Sena Yamamoto1, Harue Arao2, Eiko Masutani3, Miwa Aoki4, Megumi Kishino5, Tatsuya Morita6, Yasuo Shima7, Yoshiyuki Kizawa8, Satoru Tsuneto9, Maho Aoyama10, Mitsunori Miyashita11. 1. Department of Nursing, Social Medical Corporation Hakuaikai Sagara Hospital, Kagoshima, Japan. 2. Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan. Electronic address: h-arao@sahs.med.osaka-u.ac.jp. 3. Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan. 4. Faculty of Nursing, University of Kochi, Kochi, Japan. 5. Department of Nursing, Kobe University Hospital, Kobe, Japan. 6. Palliative and Supportive Care Division, Seirei Mikatahara Hospital, Hamamatsu, Japan. 7. Department of Palliative Medicine, Tsukuba Medical Center Hospital, Tsukuba, Japan. 8. Department of Palliative Medicine, Kobe University Graduate School of Medicine, Kobe, Japan. 9. Department of Palliative Medicine, Kyoto University Hospital, Kyoto, Japan. 10. Community Health Nursing, Course of Nursing, Tohoku University Graduate School of Medicine, Sendai, Japan. 11. Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan.
Abstract
CONTEXT: Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. OBJECTIVES: To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. METHODS: This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. RESULTS: Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P < 0.001). Multiple regression analyses revealed that higher burden was associated with selecting a place of EOL care that differed from that desired by participants (P < 0.001) and patients (P = 0.034), decision making without knowing the patient's wishes and values (P < 0.001) and without participants sharing their wishes and values with the patient's doctors and/or nurses (P = 0.022), and making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). CONCLUSION: Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important.
CONTEXT: Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. OBJECTIVES: To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. METHODS: This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. RESULTS:Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P < 0.001). Multiple regression analyses revealed that higher burden was associated with selecting a place of EOL care that differed from that desired by participants (P < 0.001) and patients (P = 0.034), decision making without knowing the patient's wishes and values (P < 0.001) and without participants sharing their wishes and values with the patient's doctors and/or nurses (P = 0.022), and making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). CONCLUSION: Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important.
Authors: Tomoyuki Ishibashi; Kana Kazawa; Yasmin Jahan; Michiko Moriyama Journal: Int J Environ Res Public Health Date: 2022-04-02 Impact factor: 3.390