Purpose: Being aware that death is imminent is often seen as a feature of a good death. A prerequisite for awareness of dying is open communication between all parties involved in the dying phase. We studied to what extent dying patients are aware of the imminence of death, whether such awareness is associated with patient characteristics, symptoms and acceptance of dying, and if medical records and nurses’ and family caregivers’ views on patients’ awareness of dying agree.
Method: Nurses and family caregivers of 475 deceased patients from three different care settings (hospitals, nursing homes and home care services) in the southwest-Netherlands were requested to fill out questionnaires. Both groups were asked whether a patient had been aware of their imminent death. In addition, medical records were screened for information indicating whether or not the patient was aware of the dying phase . Associations with awareness were assessed using chi-square tests. The level of agreement on patients’ awareness of dying between medical record, nurse and family caregiver was assessed using Cohen’s Kappa.
Result: In total, 472 nurses (response 99%) participated. Of the relatives 280 consented and completed a questionnaire (response 59%). According to the medical records, 51% of patients had been aware of the imminence of death; according to nurses, 58% and according to family caregivers, 62%. Patients who, according to their family caregiver, were aware of their imminent death were significantly more often in peace with dying and felt more often that life had been worth living, compared to patients who were not aware . The level of inter-rater agreement on patients’ awareness of dying was fair (Cohen’s Kappa= 0,23-0,31).
Conclusion: Being aware of dying is associated with acceptance of dying, which supports the idea that open communication in the dying phase between physicians, nurses, patients and family caregivers can contribute to the quality of the dying process. Communication about all potentially relevant aspects of the situation of a patient in the dying phase is a requirement for adequate patient-centered care. However, views on whether or not patients are aware of their imminent death diverge between different caregivers. This suggests that communication in the dying phase of patients is open for improvement.
See more of: The 33rd Annual Meeting of the Society for Medical Decision Making