title: Patients' and families' perspectives of patient safety at the end of life: a video-reflexive ethnography study.
abstract: OBJECTIVE
  The aim of this study was to investigate patients' and families' perspectives of safety and quality in the setting of a life-limiting illness.
  
  
  METHODS
  Data reported here were generated from a qualitative study using video-reflexive ethnographic methodology. Data were collected over 18 months and generated through participant observation, shadowing of clinicians, field-interviews and semi-structured interviews with patients and families.
  
  
  METHODS
  The study was conducted at two hospital sites in Sydney, Australia and in patients' homes.
  
  
  METHODS
  Patients with an advanced life-limiting illness (n = 29) ranging in age between 27 and 89 years and family members (n = 5) participated in the study.
  
  
  RESULTS
  Patient safety remains important to dying patients and families. For dying people, iatrogenic harm is not regarded as 'one off' incidents. Rather, harm is experienced as a result of an unfolding series of negative events. Critically, iatrogenic harm is emotional, social and spiritual and not solely technical-clinical misadventure and is inextricably linked with feeling unsafe. Thus, patient safety extends beyond narrowly defined technical-clinical parameters to include interpersonal safety.
  
  
  CONCLUSIONS
  Current approaches to patient safety do not address fully the needs of dying patients and their families. Patients and their families regard poor communication with and by health professionals to be harmful in and of itself.
authors.affiliation: Discipline Palliative and Supportive Services, School of Health Sciences, Flinders University, Adelaide, SA, Australia.
authors.forename: Aileen
authors.initials: A
authors.lastname: Collier
authors.forename: Ros
authors.initials: R
authors.lastname: Sorensen
authors.affiliation: Faculty of Health, School of Health Sciences, University of Tasmania (Sydney Campus), NSW, Australia Agency for Clinical Innovation, NSW Ministry of Health, NSW, Australia.
authors.forename: Rick
authors.initials: R
authors.lastname: Iedema
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000884:Anthropology, Cultural; D001315:Australia; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D061214:Patient Safety; D011368:Professional-Family Relations; D036301:Qualitative Research; D013727:Terminal Care; D014741:Video Recording
keywords: adverse event; communication; end-of-life care; palliative care; patient safety; patient-centred care; qualitative research