(See Appendix D for a more complete discussion and products.)
The Education subgroup used the following methods to assess the current state of knowledge of renal palliative care among those in the nephrology community:
- A review of the literature, including identification of articles, book chapters, and the extensive evidence-based literature search by the RPA/ASN Committee that drafted the Clinical Practice Guideline “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis”;
- Consensus in the group about the nephrology community’s limited knowledge of palliative care; and
- Informal surveys of nephrology colleagues and nephrology training programs.
The Education subgroup found the following:
- There are no ESRD-specific books or chapters on palliative care.
- A gap in the curriculum for nephrology training programs has resulted in significant gaps in nephrologists’ knowledge, attitudes, and practice skills relating to renal palliative/supportive care. Although the major nephrology societies have recently begun to address these issues through symposia (see Appendix D) and evidence-based guidelines (i.e., RPA/ASN Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis Clinical Practice Guideline, Feb. 2000), nephrology fellowship programs generally fail to include renal palliative/supportive care in their curricula.
- A culture of death denial prevails in dialysis units among nephrologists, staff, patients, and families.
- The American Medical Association Education for Physicians on End-of-Life Care (EPEC) program is partially relevant to ESRD but more focused on cancer patients. 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).
The subgroup identified a target audience for educational interventions regarding ESRD patient end-of-life care composed of the following:
- Nephrology fellows
- Government agencies responsible for ESRD, including the Centers for Medicare and Medicaid Services
- Corporations owning multiple dialysis units
- Patients and families, and
- Dialysis nurses, social workers, dietitians, and other dialysis staff and trainees.
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Promoting Excellence in End-of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit PromotingExcellence.org for more resources.