TY - JOUR
T1 - Talking About Death With Terminally-Ill Cancer Patients
T2 - What Contributes to the Regret of Bereaved Family Members?
AU - Mori, Masanori
AU - Yoshida, Saran
AU - Shiozaki, Mariko
AU - Baba, Mika
AU - Morita, Tatsuya
AU - Aoyama, Maho
AU - Kizawa, Yoshiyuki
AU - Tsuneto, Satoru
AU - Shima, Yasuo
AU - Miyashita, Mitsunori
N1 - Funding Information:
This study was conducted with the cooperation of Hospice Palliative Care Japan (HPCJ). The authors would like to thank all participants and participating institutions for taking part in this study. This study was part of The Japan Hospice and Palliative Care Evaluation Study, funded by Japan Hospice Palliative Care Foundation, and in part supported by Japan Society for the Promotion of Science KAKENHI Grant Number JP16K15418. The authors declare no conflicts of interest with respect to the research, authorship, and publication of this article. Appendix ■ We will ask you how you and your loved one (patient) communicated after it became clear that the patient's illness was incurable. Please circle only one number that is the most applicable to you. Did you explicitly talk about death with the patient? 1. Never 2. Talked a little 3. Talked 4. Talked a lot How do you feel about having or not having explicitly talked about death? 1. Should not have talked at all 2. Should not have talked that much 3. It was just right 4. Should have talked a little more 5. Should have talked much more ■ After it became clear that the patient's illness was incurable, there may have been various communications with patients and health care professionals. We will ask you about your experiences and beliefs. Please circle only one number that is the most applicable to you. If there is discrepancy of experiences and beliefs among the family, please answer your own. Disagree Slightly disagree Slightly agree Agree Situations or communications between the patient and family Patient and family discussed preferred EOL care before the diagnosis. 1 2 3 4 Patient was aware of the imminent death. 1 2 3 4 Family was aware of the imminent death. 1 2 3 4 Awareness of imminent death was explicitly or implicitly shared between patient and family. 1 2 3 4 Family was unsure if patient was aware of the imminent death. 1 2 3 4 Family did not even think of talking about death with patient. 1 2 3 4 Family wanted to do something for patient, but was not sure when would be the high time. 1 2 3 4 Patient initiated conversation about death and/or action based on terminal awareness. 1 2 3 4 Family had to discuss issues related to death (e.g., money, family, job) or act based on terminal awareness regardless of patient preference. 1 2 3 4 Patient was upset about the imminent death. 1 2 3 4 Family was upset about the imminent death. 1 2 3 4 Communications with the health care professionals Family was explicitly informed of the patient's disease status (e.g., sites of metastases). 1 2 3 4 Family was explicitly informed of the influences of the patient's disease on future activities of daily life. 1 2 3 4 Patient was explicitly informed that the disease was incurable. 1 2 3 4 Patient was explicitly informed of the estimated prognosis. 1 2 3 4 Family was explicitly informed that the disease was incurable. 1 2 3 4 Family was explicitly informed of the estimated prognosis. 1 2 3 4 Health care professional facilitated communication between patient and family. 1 2 3 4 Family was able to talk to health care professional any time when there was subtle change in patient's or family's situation. 1 2 3 4 Health care professional advised from the medical perspective whether the goal of patient and family was appropriate (e.g., advised to do certain things a little earlier). 1 2 3 4 Health care professional facilitated conversation about death between patient and family. 1 2 3 4 Health care professional facilitated planning on how to spend time with patient and family. 1 2 3 4 Family's perceptions Patient was able to spend time according to his or her wishes. 1 2 3 4 Patient and family shared same perspective in dealing with the disease. 1 2 3 4 Patient was able to spend time while maintaining hope. 1 2 3 4 Family's roles were fulfilled. 1 2 3 4
PY - 2017/12
Y1 - 2017/12
N2 - 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.
AB - 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.
KW - End-of-life discussion
KW - bereaved family
KW - cancer
KW - regret
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U2 - 10.1016/j.jpainsymman.2017.02.021
DO - 10.1016/j.jpainsymman.2017.02.021
M3 - Article
C2 - 28797852
AN - SCOPUS:85030684063
VL - 54
SP - 853-860.e1
JO - Journal of Pain and Symptom Management
JF - Journal of Pain and Symptom Management
SN - 0885-3924
IS - 6
ER -