title: What matters most in end-of-life care: perceptions of seriously ill patients and their family members.
abstract: BACKGROUND
  Initiatives to improve end-of-life care are hampered by our nascent understanding of what quality care means to patients and their families. The primary purpose of this study was to describe what seriously ill patients in hospital and their family members consider to be the key elements of quality end-of-life care.
  
  
  METHODS
  After deriving a list of 28 elements related to quality end-of-life care from existing literature, focus groups with experts and interviews with patients, we administered a face-to-face questionnaire to older patients with advanced cancer and chronic end-stage medical disease and their family members in 5 hospitals across Canada to assess their perspectives on the importance. We compared differences in ratings across various subgroups of patients and family members.
  
  
  RESULTS
  Of 569 eligible patients and 176 family members, 440 patients (77%) and 160 relations (91%) agreed to participate. The elements rated as "extremely important" most frequently by the patients were "To have trust and confidence in the doctors looking after you" (55.8% of respondents), "Not to be kept alive on life support when there is little hope for a meaningful recovery" (55.7%), "That information about your disease be communicated to you by your doctor in an honest manner" (44.1%) and "To complete things and prepare for life's end - life review, resolving conflicts, saying goodbye" (43.9%). Significant differences in ratings of importance between patient groups and between patients and their family members were found for many elements of care.
  
  
  CONCLUSIONS
  Seriously ill patients and family members have defined the importance of various elements related to quality end-of-life care. The most important elements related to trust in the treating physician, avoidance of unwanted life support, effective communication, continuity of care and life completion. Variation in the perception of what matters the most indicates the need for customized or individualized approaches to providing end-of-life care.
authors.affiliation: Department of Medicine, Kingston General Hospital, Kingston, Ont. dkh2@post.queensu.ca
authors.forename: Daren K
authors.initials: DK
authors.lastname: Heyland
authors.forename: Peter
authors.initials: P
authors.lastname: Dodek
authors.forename: Graeme
authors.initials: G
authors.lastname: Rocker
authors.forename: Dianne
authors.initials: D
authors.lastname: Groll
authors.forename: Amiram
authors.initials: A
authors.lastname: Gafni
authors.forename: Deb
authors.initials: D
authors.lastname: Pichora
authors.forename: Sam
authors.initials: S
authors.lastname: Shortt
authors.forename: Joan
authors.initials: J
authors.lastname: Tranmer
authors.forename: Neil
authors.initials: N
authors.lastname: Lazar
authors.forename: Jim
authors.initials: J
authors.lastname: Kutsogiannis
authors.forename: Miu
authors.initials: M
authors.lastname: Lam
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D002170:Canada; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology*; D005260:Female; D006760:Hospitalization; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D017060:Patient Satisfaction; D011787:Quality of Health Care; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*; D019452:Terminally Ill / Q000523:psychology*