title: Fragmented care and whole-person illness: Decision-making for people with chronic end-stage kidney disease.
abstract: OBJECTIVE
  The study reported herein sought to better understand how patients with multi-morbid, chronic illness-who receive care in institutions designed for treatment of acute illness-experience and engage in health-related decisions.
  
  
  METHODS
  In an urban Canadian teaching hospital, we studied the interactions of six hemodialysis patients and 11 of the health professionals involved in their care. For 1 year (September 2009 to September 2010), we conducted ethnographic observation and interviews of six cases each comprising one hemodialysis patient and various health professionals including medical specialists, nurses, a social worker, and a dietician.
  
  
  RESULTS
  We found that the ubiquity and complexity of health-related decision-making in the lives of these patients suggests the need for a more holistic interpretation of health-related decision-making.
  
  
  CONCLUSIONS
  We propose an interpretation of decision-making as an ongoing process of integrating illness and life; as frequently open-ended, cumulative, and relational; and as fundamentally shaped by the fragmented delivery of care for patients with multiple morbidities.
  
  
  CONCLUSIONS
  Our understanding of decision-making suggests that people living with complex chronic illness need to receive care from institutions that recognize and address their multi-morbidity as a whole illness that is constantly being integrated into the life of a whole person.
authors.affiliation: BC Centre for Palliative Care, Vancouver BC, Canada dallen@ihsts.ca dawn.allen@shaw.ca.
authors.forename: Dawn
authors.initials: D
authors.lastname: Allen
authors.affiliation: Champlain Centre for Health Care Ethics, Ottawa, ON, Canada.
authors.forename: Valerie
authors.initials: V
authors.lastname: Badro
authors.affiliation: Department of Anthropology, McGill University, Montreal, QC, Canada.
authors.forename: Laurie
authors.initials: L
authors.lastname: Denyer-Willis
authors.affiliation: Faculty of Dentistry, McGill University, Montreal QC, Canada.
authors.forename: Mary
authors.initials: M
authors.lastname: Ellen Macdonald
authors.affiliation: Faculty of Education, University of British Columbia, Vancouver, BC, Canada.
authors.forename: Anthony
authors.initials: A
authors.lastname: Paré
authors.affiliation: McGill Programs in Whole Person Care, Department of Oncology, McGill University, Montreal, QC, Canada.
authors.forename: Tom
authors.initials: T
authors.lastname: Hutchinson
authors.affiliation: McGill University Health Centre, Montreal, QC, Canada.
authors.forename: Paul
authors.initials: P
authors.lastname: Barré
authors.affiliation: McGill University Health Centre, Montreal, QC, Canada.
authors.forename: Roch
authors.initials: R
authors.lastname: Beauchemin
authors.affiliation: McGill University Health Centre, Montreal, QC, Canada.
authors.forename: Helen
authors.initials: H
authors.lastname: Bocti
authors.affiliation: McGill University Health Centre, Montreal, QC, Canada.
authors.forename: Alison
authors.initials: A
authors.lastname: Broadbent
authors.affiliation: Department of Medicine and Oncology, McGill University, Montreal, QC, Canada The Lady Davis Institute of the Jewish General Hospital, Montreal, QC, Canada.
authors.forename: S Robin
authors.initials: SR
authors.lastname: Cohen
mesh_terms: D000328:Adult; D000368:Aged; D002170:Canada; D002908:Chronic Disease; D015897:Comorbidity; D003657:Decision Making; D005260:Female; D006301:Health Services Needs and Demand; D006694:Holistic Health; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology*; D008297:Male; D008875:Middle Aged
keywords: Co-morbidity; decision-making; fragmented care; whole-person care