Awareness of dying: it needs words

Abstract

PurposeThe purpose of this research is to study 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 whether medical records and nurses’ and family caregivers’ views on patients’ awareness of dying agree.MethodsNurses and family caregivers of 475 deceased patients from three different care settings in the southwest Netherlands were requested to fill out questionnaires. The two groups were asked whether a patient had been aware of the imminence of death. Also, medical records were screened for statements indicating that the patient had been informed of the imminence of death.ResultsNurses completed questionnaires about 472 patients, family caregivers about 280 patients (response 59%). According to the medical records, 51% of patients had been aware of the imminence of death; according to nurses, 58%; according to family caregivers, 62%. Patients who, according to their family caregiver, had been aware of the imminence of death were significantly more often in peace with dying and felt more often that life had been worth living. Inter-rater agreement on patients’ awareness of dying was fair (Cohen’s kappa = 0.23–0.31).ConclusionsBeing aware of dying is associated with acceptance of dying, which supports the idea that open communication in the dying phase can contribute to the quality of the dying process. However, views on whether or not patients are aware of the imminence of death diverge between different caregivers. This suggests that communication in the dying phase of patients is open for improvement.

Clinical Signs of Impending Death in Cancer Patients

“…The frequency of death rattle in our study (66%) is consistent with others [14,[30][31][32]. Consequently, their absence cannot rule out imminent death, but their presence can be highly informative.The positive LRs for pulselessness of radial artery, decreased urine output, Cheyne-Stokes breathing, respiration with mandibular movement, and death rattle were particularly high.…”

Dying in the Hospital: What Happens and What Matters, According to Bereaved Relatives

“…Patient awareness of and being at peace with approaching death were correlated with higher QOD scores, which also has been found elsewhere. 46 In 77% of all studied cases, patients died in the presence of family, which was more than that reported in studies in hospitals in New Zealand and France, where 60% and 34% of deceased patients, respectively, died with family present. 3,9 Presence at the moment of death was not strongly related to QOD; relatives gave more weight to saying good-bye.…”

“…45 The difference between physician's awareness and relative's and patient's awareness might be correlated with problematic communication but also to variation in the interpretation of what ''imminent death'' entails. 46,47 Whether and how physicians actually informed relatives about the patient's imminent death was not assessed and might differ from relatives' reports. 48 It has previously been shown that communication between physicians and patients or relatives about a poor prognosis and imminent death is often problematic.…”

Effect of a Palliative Care Nurse Champion Program on Nursing Care of Dying Patients in the Hospital: A Controlled before and after Study

“…Shortcomings and barriers have been reported in communication at the end of life between patients and healthcare professionals, and among the staff [40,[41][42][43]. Nurses consider communication at the end of life, although difficult, to be part of their responsibility; education has been found to contribute to increased confidence in interdisciplinary communication and communication with dying patients [29][30][31]37,41,[44][45][46].…”