A survey of views and practice patterns of dialysis medical directors toward end-of-life decision making for patients with end-stage renal disease.

BACKGROUND: Patients with end-stage renal disease report infrequent end-of-life discussions, and nephrology trainees report feeling unprepared for end-of-life decision making, but the views of dialysis medical directors have not been studied. AIM: Our objective is to understand dialysis medical directors' views and practice patterns on end-of-life decision making for patients with ESRD. DESIGN: We administered questionnaires to dialysis medical directors during medical director meetings of three different dialysis organizations in 2013. Survey questions corresponded to recommendations from the Renal Physicians Association clinical practice guidelines on initiation and withdrawal of dialysis. SETTING/PARTICIPANTS: There were 121 medical director respondents from 28 states. RESULTS: The majority of respondents felt "very prepared" (66%) or "somewhat prepared" (29%) to participate in end-of-life decisions and most (80%) endorsed a model of shared decision making. If asked to do so, 70% of the respondents provided prognostic information "often" or "nearly always." For patients with a poor prognosis, 36% of respondents would offer a time-limited trial of dialysis "often" or "nearly always", while 56% of respondents would suggest withdrawal from dialysis "often" or "nearly always" for those with a poor prognosis currently receiving dialysis therapy. Patient resistance and fear of taking away hope were the most commonly cited barriers to end-of-life discussions. CONCLUSION: Views and reported practice patterns of medical directors are consistent with clinical practice guidelines for end-of-life decision making for patients with end-stage renal disease but inconsistent with patient perceptions.

The chronic disease self-management program--A pilot study in patients undergoing hemodialysis.

A strong emphasis on self-management for health maintenance in a variety of chronic diseases has been shown to benefit patients' outcomes and quality of life. However, little has been published on such programs in patients with chronic kidney disease. We studied the feasibility and effectiveness of the Chronic Disease Self-Management Program (CDSMP) in 14 patients with ESRD undergoing conventional hemodialysis. This program is designed to enhance skills in the areas of medical, emotional, and role management. Outcome measures in health status, self-management behaviors, self-efficacy, and health care utilization were evaluated through use of questionnaires at baseline and after six months.