Comparison of Goals of Care Between Hemodialysis Patients and Their Health Care Providers: A Survey

BACKGROUND: Patient-centered care requires knowledge of patients’ goals of care (GoC) on the part of health care providers (HCPs). Whether HCPs caring for in-center hemodialysis patients meet this criterion is uncertain. OBJECTIVE: We designed and conducted a GoC survey among patients and HCPs within a single in-center hemodialysis (ICHD) program to determine whether HCPs have an understanding of their patients’ GoC. DESIGN: This was a prospective comparative quantitative survey study. SETTING: The study included a single Canadian maintenance ICHD center. PARTICIPANTS: These included hemodialysis patients and their primary nephrologists, nurses, social workers, pharmacists, and dietitians. METHODS AND MEASUREMENTS: Two surveys, one for patients and another for primary HCPs, were designed, piloted, and administered. For each participating patient, HCPs consisted of the primary nephrologist, nurse, social worker, pharmacist, and dietitian. Surveys included questions pertaining to 7 GoC themes. Patient-HCP agreement on the importance of each domain individually and the most important domain overall was assessed with kappa statistics. Factors influencing agreement were assessed with logistic regression in a secondary analysis. RESULTS: A total of 173 patients were invited to participate, of whom 137 (79%) completed surveys. Fifty HCPs completed 623 corresponding surveys: 132 by physicians, 112 by nurses, 126 by pharmacists, 127 by social workers, and 126 by dietitians. A total of 70.1% and 78.8% of patients agreed with the importance of and would feel comfortable having GoC discussions, respectively, with their HCPs; 42.7% of physicians reported not having provided prognostic information to the corresponding patient. Patient-HCP agreement regarding GoC was poor (all κ < .25, all P values > .05). In adjusted analyses, only patients choosing “Be Cured” as the most important GoC was significantly associated with poorer HCP-patient agreement than expected (odds ratio, 0.04; 95% confidence interval, 0.01-0.18). LIMITATIONS: This is a single-center study involving only ICHD patients. CONCLUSIONS: HCP perceptions of GoC did not agree with patients’ reported GoC. This study suggests the need for the design and validation of interventions to improve HCPs’ understanding of their patients’ GoC.