title: Decision Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors.
abstract: 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.
authors.affiliation: Department of Nursing, Social Medical Corporation Hakuaikai Sagara Hospital, Kagoshima, Japan.
authors.forename: Sena
authors.initials: S
authors.lastname: Yamamoto
authors.affiliation: Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan. Electronic address: h-arao@sahs.med.osaka-u.ac.jp.
authors.forename: Harue
authors.initials: H
authors.lastname: Arao
authors.affiliation: Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan.
authors.forename: Eiko
authors.initials: E
authors.lastname: Masutani
authors.affiliation: Faculty of Nursing, University of Kochi, Kochi, Japan.
authors.forename: Miwa
authors.initials: M
authors.lastname: Aoki
authors.affiliation: Department of Nursing, Kobe University Hospital, Kobe, Japan.
authors.forename: Megumi
authors.initials: M
authors.lastname: Kishino
authors.affiliation: Palliative and Supportive Care Division, Seirei Mikatahara Hospital, Hamamatsu, Japan.
authors.forename: Tatsuya
authors.initials: T
authors.lastname: Morita
authors.affiliation: Department of Palliative Medicine, Tsukuba Medical Center Hospital, Tsukuba, Japan.
authors.forename: Yasuo
authors.initials: Y
authors.lastname: Shima
authors.affiliation: Department of Palliative Medicine, Kobe University Graduate School of Medicine, Kobe, Japan.
authors.forename: Yoshiyuki
authors.initials: Y
authors.lastname: Kizawa
authors.affiliation: Department of Palliative Medicine, Kyoto University Hospital, Kyoto, Japan.
authors.forename: Satoru
authors.initials: S
authors.lastname: Tsuneto
authors.affiliation: Community Health Nursing, Course of Nursing, Tohoku University Graduate School of Medicine, Sendai, Japan.
authors.forename: Maho
authors.initials: M
authors.lastname: Aoyama
authors.affiliation: Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan.
authors.forename: Mitsunori
authors.initials: M
authors.lastname: Miyashita
mesh_terms: D001601:Bereavement; D017028:Caregivers / Q000523:psychology*; D000066491:Clinical Decision-Making; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003863:Depression / Q000453:epidemiology / Q000523:psychology*; D005190:Family / Q000523:psychology; D005260:Female; D006117:Grief; D019538:Health Care Surveys; D006801:Humans; D015994:Incidence; D007564:Japan / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000401:mortality / Q000523:psychology* / Q000628:therapy*; D010166:Palliative Care / Q000523:psychology; D013727:Terminal Care / Q000523:psychology*
keywords: Cancer; decision making; decisional burden; end-of-life; family; palliative care