Shifting responses in quality of life: People living with dialysis

Purpose: People assess their quality of life (QoL) using internal standards, values, and priorities. With health changes, QoL responses shift to reflect current realities. This qualitative study investigated the life experience and QoL assessments of people living with dialysis (PWDs). Methods: Thirty-one interviews with 20 PWDs over the age of 70 (mean time on dialysis 34 months) and 11 family members investigated experience with disease and dialysis, related life challenges, medical decision-making, and future planning. Interviews were recorded, transcribed, and analyzed for themes and hypotheses using qualitative methods and description. Results: When beginning dialysis, PWDs' reported that life on dialysis was worth living and recalibrated their QoL assessments incorporating this standard into their daily lives. Three themes emerged as the disease progressed and dialysis became more difficult: PWDs first reported thriving on dialysis and then surviving with the support of dialysis, and when QoL was reported as poor, PWDs were reconsidering whether dialysis was still worth the life it was providing. Each of these steps involved changes in health circumstances, and PWDs explained their QoL assessments at each step using differing values and priorities. These steps in reconceptualization and reprioritization demonstrated PWDs' Response Shift and eventually led to another (recalibrated) standard: Life with dialysis was no longer worth living. Conclusions: Quality-of-life assessment is an on-going process for older dialysis patients. Clinicians should be alert for changes in subjective QoL statements as dialysis and underlying diseases progress. Response Shift explains these changes in assessment.