from his baby soother, which danced on the hospital room ceiling, were Lucas' primary source of joy, Sandra questioned if the repeated respiratory infections and Jarcho-Levin syndrome were manageable or survivable, and to what end.