Patient perspectives on informed decision-making surrounding dialysis initiation

Background. Effectively communicating information and engaging patients not only increases the likelihood of true shared decision making, but it also improves trust in the doctor-patient relationship and increases self-care skills.Careful patientclinician shared decision-making about dialysis initiation has been promoted, but few studies have addressed patient perspectives on the extent of information provided and how decisions to start dialysis are made. Ninety-nine maintenance dialysis patients recruited from 15 outpatient dialysis centers in North Carolina completed semistructured interviews on information provision and communication about the initiation of dialysis. These data were examined with content analysis. In addition, informed decision-making (IDM) scores were created by summing patient responses (yes/no) to 10 questions about the decision-making. The mean IDM score was 4.4 (of 10; SD 2.0); 67 scored 5 or lower. Age at the time of decision-making (r 0.27, P 0.006), years of education (r 0.24, P 0.02) and presence of a warning about progressing to end-stage kidney disease (t 2.9, P 0.005) were significantly associated with IDM scores. Nearly 70 said that the risks and burdens of dialysis were not mentioned at all, and only one patient recalled that the doctor offered the option of not starting dialysis. While a majority (67) said that they felt they had no choice about starting dialysis (because the alternative would be death) or about dialysis modality, only 21.2 said that they had felt rushed to make a decision. About one-third of the patients perceived that the decision to start dialysis and modality was already made by the doctor. A majority of patients felt unprepared and ill-informed about the initiation of dialysis. Improving the extent of IDM about dialysis may optimize patient preparation prior to starting treatment and their perceptions about the decision-making process.