title: End-of-life care decisions for haemodialysis patients - 'We only tend to have that discussion with them when they start deteriorating'.
abstract: 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.
  
  
  
  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.
  
  
  
  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 There is variability in end-of-life practices amongst nephrologists; some patients are felt to be withdrawn from dialysis too late.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.
  
  
  
  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.
authors.affiliation: Primary Care Patient Safety (PISA) Research Group, Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, Wales, UK.
authors.forename: Sophia
authors.initials: S
authors.lastname: Lazenby
authors.affiliation: Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, Wales, UK.|Primary and Emergency Care Research (PRIME) Centre Wales, Cardiff University, Cardiff, Wales, UK.
authors.forename: Adrian
authors.initials: A
authors.lastname: Edwards
authors.affiliation: School of Healthcare Sciences, Cardiff University, Cardiff, Wales, UK.|Cardiff Institute for Tissue Engineering and Repair, Cardiff University, Cardiff, Wales, UK.|School of Healthcare, University of Leeds, Leeds, UK.
authors.forename: Raymond
authors.initials: R
authors.lastname: Samuriwo
authors.affiliation: School of Medicine, Cardiff University, Cardiff, Wales, UK.
authors.forename: Stephen
authors.initials: S
authors.lastname: Riley
authors.affiliation: Nursing Palliative Research and Education Unit, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.
authors.forename: Mary Ann
authors.initials: MA
authors.lastname: Murray
authors.affiliation: Primary and Emergency Care Research (PRIME) Centre Wales, Cardiff University, Cardiff, Wales, UK.|Department of Family Practice, University of British Columbia, Vancouver, BC, Canada.|Institute of Healthcare Policy and Practice, University of the West of Scotland, Paisley, Scotland.
authors.forename: Andrew
authors.initials: A
authors.lastname: Carson-Stevens
mesh_terms: D000328:Adult; D003142:Communication; D003657:Decision Making; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009726:Nurses / Q000523:psychology; D010820:Physicians / Q000523:psychology; D011369:Professional-Patient Relations; D036301:Qualitative Research; D006435:Renal Dialysis; D013727:Terminal Care; D014852:Wales
keywords: advance care planning; decision making; end of life; haemodialysis; nephrologists; prognosis