Do patients receiving hemodialysis regret starting dialysis? A survey of affected patients
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AIMS: End-stage renal disease (ESRD) is associated with high morbidity and mortality. A prior study showed that many Canadian patients regretted their decision to start dialysis. We sought to determine if US patients also regretted dialysis. MATERIALS AND METHODS: We surveyed hemodialysis patients within 55 miles of Rochester, MN, with a 25-question survey about their perceptions of their health, preparedness for dialysis, advance care planning, and regrets about starting dialysis. Surveys were administered in person at the patients' usual dialysis session from July 1 through December 1, 2014; responses were captured electronically. RESULTS: Of the 198 eligible patients, 128 participated (70% men); 80% received dialysis for more than 1 year; 38% reported their health and 58% described their quality of life as "good" or "very good"; 51% had started dialysis in the hospital; and 68% agreed they were prepared for what to expect. Only 35% of patients reported being offered supportive care without dialysis. Most patients (82%) recalled a discussion about prognosis. Only 43% completed an advance directive, but 72% thought it was at least "very important" to plan for the end of life. Nine (7%) reported regretting the decision to start dialysis. CONCLUSIONS: Most of our patients were optimistic about their health and prognosis. Few regretted the decision to start dialysis.
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Prevalence and Contents of Advance Directives of Patients with ESRD Receiving Dialysis.

BACKGROUND AND OBJECTIVES: ESRD requiring dialysis is associated with increased morbidity and mortality rates, including increased rates of cognitive impairment, compared with the general population. About one quarter of patients receiving dialysis choose to discontinue dialysis at the end of life. Advance directives are intended to give providers and surrogates instruction on managing medical decision making, including end of life situations. The prevalence of advance directives is low among patients receiving dialysis. Little is known about the contents of advance directives among these patients with advance directives. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We retrospectively reviewed the medical records of all patients receiving maintenance in-center hemodialysis at a tertiary academic medical center between January 1, 2007 and January 1, 2012. We collected demographic data, the prevalence of advance directives, and a content analysis of these advance directives. We specifically examined the advance directives for instructions on management of interventions at end of life, including dialysis. RESULTS: Among 808 patients (mean age of 68.6 years old; men =61.2%), 49% had advance directives, of which only 10.6% mentioned dialysis and only 3% specifically addressed dialysis management at end of life. Patients who had advance directives were more likely to be older (74.5 versus 65.4 years old; P<0.001) and have died during the study period (64.4% versus 46.6%; P<0.001) than patients who did not have advance directives. Notably, for patients receiving dialysis who had advance directives, more of the advance directives addressed cardiopulmonary resuscitation (44.2%), mechanical ventilation (37.1%), artificial nutrition and hydration (34.3%), and pain management (43.4%) than dialysis (10.6%). CONCLUSIONS: Although one-half of the patients receiving dialysis in our study had advance directives, end of life management of dialysis was rarely addressed. Future research should focus on improving discernment and documentation of end of life values, goals, and preferences, such as dialysis-specific advance directives, among these patients.