Abstract

Background Purposeless physiological monitoring at the end-of-life is not recommended. However, studies on how families feel regarding the death of patients with terminal cancer without continuous electrocardiographic monitoring (CEM) are lacking. Objectives To explore the impact on the quality of care and the feelings and psychological distress experienced by families when CEM is not used during the 24 hours preceding a patient’s death. Methods In this multicenter cross-sectional, self-report questionnaires were distributed to 1087 bereaved families at Japanese specialized palliative care units in 2018. Results Out of 671 responses, 394 valid responses were analyzed. Families of nonmonitored patients (NM-group) accounted for 79.2%, while those with bedside electrocardiogram monitoring (MB-group) and remote nurse station monitoring (MC-group) comprised 11.9% and 8.9%, respectively. In the NM-group, 85.5% expressed satisfaction without CEM, which was more than 10% lower than other groups. While 14% in the NM-group desired patient monitoring, families who received adequate explanations about CEM had lower proportions compared to the MB-group ( P = .021). Univariate analyses showed no significant differences in evaluations of the quality of care and families’ psychological distress (mean scores of Overall Care Satisfaction, Care Evaluation Scale, Good Death Inventory, Brief Grief Questionnaires) across all groups. Conclusion While the majority of NM-group were satisfied with their patient’s care without CEM, the proportion of dissatisfied families was higher than in other groups. Although not using CEM is not a major hindrance to end-of-life care for patients with terminal cancer, providing sufficient explanations may be important for satisfactory care.

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