Life-Sustaining Treatment Decisions and Parent Caregiving Experiences for Children With Medical Complexity

Children with medical complexity (CMC) frequently experience recurrent deterioration requiring life-sustaining treatment (LST) decisions in the pediatric intensive care unit. Parents serve as primary caregivers and decision makers; however, how accumulated caregiving experiences shape thresholds for acceptable LST during crises remains insufficiently understood.

To explore how parents of CMC interpret their longitudinal caregiving experiences and how these interpretations shape parents' orientations toward LST during episodes of clinical deterioration.

A hermeneutic, phenomenologic, qualitative study was conducted between April 16 and July 13, 2025. Data collection and analysis proceeded iteratively through Heideggerian interpretive cycles. The study took place at a tertiary medical center in Taiwan, including the pediatric intensive care unit and multidisciplinary outpatient clinics caring for CMC. Parents from 8 families caring for CMC (aged 1-7 years) participated. Participants were recruited using purposive sampling. All were primary caregivers who had previously discussed anticipated deterioration or LST. Parents of children who had died before recruitment were excluded.

Long-term caregiving for CMC and participation in recurrent discussions regarding LST during periods of clinical instability.

Parents' meaning-making processes related to caregiving and relevant decision-making were explored through semistructured, in-depth, independent interviews. Data were analyzed thematically using interpretive phenomenologic methods.

A total of 13 parents (6 fathers and 7 mothers; age range, 29-52 years) participated. Participants described caregiving as an enduring, relational, and morally nondelegable responsibility shaped by impermanence and uncertainty. Four interrelated themes emerged: endurance, contradiction, being, and cohesion. Parents developed conditional thresholds for LST based on experiential assessments of comfort, dignity, participation, and perceived pain rather than prognosis alone. Parents' orientations toward LST evolved through repeated crises, experiential learning, and centripetal reorientation of family meaning.

In this qualitative study of parents of CMC, LST decisions were understood and approached through relational and experiential frameworks grounded in dignity, comfort, and shared life. These findings suggest that early, iterative, and values-based pediatric advance care planning that incorporates parents' lived criteria and clarifies legal boundaries may reduce crisis-driven decision-making and support ethically aligned care.