title: Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD.
abstract: BACKGROUND
  Although dialysis prolongs life for patients with end-stage kidney disease, 20% of deaths in this population are preceded by dialysis therapy withdrawal. Recently, there has been more focus on conservative (nondialytic) care as a legitimate option, particularly for elderly patients. This study aims to describe patients' and caregivers' perspectives on conservative treatment and end-of-life care in chronic kidney disease (CKD).
  
  
  METHODS
  Systematic review and thematic synthesis of qualitative studies.
  
  
  METHODS
  Patients with CKD and caregivers.
  
  
  METHODS
  MEDLINE, Embase, PsycINFO, CINAHL, and reference lists were searched to May 2013.
  
  
  METHODS
  Thematic synthesis was used to analyze the findings.
  
  
  RESULTS
  26 studies involving more than 711 patients (non-dialysis dependent [n=41], hemodialysis [n=544], peritoneal dialysis [n=9]; unspecified dialysis modality [n=31], conservative management [n=86]) and 178 caregivers were included. We identified 5 themes: invasive suffering (bodily deterioration, loss of freedom and independence, unyielding fatigue and pain, resignation, treatment burden and harm, financial strain), personal vulnerability (imminence of death, misunderstanding and judgment, autonomy and dignity, medical abandonment, trust and safety), relational responsibility (being a burden, demonstrating loyalty, protecting others from grief), negotiating existential tensions (accepting natural course of life, disrupted aging, worthlessness, living on borrowed time, respecting sanctity of life, life satisfaction, preserving self-identity), and preparedness (decisional clarity, informational power, spirituality and hope).
  
  
  CONCLUSIONS
  Non-English articles were excluded; therefore, the transferability of findings to other populations is unclear.
  
  
  CONCLUSIONS
  Some patients with CKD experience physical and psychosocial frailty and feel ambivalent about prolonging life. Some caregivers believe in providing relief from suffering, but are uncertain about making decisions regarding dialysis therapy initiation and discontinuation. We suggest that CKD management should encompass palliative care strategies that promote emotional resilience, sense of well-being, and self-value. Also, respectful and attentive communication may empower patients to convey their values and preferences about their own care.
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. Electronic address: allison.tong@sydney.edu.au.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.affiliation: Division of Nephrology, University of Vermont College of Medicine, Burlington, VT.
authors.forename: Katharine L
authors.initials: KL
authors.lastname: Cheung
authors.affiliation: Division of Nephrology, Stanford University, Palo Alto, CA.
authors.forename: Sumi Sukumaran
authors.initials: SS
authors.lastname: Nair
authors.affiliation: Division of Nephrology, Stanford University, Palo Alto, CA; Geriatric Research and Education Clinical Center, VA Palo Alto Health Care System, Palo Alto, CA.
authors.forename: Manjula
authors.initials: M
authors.lastname: Kurella Tamura
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
authors.affiliation: Division of Nephrology, Stanford University, Palo Alto, CA.
authors.forename: Wolfgang C
authors.initials: WC
authors.lastname: Winkelmayer
mesh_terms: D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D005192:Family Health; D006801:Humans; D008019:Life Style; D010166:Palliative Care; D036301:Qualitative Research; D006435:Renal Dialysis / Q000523:psychology; D051436:Renal Insufficiency, Chronic / Q000523:psychology / Q000628:therapy*; D013727:Terminal Care / Q000523:psychology
keywords: Palliative care; advance care planning; conservative care; dialysis; end-of-life care; end-stage kidney disease; end-stage renal disease (ESRD); patient-centered care; qualitative research