In 2002 the Robert Wood Johnson Foundation published the report, Completing the Continuum of Nephrology Care: Recommendations to the Field, prepared by the Promoting Excellence in End-of-Life Care ESRD Peer Workgroup. The ESRD Workgroup consisted of nine nephrologists, four nephrology nurses, three nephrology social workers, three palliative care physicians, two end-stage renal disease (ESRD) patients, one ESRD network executive director, one dialysis unit administrator, and one renal dietitian. One of the subgroups of this ESRD Peer Workgroup, the Education Subgroup, assessed the current state of knowledge of renal palliative care among those in the nephrology community.

The Education Subgroup found the following:

1. The absence of ESRD-specific books or chapters on palliative care.
2. A gap in the curriculum for nephrology training programs with regard to palliative care resulting in significant gaps in nephrologists’ knowledge, attitudes, and practice skills relating to renal palliative care and end-of-life care.
3. A culture of death denial in dialysis units among nephrologists, staff, patients and families.
4. A partial relevance of the American Medical Association’s Education for Physicians on End-of-Life Care (EPEC) program for nephrologists and other physicians who treat ESRD patients. The Education Subgroup believed that the ESRD population is specialized enough that a modification of the EPEC program is needed. The subgroup named this specialized training for nephrologists, Education for Nephrologists in End-of-Life Care (ENEC).

To address these findings, the Education Subgroup identified core areas that should be addressed in an ENEC curriculum:

• The Special Relevance of End-of-Life Care to the Nephrology Community
• Communicating Bad News
• Advance Care Planning
• Pain Management
• Common Physical Symptoms
• Incorporating End-of-Life Care into Your Dialysis Unit

The subgroup identified a target audience for educational interventions regarding ESRD patient end-of-life care including the following:

1. Nephrologists
2. Nephrology fellows
3. Government agencies responsible for ESRD, including the Centers for Medicare and Medicaid Services
4. Corporations owning multiple dialysis units
5. Patients and families
6. Dialysis nurses, social workers, dietitians, and other dialysis staff and trainees

The Education Subgroup made the following recommendations:

• Using ENEC as a starting point, nephrology educators should develop a curriculum to instruct members of the renal care team in palliative care.
• Using ENEC as a starting point, nephrology educators should develop a "train the trainers" course for Program Directors, Network Medical Review Board Chairs, and medical directors of dialysis units.
• Nephrology educators should include training in palliative care in nephrology fellowship programs, Nephrology Board review courses, and nephrology textbooks.
• Nephrology educators should include questions on palliative care in Nephrology Board certification examinations.
• Using ENEC as a starting point, nephrology educators should develop a curriculum on end-of-life care of the dialysis patient for nephrology nurses, social workers, dietitians, and technicians. When all members of the renal care team are knowledgeable about end-of-life care, the team can provide multidisciplinary, comprehensive treatment.

POWERPOINT PRESENTATIONS

The following Powerpoint slides from the ENEC curriculum were modified from the American Medical Association’s Educational Program for Physicians on End-of-Life Care (EPEC) and expanded by the Education Subgroup of the ESRD Peer Workgroup. Nephrologists who participated on this subgroup included Drs. Richard Dart, Michael Germain, Jean Holley, Alvin Moss, Marilyn Pattison, Mohammed Abed Sekkarie, and Richard Swartz. The slides may be viewed individually by nephrologists or nephrology nurses or used in conjunction with local or regional educational programs for nephrology clinicians. The ESRD Workgroup recommends that dialysis units incorporate renal palliative care incrementally. It may be easiest to start with pain assessment and management and add other components gradually. View the Powerpoint Presentations and download.