Masanori Mori1, Saran Yoshida2, Mariko Shiozaki3, Mika Baba4, Tatsuya Morita5, Maho Aoyama6, Yoshiyuki Kizawa7, Satoru Tsuneto8, Yasuo Shima9, Mitsunori Miyashita6. 1. Palliative Care Team, Seirei Mikatahara General Hospital, Hamamatsu, Japan. Electronic address: masanori.mori@sis.seirei.or.jp. 2. Graduate School of Education, Tohoku University, Sendai, Japan. 3. Department of Applied Sociology, Kindai University, Osaka, Japan. 4. Department of Palliative Medicine, Suita Tokushukai Hospital, Suita, Japan. 5. Division of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Japan. 6. Department of Community Health, Tohoku University Graduate School of Medicine, Sendai, Japan. 7. Department of Palliative Medicine, Kobe University Graduate School of Medicine, Kobe, Japan. 8. Department of Human Health Sciences, Graduate School of Medicine, Kyoto University, Kyoto, Japan. 9. Department of Palliative Medicine, Tsukuba Medical Center Hospital, Tsukuba, Ibaraki, Japan.
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.
CONTEXT: Talking about death is an important issue for terminally-ill cancerpatients 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 cancerpatients, and to systematically explore factors contributing to their regret. METHODS: We conducted a nationwide survey of 999 bereaved families of cancerpatients 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 cancerpatients 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.