Admission to the ICU is a major event in a patient’s life and also for family members. We tried to elucidate how family members and ICU caregivers experience the dying process of their patients.
The prospective study took place in three Dutch ICUs. Patients who had stayed > 48 h and died in the ICU were eligible. The Quality of Dying and Death (QODD) questionnaire was used, with addition of items pertaining to the patient’s autonomy. Values indicate median and interquartile range.
We included 100 consecutive patients. ICU stay before death was 8 (3-16) days. APACHE (Acute Physiology and Chronic Health Evaluation) II score at admission was 24 (19-31). Family response rate was 89%. Families were satisfied with overall QODD (score, 8 [7-9]) and felt supported by the ICU caregivers (8 [7-9]). Pain control was scored lower by family members (8 [5.75-8.25]) than by nurses and physicians (9 [8-10], P = .024) Almost always, physicians discussed the patient’s end-of-life wishes with family members, although families rated the quality of the discussion lower (7 [5.5-8.5]) than physicians (9 [6.5-10]) (P = .045). The majority of the families (89%) felt included in the decision-making process. More than one-half of the family members (57%) believed that the physician made the final decision alone after giving information, whereas 36.8% believed they had participated in making the decision. Family members rated the QODD questionnaire as difficult (6 [5-8]), and several items were not answered by a majority of family members.
Quality of dying and death is generally perceived to be good by family members and caregivers of patients who die in Dutch ICUs. There is a need for modification of the QODD questionnaire for the European ICU population.