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End-Stage Renal Disease Workgroup

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Mission Statement: To improve supportive care and quality of life for ESRD patients and their families.

The End-Stage Renal Disease (ESRD) Workgroup worked to improve supportive care and quality of life for dialysis patients from Spring 2000 - Spring 2002. Chaired by Alvin Moss, MD (Director of the West Virginia University Center for Health Ethics and Law), this workgroup consisted of 23 members including nurses, social workers, nephrologists, and kidney transplant recipients. To accomplish its goals, the workgroup divided into three subgroups -- Education, Quality of Life, and Quality of Dying.

The ESRD Workgroup made considerable progress in bringing palliative care issues to the attention of the nephrology community, including an invitation from the Chair of the American Board of Internal Medicine Subspecialty Board on Nephrology to submit questions on end-of-life care for the board certification examination. In addition, the Renal Physicians Association (RPA) and the American Society of Nephrology's (ASN) joint Quality Patient Care Committee meeting revised their position statement on Quality Care at the End-of-Life to incorporate workgroup findings in the Fall of 2001. This revised position statement has been widely circulated.

The ESRD Workgroup completed its work with the support of The Robert Wood Johnson Promoting Excellence program in the winter of 2002, with finalization of a Recommendations to the Field summary that was widely disseminated in Fall 2002.

In 2003, palliative care in end stage renal disease and the work of the Promoting Excellence in End-of-Life Care ESRD Workgroup were featured in three nephrology journal articles. The workgroup's final document, "Completing the Continuum of Nephrology Care - the End-Stage Renal Disease Peer Workgroup Recommendations to the Field," was highlighted in a 5-page article in the February 2003 issue of Nephrology News & Issues (Vol. 17, No. 3). A commentary on the report by Bruce Bartlow, M.D., followed in the March 2003 Nephrology News & Issues publication (vol. 17, No. 4). The February issue of Nephrology Nursing Journal (Vol. 30, No.1) also recapped the report for its reading audience. While the workgroup will no longer meet, future publications and the continued development of resources and curriculums are underway. For example, workgroup members are working on a core curriculum on ethics and end-of-life care for nephrology training programs that will be published in a future issue of the American Journal of Kidney Diseases (noted April 2003).

Workgroup Products

  • ESRD Workgroup Recommendations to the Field summary presents findings and resources, makes recommendations, and indicates the need for further research to advance palliative care and quality of life for patients with end-stage renal disease and their families.

  • Quality of Life Tools

  • Creation of Model Do Not Resuscitate Policy for Dialysis Units for use by individual and corporate dialysis units by Quality of Dying Subcommittee. (See ESRD Workgroup Recommendations to the Field above.)

  • Results Analysis of national Focus Groups with dialysis patients and bereaved families from various ethnic and geographic backgrounds to determine what is really important to them at life's end. (See ESRD Workgroup Recommendations to the Field above.)

  • PowerPoint Presentation of adaptation of Physician Education in End-of-Life Care to Nephrology [ENEC] (presented at the Renal Physicians Association Meeting in March 2002) with accompanying pre- and post-tests.

  • Syllabus of "End of Life Care in Nephrology: Supportive Care for the Renal Patient: Modern Palliative Care Principles Applied to the ESRD Patient" presented at the American Society of Nephrology and World Congress of Nephrology, Oct. 2001.

  • A bibliography of reference materials relating to palliative care for ESRD patients.
    Download the bibliography here pdf PDF 103 KB / 18 pages.

  • Consultation to Program Directors of Nephrology Fellowship programs to encourage inclusion of palliative care into core curriculum topic areas.

  • Training Session for the Forum of ESRD Networks and Centers for Medicare and Medicaid Services on end-of-life care and why end-of-life care should be part of the conditions for Medicare participation of dialysis units. The recommendation was for dialysis units to show evidence of palliative care as part of long-term care planning for ESRD patients.

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families.