Abstract / Summary
Family-centred life-sustaining treatment (LST) decisions may involve tensions between respect for patient wishes and the circumstances in which families interpret them. We compared questionnaire priorities with interview accounts in Korean ICUs before implementation of the Life-Sustaining Treatment Decisions Act. We conducted a convergent mixed-methods study at three academic hospitals and one long-term care hospital between December 2015 and August 2017. Seventy-six respondents (six patients and 70 family caregivers) completed a structured questionnaire and an institution-specific POLST-type form. Treatments received were abstracted from medical records. Nine purposively selected patient cases were explored through in-depth interviews and thematic analysis. Findings were integrated in a joint display. The patient’s wishes were the most frequently selected first-priority item (36/76, 47.4%), including 4/6 patients and 32/70 caregivers. Economic factors were ranked first by 3/76 respondents (3.9%) and second by 6/53 (11.3%) of those providing a valid second-priority response. Six patients (7.9%) completed their own forms. Interviewed caregivers described limited prior discussion of patient preferences. Economic and caregiving strain was prominent in family narratives, interwoven with prognostic uncertainty, concern for suffering, and interpretations of patient wishes. Contrasting accounts included support for further treatment despite hardship and a patient’s changing preference during worsening breathlessness. Antibiotics and nutrition were received by 70/76 and 72/76 patients, respectively. In this pre-implementation cohort, patient wishes were the most frequently endorsed first priority, although few patients completed their own POLST-type forms. Interview accounts linked surrogate interpretations of patient wishes with concerns about suffering, prognosis, and economic and caregiving strain. These findings highlight a tension between respect for patient wishes and the circumstances in which families interpret them, supporting advance care planning that elicits patients’ preferences directly where possible and explicitly addresses family burden. Contemporary studies are needed to assess these patterns under current law and financing arrangements. Not applicable.