Caregiver experience with decision-making difficulties in end-of-life care for patients with cardiovascular diseases

Background: The decisional burden on caregivers in the end-of-life (EOL) care for patients with cardiovascular diseases (CVD) is unknown. We aimed to evaluate the frequency and circumstances of caregiver difficulties in decision-making during EOL care for CVD patients, its determinants, and associations with psychological distress in the bereaved caregivers. Methods: We conducted a cross-sectional survey using a questionnaire for bereaved caregivers of CVD patients who had died in 10 tertiary care centers. We assessed their overall and situation-specific decision-making difficulties during EOL care. The questionnaire also covered the attitudes of patients, caregivers, and attending physicians during EOL care and the respondents’ depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire). Results: We enrolled 266 bereaved caregivers [median age, 65 (57-72) years; 38.4% male] of CVD patients. Overall, 28.9% of them experienced difficulties in decision-making. The most difficult decision-making situations involved informing the patient of the prognosis (18.2%), life-prolonging treatment (17.9%), and discontinuation of hydration and artificial nutrition (15.6%). Difficulties were associated with patient and/or caregiver factors (poor understanding of disease status and the patient's wishes, caregiver's emotional inability), physician factors (poor understanding of the patient's and/or caregiver's values, inadequate support for decision-making), and both (insufficient communication, conflict of opinions and wishes). Decision-making difficulties were associated with subsequent depression (20.5% vs. 10.3%, p=0.029) and complicated grief (27.0% vs. 9.0%, p<0.001) among bereaved caregivers. Conclusions: Approximately 30% of bereaved caregivers experienced decisional burdens during EOL care of CVD patients. The caregiver's decisional burdens were associated with subsequent psychological distress.