Patient experience of dialysis refusal or withdrawal – a review of the literature

Aim. The aim of this literature review was to advance understanding of dialysis refusal and withdrawal in relation to the experiences of patients and carers and to explore the trajectory to death of those abating dialysis.

Method. Databases searched included CINAHL, Medline, PsycINFO, British Nursing Index, International Bibliography of the Social Sciences, ASSIA and Cancerlit. Forty-four quantitative papers and two qualitative papers were identified.

Findings. The patient and carer experience is rarely explored in the literature but issues related to ‘Making decisions to withhold/forego or withdraw treatment’, ‘Length of survival without dialysis’, Prevalence of symptoms in end-stage renal disease’, ‘The utilisation of Advance Directives’ and ‘The impact on families’ throw some light on the phenomena of dialysis refusal and withdrawal.

Conclusions. Little is known about those patients who withdraw from or decide not to commence dialysis. Empirical studies related to those who opt not to embark on dialysis are limited to four worldwide. There is an urgent need for further research to determine the experiences and needs of this population and a more patient-centred approach is required, consistent with modern palliative medicine.