title: End of life of patients treated with haemodialysis as narrated by their close relatives.
abstract: OBJECTIVE
  The study aimed to describe end of life for patients treated with maintenance haemodialysis as narrated by their close relatives.
  
  
  BACKGROUND
  Many patients undergoing haemodialysis are older, have several comorbidities and underestimated symptoms and are in their last year of life. To improve care, we need to know more about their end-of-life situation.
  
  
  METHODS
  Qualitative and descriptive.
  
  
  METHODS
  Qualitative retrospective interviews were conducted with 14 close relatives of deceased haemodialysis patients (3-13 months after death). Data were analysed using qualitative content analysis. The study is ethically approved.
  
  
  RESULTS
  In the last months, a gradual deterioration in health with acute episodes necessitating hospital admissions was described. This involved diminishing living space and expressions of dejection, but also of joy. Three patterns emerged in the last weeks: uncertain anticipation of death as life fades away; awaiting death after haemodialysis withdrawal; and sudden but not unexpected death following intensive care. Findings show complexities of decisions on haemodialysis withdrawal.
  
  
  CONCLUSIONS
  Different end-of-life patterns all involved increasingly complex care needs and existential issues. Findings show a need for earlier care planning. The identification of organisational factors to facilitate continuity and whole person care to meet these patients' specific care needs with their complex symptom burdens and comorbidities is needed. Findings indicate the need for integration of a palliative care approach in the treatment of patients in haemodialysis care.
authors.affiliation: Sophiahemmet University, Stockholm, Sweden.|Division of nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Lena
authors.initials: L
authors.lastname: Axelsson
authors.affiliation: Division of nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Birgitta
authors.initials: B
authors.lastname: Klang
authors.affiliation: Sophiahemmet University, Stockholm, Sweden.|Department of Learning, Informatics, Management and Ethics, Medical Management Center, Karolinska Institutet, Stockholm, Sweden.|Stockholms Sjukhem Foundation, Stockholm, Sweden.
authors.forename: Carina
authors.initials: C
authors.lastname: Lundh Hagelin
authors.affiliation: Department of Clinical Sciences, Karolinska Institutet, Danderyd University Hospital, Stockholm, Sweden.
authors.forename: Stefan H
authors.initials: SH
authors.lastname: Jacobson
authors.affiliation: Sophiahemmet University, Stockholm, Sweden.|Department of Clinical Sciences, Karolinska Institutet, Danderyd University Hospital, Stockholm, Sweden.
authors.forename: Sissel Andreassen
authors.initials: SA
authors.lastname: Gleissman
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000739:Anecdotes as Topic; D017028:Caregivers / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000458:organization & administration / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D006435:Renal Dialysis / Q000523:psychology*; D012189:Retrospective Studies; D013548:Sweden; D013727:Terminal Care / Q000523:psychology*
keywords: end of life; end-stage renal disease; haemodialysis; qualitative content analysis; qualitative interviews; retrospective interviews