Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD

Am J Kidney Dis. 2014 Jun;63(6):913-27. doi: 10.1053/j.ajkd.2013.11.017. Epub 2014 Jan 7.


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).

Study design: Systematic review and thematic synthesis of qualitative studies.

Setting & population: Patients with CKD and caregivers.

Search strategy & sources: MEDLINE, Embase, PsycINFO, CINAHL, and reference lists were searched to May 2013.

Analytical approach: 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).

Limitations: 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.

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.

MeSH terms

  • Attitude to Health*
  • Caregivers* / psychology
  • Family Health
  • Humans
  • Life Style
  • Palliative Care
  • Qualitative Research
  • Renal Dialysis* / psychology
  • Renal Insufficiency, Chronic / psychology
  • Renal Insufficiency, Chronic / therapy*
  • Terminal Care* / psychology