Talking About Death With Terminally-Ill Cancer Patients: What Contributes to the Regret of Bereaved Family Members?

Abstract

Context: Talking about death is an important issue for terminally-ill cancer patients and their families. Little is known about how often and which bereaved families regret not having talked about death with their deceased loved one.

Objectives: To explore the prevalence of a regret of not having talked about death with a deceased loved one among bereaved family members of adult cancer patients, and to systematically explore factors contributing to their regret.

Methods: We conducted a nationwide survey of 999 bereaved families of cancer patients admitted to 133 inpatient hospices in Japan and surveyed families' regret on talking about death. Exploratory analyses identified the underlying structures of process, option, and outcome subscales of factors contributing to regret.

Results: Among 678 bereaved families (response rate 68%), 224 (33%) regretted not having talked about death sufficiently, whereas 40 (5.9%) conversely regretted having talked about death. Three process factors ("prognostic disclosure to patient" [β = 0.082, P = 0.039], "upsetting of patient and family" [β = 0.127, P = 0.001], and "family's sense of uncertainty about when to act based on terminal awareness" [β = 0.141, P = 0.000]) and an outcome factor ("having achieved a good death" [β = -0.152, P = 0.000]) contributed to the regret of talking insufficiently.

Conclusion: A third of bereaved families of adult cancer patients regretted not having talked about death sufficiently. Clinicians may minimize this regret by facilitating a shared understanding of the disease and prognosis, advising families explicitly when to talk based on terminal awareness, providing continuous emotional support, and validating their decision on talking about death.

Keywords: End-of-life discussion; bereaved family; cancer; regret.