End-of-life care decisions for haemodialysis patients: ‘We only tend to have that discussion with them when they start deteriorating’

Sophia Lazenby, Adrian Edwards, Raymond Samuriwo, Stephen Riley, Mary Ann Murray, Andrew Carson-Stevens*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

21 Citations (Scopus)
1 Downloads (Pure)

Abstract

Background: Haemodialysis patients receive very little involvement in their end-of-life care decisions. Issues relating to death and dying are commonly avoided until late in their illness. This study aimed to explore the experiences and perceptions of doctors and nurses in nephrology for involving haemodialysis patients in end-of-life care decisions. Methods: A semi-structured qualitative interview study with 15 doctors and five nurses and thematic analysis of their accounts was conducted. The setting was a large teaching hospital in Wales, UK. Results: Prognosis is not routinely discussed with patients, in part due to a difficulty in estimation and the belief that patients do not want or need this information. Advance care planning is rarely carried out, and end-of-life care discussions are seldom initiated prior to patient deterioration. There is variability in end-of-life practices amongst nephrologists; some patients are felt to be withdrawn from dialysis too late. Furthermore, the possibility and implications of withdrawal are not commonly discussed with well patients. Critical barriers hindering better end-of-life care involvement for these patients are outlined. Conclusions: The study provides insights into the complexity of end-of-life conversations and the barriers to achieving better end-of-life communication practices. The results identify opportunities for improving the lives and deaths of haemodialysis patients.

Original languageEnglish
Pages (from-to)260-273
Number of pages14
JournalHealth Expectations
Volume20
Issue number2
DOIs
Publication statusPublished - 1 Apr 2017
Externally publishedYes

Bibliographical note

Copyright the Author(s) 2016. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

  • advance care planning
  • decision making
  • end of life
  • haemodialysis
  • nephrologists
  • prognosis

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