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

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.