title: Length of home hospice care, family-perceived timing of referrals, perceived quality of care, and quality of death and dying in terminally ill cancer patients who died at home.
abstract: OBJECTIVE
  This study aims to clarify the length of home hospice care, family-perceived timing of referrals, and their effects on the family-perceived quality of care and quality of death and dying of terminally ill cancer patients who died at home and identify the determinants of perceived late referrals.
  
  
  METHODS
  A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home supported by 15 home-based hospice services throughout Japan.
  
  
  RESULTS
  A total of 693 responses were analyzed (effective response rate, 66 %). Patients received home-based hospice care for a median of 35.0 days, and 8.0 % received home hospice care for less than 1 week. While 1.5 % of the families reported the timing of referrals as early, 42 % reported the timing as late or too late. The families of patients with a length of care of less than 4 weeks were more likely to regard the timing of referrals as late or too late. The patients of family members who regarded the timing of referrals as late or too late had a significantly lower perceived quality of care (effect size, 0.18; P = 0.039) and lower quality of death and dying (effect size, 0.15, P = 0.063). Independent determinants of higher likelihoods of perceived late referrals included: frequent visits to emergency departments, patient being unprepared for worsening condition, and patient having concerns about relationship with new doctor. Discharge nurse availability was independently associated with lower likelihoods of perceived late referrals.
  
  
  CONCLUSIONS
  A significant number of bereaved families regarded the timing of referrals to home hospices as late, and the perceived timing was associated with the family-perceived quality of care and quality of death and dying. Systematic strategies to overcome the barriers related to perceived late referrals are necessary.
authors.affiliation: Department of Community Health Care, Hamamatsu University School of Medicine, 1-20-1 Handayama Higashi-ku, Hamamatsu, Shizuoka, 433-8558, Japan, ayamagishi-tky@umin.ac.jp.
authors.forename: Akemi
authors.initials: A
authors.lastname: Yamagishi
authors.forename: Tatsuya
authors.initials: T
authors.lastname: Morita
authors.forename: Shohei
authors.initials: S
authors.lastname: Kawagoe
authors.forename: Megumi
authors.initials: M
authors.lastname: Shimizu
authors.forename: Taketoshi
authors.initials: T
authors.lastname: Ozawa
authors.forename: Emi
authors.initials: E
authors.lastname: An
authors.forename: Makoto
authors.initials: M
authors.lastname: Kobayakawa
authors.forename: Satoru
authors.initials: S
authors.lastname: Tsuneto
authors.forename: Yasuo
authors.initials: Y
authors.lastname: Shima
authors.forename: Mitsunori
authors.initials: M
authors.lastname: Miyashita
mesh_terms: D000328:Adult; D000368:Aged; D001294:Attitude to Health; D005190:Family / Q000523:psychology; D005260:Female; D017051:Hospice Care / Q000706:statistics & numerical data*; D006801:Humans; D007564:Japan; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000401:mortality / Q000451:nursing / Q000523:psychology*; D010465:Perception; D011787:Quality of Health Care / Q000706:statistics & numerical data*; D012017:Referral and Consultation; D011795:Surveys and Questionnaires; D019452:Terminally Ill / Q000706:statistics & numerical data*