Emotionally Perilous Paths

Chapter 8 grapples with the implications of the author’s findings from her case studies. It highlights how the quest for hope can save lives when it brings families of critically ill children to the “right” treatment; how it can garner families and their children “microadvantages” throughout the treatment process; how it can help everyone involved express the depth of their care; how it can change how families engage with the social world around them; and how it can sometimes breed additional pain, suffering, turmoil, and regret.

The Fragility and Tenacity of Hope

Chapter 7 introduces the author’s sudden personal immersion into the world of negotiating life-threatening illness. When Amanda Gengler’s father was diagnosed with a terminal brain tumor, the significant advantages of care-captaining and the potential consequences of care-entrusting were brought into even sharper relief. By living an experience somewhat parallel to that of the families she was studying, she found the emotional dynamics at the root of these illness management strategies crystalizing in her own daily life. She also learned intimately that hope can ultimately serve as both a stepping stone and a stumbling block as illness unfolds.

When Everything Is Not Enough

Chapter 6 considers the emotional costs and benefits of care-captaining and care-entrusting strategies in the terrible moments when children’s lives are were ending. and shows how powerful the imperative to hold onto hope “no matter what” can be. In the two case studies detailed in this chapter, hope was so deeply embedded in the fabric of the illness and treatment experience that even the physicians struggled to escape its pull—using a transformed version of hope to help parents withdraw care at the end of children’s lives. Moreover, when parents were faced with the impending loss of their children, the resources they had available to them and the freedom with which they could or could not switch between illness management strategies as needed led to very different experiences of their children’s final weeks of life.

Blending and Switching Care Strategies

Chapter 5 analyzes the emotional dynamics of families with critically ill children, detailing the cases and moments in which families blended or switched illness management strategies. For families with enough cultural health capital to care-captain at strategic moments, stepping back and care-entrusting at other times could facilitate a less harried illness experience. These cases, along with instances in which other families switched strategies, illuminate the powerful emotional forces driving families’ decisions about how to manage their child’s illness.

Care-Entrusting

Chapter 4 profiles families of critically ill children who primarily care-entrusted. The author lays out the very different philosophies that several families applied to managing their children’s medical care and shows the various ways that they channelled their advocacy efforts. These families missed out on some of the medical advantages care-captaining could produce, and, with fewer resources, often struggled to negotiate the logistical demands of caring for a critically ill child. Yet care-entrusting often makes more emotional sense for families with little cultural health capital, and as such can provide them some important nonmedical benefits.

Care-Captaining

Chapter 3 profiles parents whose primary illness management strategy was care-captaining. In describing the process through which three different sets of parents accessed and negotiated care at elite medical centers, the author demonstrates the advantages that care-captaining can garner families who are able to do so successfully and shows how physicians interpreted their efforts. Surprisingly, parents’ care-captaining efforts could help physicians feel better as well.

Studying Families of Critically Ill Children

Chapter 2 summarizes the research methodology used in this book, including the qualitative approach of “multiple-case selection” to study families across race, class, and gender; the use of emotions as clues in ethnographic research; and the challenges of fieldwork with end-of-life issues. It also describes the specific settings in which this research was conducted, including the elite hospital where the case studies were undertaken and the Ronald McDonald House where families of critically ill children were accommodated.

Hope Is a Thing with Feathers

Since families with critically ill children have different resources available to them, they take different approaches to managing their child’s life-threatening illness. The author introduces basic concepts that are analyzed over the course of the book, including care-captaining, which involves working hard to influence the course of their child’s treatment, and care-entrusting, which involves deferring to the judgement of their child’s healthcare providers. Additionally, the chapter covers the topic of healthcare inequality and cultural health capital, emotions and the reproduction of inequality in family life, and more.