title: Thinking ahead--the need for early Advance Care Planning for people on haemodialysis: A qualitative interview study.
abstract: BACKGROUND
  There is a need to improve end-of-life care for people with end-stage kidney disease, particularly due to the increasingly elderly, frail and co-morbid end-stage kidney disease population. Timely, sensitive and individualised Advance Care Planning discussions are acceptable and beneficial for people with end-stage kidney disease and can help foster realistic hopes and goals.
  
  
  OBJECTIVE
  To explore the experiences of people with end-stage kidney disease regarding starting haemodialysis, its impact on quality of life and their preferences for future care and to explore the Advance Care Planning needs of this population and the timing of this support.
  
  
  METHODS
  Semi-structured qualitative interview study of people receiving haemodialysis. Interviews were analysed using thematic analysis. Recruitment ceased once data saturation was achieved.
  
  
  METHODS
  A total of 20 patients at two UK National Health Service hospitals, purposively sampled by age, time on haemodialysis and symptom burden.
  
  
  RESULTS
  Themes emerged around: Looking Back, emotions of commencing haemodialysis; Current Experiences, illness and treatment burdens; and Looking Ahead, facing the realities. Challenges throughout the trajectory included getting information, communicating with staff and the 'conveyor belt' culture of haemodialysis units. Participants reported a lack of opportunity to discuss their future, particularly if their health deteriorated, and variable involvement in treatment decisions. However, discussion of these sensitive issues was more acceptable to some than others.
  
  
  CONCLUSIONS
  Renal patients have considerable unmet Advance Care Planning needs. There is a need to normalise discussions about preferences and priorities in renal and haemodialysis units earlier in the disease trajectory. However, an individualised approach is essential - one size does not fit all.
authors.affiliation: King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation Katherine.bristowe@kcl.ac.uk.
authors.forename: Katherine
authors.initials: K
authors.lastname: Bristowe
authors.affiliation: Brunel University London, Uxbridge, UK.
authors.forename: Helen L
authors.initials: HL
authors.lastname: Horsley
authors.affiliation: King's College Hospital NHS Foundation Trust, London, UK.
authors.forename: Kate
authors.initials: K
authors.lastname: Shepherd
authors.affiliation: Guy's and St Thomas' Hospital NHS Foundation Trust, London, UK.
authors.forename: Heather
authors.initials: H
authors.lastname: Brown
authors.affiliation: Guy's and St Thomas' Hospital NHS Foundation Trust, London, UK.
authors.forename: Irene
authors.initials: I
authors.lastname: Carey
authors.affiliation: NHS Improving Quality, Leeds, UK.
authors.forename: Beverley
authors.initials: B
authors.lastname: Matthews
authors.affiliation: Salford Royal NHS Foundation Trust, Salford, UK.
authors.forename: Donal
authors.initials: D
authors.lastname: O'Donoghue
authors.affiliation: King's College Hospital NHS Foundation Trust, London, UK.
authors.forename: Katie
authors.initials: K
authors.lastname: Vinen
authors.affiliation: King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation.
authors.forename: Felicity E M
authors.initials: FE
authors.lastname: Murtagh
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology / Q000628:therapy; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D036301:Qualitative Research; D011788:Quality of Life; D006435:Renal Dialysis / Q000523:psychology*; D013727:Terminal Care / Q000379:methods*; D006113:United Kingdom
keywords: Advance Care Planning; End-stage kidney disease; decision making; haemodialysis; preferences; priorities