Exemplary Quotes & Narrative Arcs
1. Means of Confronting Difficult Decisions (without abandoning hope)
A mother took significant risks to relocate so that her child could start an aggressive treatment regimen. She believes she was only able to make this decision because she had faith that God would provide for her and her child throughout the many hardships and uncertainties.
“I think and rethink decisions, but I don’t get stressed out about decisions, because my faith tells me that everything will be okay when it all comes out in the wash. It may not be from one day to the next, but if you have faith, you know that it will.” (Mother, regarding approach to decision-making in general)
2. Means of Delaying Acceptance of Harsh Realities
Parents of a child with a fatal prognosis refused to discuss the possibility of death, comfort care, or negative prognosis with physicians, citing their commitment to hope and their belief in miraculous healing through prayer. This refusal persisted despite numerous attempts by physicians to inform and educate the parents about the child’s condition.
“They just kept speaking death over my child all the time. We had already put that in the back of our mind, in case that worst-case scenario did happen. You know, we would have to accept it.” (Father, regarding refusal to have goals-of-care discussion)
3. Foundation for Trust—in God, Physicians, and Self
A mother relied on prayer for decision-making throughout the child’s illness, slightly delaying treatment initiation and certain procedures, citing belief that God is in control, that God equips her to make decisions, and that God is working through physicians.
“I just turned it over to God, because he’s in charge of all of this anyway … and there was only so much my mind could absorb and … I knew that my final decision was good because I had prayed about it.” (Mother, regarding decision to undergo a procedure)