How do patient information documents present dialysis and conservative kidney management? A document analysis

Background Most older people with advanced kidney disease face a decision between conservative kidney management (CKM) or dialysis and must weigh their potential benefits, risks and impacts on quality and length of life. Patient information documents are designed to supplement patients’ understanding of their kidney disease and explain treatment options to support decision-making. We aimed to explore how patient information documents frame the treatment options of CKM and dialysis and consider implications for patients’ treatment choice.

Methods We conducted a qualitative document analysis of patient information documents collected from four UK renal outpatient departments with variation in rates of CKM for people ≥75 years of age. Data were analysed using critical discourse analysis.

Results Three global themes were identified: 1) Treatment options are not presented equally: Dialysis was constructed as the assumed patient choice. CKM was often omitted as an option; when included, it was always mentioned last and was typically constructed negatively. 2) Deciding is challenging: Treatment decision-making, particularly choosing CKM, was portrayed as a challenge requiring emotional support, with clinicians the ultimate decision-maker. 3) Dialysis is living, CKM is dying: Patient information documents presented patients as living with one treatment option choice (dialysis) and dying with another (CKM). Advance care planning, palliative care and information about dying were presented only in the context of CKM, implying these were irrelevant topics for people choosing dialysis.

Conclusions Patient information documents presented unbalanced explanations of dialysis and CKM. Dialysis was framed as ‘treatment’ and possible complications were minimized. CKM was framed as ‘non-treatment’ and linked to advance care planning, palliative care and death. Inaccurate framing of both CKM and dialysis may mean patients exclude treatment options that may be more concordant with their goals, values and preferences.