Why did I start dialysis? A qualitative study on views and expectations from an elderly cohort of patients with end-stage renal failure starting haemodialysis in the United Kingdom

Abstract

It is now common for elderly patients with end-stage kidney disease to be offered treatment by dialysis. However, what these patients expect from dialysis is not known. Therefore, the purpose of this study was to elucidate the expectations of elderly patients starting dialysis and to investigate whether their views change after 6 months on this treatment. This was a prospective observational qualitative study of patients commencing haemodialysis in our centre from 2006 to 2007. Data were collected by interview and review of case notes at the time of starting dialysis and after 6 months of treatment. Patients were asked about their expectations from dialysis, symptoms, and views on advance care planning. Data were collected from 22 patients (mean age 69.1 years) within a month from starting dialysis. Seventy per cent of these patients had attended a pre-dialysis clinic for at least 4 months previously; despite this, many of the patients complained about having had little choice in starting dialysis and seemed uncertain about what dialysis would involve. Even so, over 90% of those interviewed were optimistic about dialysis, had high expectations from treatment and were not keen to discuss advance care planning at first interview. Sixteen patients were re-interviewed at 6 months (four patients had died meanwhile and two had been transferred to other centres). After 6 months, there was a change in patients' attitude, with only 45% of them still finding dialysis acceptable and more patients now keen to discuss advance care planning. Symptom burden was higher at 6 months than at initiation of dialysis treatment. Most elderly patients have unrealistic expectations from dialysis at the start of treatment. There is a need for more specific counselling of these patients to ensure that they make informed decisions about treatment modality and have realistic expectations if they chose to receive RRT.