In 1997, a national program of The Robert Wood Johnson Foundation, Promoting Excellence in End-of-Life Care, received 678 Letters of Intent in response to a Call for Proposals for fewer than 25 grants. To tap this tremendous outpouring of interest and enthusiasm for extending palliative care to diverse patient populations, the Promoting Excellence team created a National Learning Community composed of peer workgroups. These workgroups have gathered clinicians and researchers who are working to extend palliative care to special populations of patients in various niches of medicine.
The Promoting Excellence team looked for realms of health care that manifested a critical patient need and openness to implementing palliative care strategies. Key stakeholder groups - including professional associations, thought leaders, and the best clinician-researchers in each field - were invited to participate.
Each workgroup was asked to assess the existing evidence base; to identify resources, gaps, and products for the field; and to develop a Research and Development Agenda. The Promoting Excellence theory was that recommendations developed by such workgroups, acting in good faith on behalf of their professions and patients, would have strong credibility and a good chance of implementation nationwide. Such recommendations could give policy makers and health system planners a road map for substantive change. In addition to the End-Stage Renal Disease (ESRD) Workgroup, seven others were created to include: The Children’s International Project on Palliative/Hospice Services (ChIPPS); Critical Care; Amyotrophic Lateral Sclerosis (ALS); Cost Accounting; Surgeons Palliative Care; HIV/AIDS; and Huntington’s Disease. While some workgroups have completed their work, other groups plan to carry forward work begun under the auspices of the Promoting Excellence Program.
The ESRD Workgroup was chaired by Alvin H. Moss, MD, Director of the West Virginia University Center for Health Ethics and Law and a nephrologist at West Virginia University School of Medicine. The workgroup consisted of 23 members, including nine nephrologists, four nephrology nurses, three nephrology social workers, three palliative care physicians, two end-stage renal disease (ESRD) patients (one of whom is an attorney), one ESRD network executive director, one dialysis unit administrator, and one renal dietitian (see Appendix A). Meeting from March 2000 to October 2001, the workgroup completed its charge and made considerable progress in bringing palliative care issues to the attention of the nephrology community. For example, the Chair of the American Board of Internal Medicine Subspecialty Board on Nephrology invited the group to submit questions on end-of-life care for the board certification examination. For the first time, five items with palliative and end-of-life care content are included in the 2002 examination. In addition, the Renal Physicians Association (RPA) and the American Society of Nephrology (ASN) revised their joint position statement on Quality Care at the End of Life, building upon resources from the ESRD Workgroup and encompassing salient workgroup recommendations.
Key accomplishments of the Promoting Excellence ESRD Workgroup include:
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