Fragmented care and whole-person illness: Decision-making for people with chronic end-stage kidney disease

• Published in: Chronic illness Vol. 11; no. 1; p. 44
• Main Authors: Allen, Dawn, Badro, Valerie, Denyer-Willis, Laurie, Ellen Macdonald, Mary, Paré, Anthony, Hutchinson, Tom, Barré, Paul, Beauchemin, Roch, Bocti, Helen, Broadbent, Alison, Cohen, S Robin
• Format: Journal Article
• Language: English
• Published: United States 01.03.2015
• Subjects: Adult; Aged; Canada; Chronic Disease; Comorbidity; Decision Making; Female; Health Services Needs and Demand; Holistic Health; Humans; Kidney Failure, Chronic - psychology; Male; Middle Aged; Canada; whole-person care; decision-making; fragmented care; Co-morbidity
• ISSN: 1745-9206
• DOI: 10.1177/1742395314562974

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. 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. 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. 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. 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.