Yamamoto Sena, Arao Harue, Masutani Eiko, Aoki Miwa, Kishino Megumi, Morita Tatsuya, Shima Yasuo, Kizawa Yoshiyuki, Tsuneto Satoru, Aoyama Maho, Miyashita Mitsunori
Department of Nursing, Social Medical Corporation Hakuaikai Sagara Hospital, Kagoshima, Japan.
Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan.
J Pain Symptom Manage. 2017 May;53(5):862-870. doi: 10.1016/j.jpainsymman.2016.12.348. Epub 2017 Feb 9.
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.
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.
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.
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).
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.
对于晚期癌症患者及其家属而言，临终关怀地点的决策是一个重要问题。这通常需要代理决策，而这可能给家庭带来负担。
探讨癌症临终患者家庭因临终关怀地点决策而承受的负担，并调查影响该负担的因素。
这是一项采用自填问卷的横断面邮寄调查。参与者为来自日本133个姑息治疗单位的700名癌症患者的丧亲家庭成员。问卷涵盖决策负担、抑郁、悲伤以及决策过程。
参与者将情感压力视为最高负担。决策负担高的参与者在抑郁和悲伤方面的得分显著更高（均P<0.001）。多元回归分析显示，更高的负担与选择的临终关怀地点与参与者（P<0.001）和患者（P=0.034）期望的地点不同、在不了解患者意愿和价值观的情况下进行决策（P<0.001）以及参与者未与患者的医生和/或护士分享其意愿和价值观（P=0.022），以及因从前一机构或医院出院的截止日期而做出决策（P=0.005）有关。
临终关怀地点的决策被家庭决策者回忆起是繁重的。纳入分享与期望的临终关怀地点相关的患者和家庭成员价值观的早期决策过程很重要。
