Learning Objective 1: The learner will be able to describe typical illness trajectories of infants with life-threatening conditions.
Learning Objective 2: The learner will be able to describe factors influencing care planning for children with life-threatening conditions who subsequently die.
Methods: A longitudinal case study design was used to study 11 cases involving infants with extreme prematurity (n=2), complex heart disease (n=5), or metabolic disorders requiring a stem cell transplant (n=4). Each case included an infant, parents, and providers (12 infants, 21 parents, 67 providers). Illness data, narrative interviews, and questionnaires were used across the trajectory of illness from birth/diagnosis until death. Illnesses trajectories and factors influencing decision-making were analyzed using visualization methods integrating illness course, treatments, parental stress, anxiety and posttraumatic symptoms, and parent and provider levels of hope and perceptions of infant discomfort.
Results: All infants died while receiving intensive care. Three trajectory types were identified: a) escalation of care with improving health status, b) escalation of care with periods of stability and decline in health status, and c) escalation of care with declining health status. Parent and provider decision-making centered on single illness events such as sepsis or a treatment complication rather than the illness trajectory. Positive influences on care decisions included trusting parent-provider relationships, support of parental advocacy for infant, and provider team cohesion. Negative influences included conflict and lack of congruence between parent and provider levels of hope and infant discomfort. Discussions regarding shifting the focus from curative to palliative care were delayed by a desire for prognostic certainty.
Conclusions: As with previous studies, prognostic uncertainty contributed to decision-making. The use of visual trajectory models in care planning allows foresight of several possible illness trajectories and precludes the need for prognostic certainty when discussing palliative care. This model may improve parent-provider relationships and facilitate pediatric decision-making.