Objectives Explanation about the impending death of imminently dying patients with cancer is important for their families. However, little is known about how clinicians explain impending death and how families perceive the explanation. We aimed to clarify bereaved families’ perception of the need for improvements in the explanation about impending death and to explore the factors contributing to the need.
Methods In a nationwide survey of 818 bereaved families of patients with cancer admitted to inpatient hospices in Japan, we evaluated family-perceived need for improvements in the explanation about impending death and families’ experiences of the explanation.
Results Among all the participants (n=516, 63%), 35 (6.8%), 123 (24%) and 297 (58%) families felt that much/considerable, some and no improvements were needed, respectively. Independent determinants of the need were a younger patient age (OR=0.97; 95% CI 0.95 to 0.99; P=0.009); not receiving an ‘explicit explanation about physical signs of impending death’ (OR=0.67; 95% CI 0.51 to 0.88; P=0.004); not receiving an ‘explanation of how long the patient and family could talk’ (OR=0.67; 95% CI 0.51 to 0.88; P<0.001); receiving an ‘excessive warning of impending death’ (OR=1.45; 95% CI 1.03 to 2.03; P=0.033) and having a feeling of ‘uncertainty caused by vague explanations about future changes’ (OR=1.77; 95% CI 1.38 to 2.27; P<0.001).
Conclusions Nearly a third of the bereaved families perceived some need to improve the explanation about impending death. To better help patients/families prepare for their end-of-life, clinicians should recognise and explain various impending death signs; find a balance between detailed explanation and excessive warning and address how long they could talk in the remaining time.
- impending death
- hospice care
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Contributors All authors were responsible for the study concept and design. NI and MMi acquired the data, which were analysed and interpreted by MMo, TM, NI, YS and MMi. MMo and TM drafted the manuscript. TM, NI, YS and MMi supervised the study and critically revised the manuscript for important intellectual content. All authors approved the final version of the manuscript to be published. MMo conducted the statistical analysis. MMo and MMi obtained funding. NI and MMi were responsible for administrative, technical and material support. MMo is the guarantor.
Funding This study was funded by the Hospice Palliative Care Japan and MMo was in part supported by Japan Society for the Promotion of Science KAKENHI Grant Number JP16K15418.
Disclaimer The lead author, MMo (the manuscript’s guarantor) affirms that the manuscript is an honest, accurate and transparent account of the study being reported; that no important aspects of the study have been omitted and that any discrepancies from the study as planned have been explained.
Competing interests None declared.
Ethics approval The protocol was approved by the institutional review board (IRB) at the central institution (Tohoku University, #2016-1-015; 15 April 2016), followed by IRBs of all participating institutions.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Full dataset available from the corresponding author. Written consent was not obtained but the presented data are anonymised and risk of identification is low.