The overarching goal of the United States Renal Data System (USRDS) Special Study Center on Palliative and End-of-Life Care will be to provide the nephrology community with novel, rigorous and nationally representative information about a domain of end-stage renal disease (ESRD) care for which little information is currently available to guide policy and practice. The median survival of US adults with ESRD is approximately 36 months and far less than this for the growing number of very elderly patients initiating dialysis. Both younger and older patients with ESRD shoulder a significant burden of comorbidity, disability and frailty, while healthcare utilization and costs are exceedingly high. These realitie signal a growing need for a more comprehensive approach to ESRD care that integrates existing disease-based models with a more palliative patient-centered approach intended to relieve suffering and optimize quality of life. National rates of hospice use are extremely low among patients receiving chronic dialysis and rates of invasive interventions during the final month of life are much higher than for patients with other chronic life-limiting conditions, suggesting that there may be a systematic failure to recognize and respond to end-of-life care needs for patients with ESRD. Evidence from single center studies suggest that patients with ESRD have overly optimistic expectations about their prognosis and very low rates of advance care planning;these findings highlight a critically important opportunity to reshape patterns of end-of-life care to better align with patient values, goals and preferences and to reduce unwanted high intensity care at the end of life. There have been no national studies of palliative and end-of-life care in patients with ESRD. Single center studies have been largely cross-sectional, and thus have not examined factors that shape downstream patterns of end-of-life care. To address these knowledge gaps we propose an integrated research agenda to address the following specific aims: 1) to evaluate the palliative care needs, quality of communication about end-of-life care, prognostic expectations, and readiness to engage in advance care planning among a nationally representative sample of ESRD patients;2) to evaluate the end-of-life experience of a representative national sample of US adults with ESRD and their families;and 3) to assess the relationship between advance directives and palliative care consultations with downstream healthcare utilization and costs in patients with ESRD. We will conduct prospective observational studies among national cohorts of ESRD patients and their family members and complementary secondary analyses of existing USRDS data sources to accomplish these aims. Collectively, we anticipate that the work proposed here will help to identify novel opportunities for improvement and future intervention to enhance the quality of palliative and end-of-life care in patients with ESRD and will serve as an enduring resource for the renal community to support ongoing work in this area.
The overarching goal of the USRDS Special Study Center on Palliative and End-of-Life Care is to provide the nephrology community with novel, rigorous and nationally representative information about a domain of end- stage renal disease (ESRD) care for which little information is currently available to guide policy and practice. The Center will collect and analyze information on patterns of care and patient and family experiences toward the end-of-life among a national cohort of patients undergoing treatment with chronic dialysis or kidney transplant for their ESRD. We anticipate that the work proposed here will help to identify opportunities to ensure that end-of-life care for members of this vulnerable population is in line with their preferences.