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

Dawn Allen*, Valerie Badro, Laurie Denyer-Willis, Mary Ellen Macdonald, Anthony Paré, Tom Hutchinson, Paul Barré, Roch Beauchemin, Helen Bocti, Alison Broadbent, S. Robin Cohen

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose: The study reported herein sought to better understand how patients with multimorbid, 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. Discussion: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. Conclusion: 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.

Original languageEnglish
Pages (from-to)44-55
Number of pages12
JournalChronic Illness
Volume11
Issue number1
DOIs
Publication statusPublished - 27 Mar 2015

Keywords / Materials (for Non-textual outputs)

  • co-morbidity
  • decision-making
  • fragmented care
  • whole-person care

Fingerprint

Dive into the research topics of 'Fragmented care and whole-person illness: Decision-making for people with chronic end-stage kidney disease'. Together they form a unique fingerprint.

Cite this