Since 1972, many victims of endstage renal disease (ESRD) have received treatment under a unique Medicare entitlement. This book presents a comprehensive analysis of the federal ESRD program: who uses it, how well it functions, and what improvements are needed.

The book includes recommendations on patient eligibility, reimbursement, quality assessment, medical ethics, and research needs.

Kidney Failure and the Federal Government offers a wealth of information on these and other topics:

• The ESRD patient population.
• Dialysis and transplantation providers.
• Issues of patient access and availability of treatment.
• Ethical issues related to treatment initiation and termination.
• Payment policies and their relationship to quality of care.

Contents

• COMMITTEE FOR THE STUDY OF THE MEDICARE ESRD PROGRAM
• ACKNOWLEDGMENTS
• PART I. OVERVIEW
  • Summary
    • The Congressional Charge to the Institute of Medicine
    • Basic Assumptions
    • ESRD Patients and Their Treatment
    • Access
    • Ethics
    • The Provider Community
    • Reimbursement and Quality
    • Quality Assessment and Assurance
    • Data Systems
    • Research
    • References
  • 1. Introduction
    • The Congressional Charge
    • Basic Assumptions
    • Context of this Study
    • Study Methods
    • The ESRD Patient Population
    • National Expenditures for ESRD
    • Organization of the Report
    • References
• PART II. PATIENTS AND PROVIDERS
  • 2. Perspectives of ESRD Patients
    • Experiences with Renal Failure
    • Economic Effects of Kidney Failure
    • Conclusions
    • Reference
  • 3. Ethical Issues
    • Patient Acceptance Criteria
    • Withdrawal from Treatment
    • Treating the Problem Patient
    • Conclusions and Recommendations.
    • References
  • 4. The Patient Population
    • Incidence and Prevalence
    • Composition of the ESRD Population
    • Mortality Issues
    • State and Regional Mortality Data
    • Cross-National Mortality Data
    • Projections to the Year 2000
    • References
  • 5. The ESRD Patient Population: Special Groups
    • Pediatric Patients
    • Elderly ESRD Patients
    • Diabetic Patients
    • Hypertensive Patients
    • Minority Patients
    • Conclusion
    • References
  • 6. Structure of the Provider Community
    • Overview
    • Changing Structure of the Outpatient Dialysis Community
    • Conclusions
    • References
• PART III. ACCESS
  • 7. Access Problems of ESRD Patients
    • ESRD Patients not Eligible for Medicare
    • Medicare-Eligible ESRD Patients
    • State Regulations
    • References
    • Appendix
  • 8. Access to Kidney Transplantation
    • Overview
    • The Medicare Kidney Transplant Benefit
    • Distribution of Kidney Transplants
    • Supply of Donor Organs
    • Conclusions and Recommendations
    • References
    • Appendix
• PART IV. REIMBURSEMENT AND QUALITY
  • 9. Medicare ESRD Payment Policy
    • Kidney Transplant Services
    • Outpatient Dialysis Services
    • Inpatient Dialysis Services
    • References
  • 10. Reimbursement Effects on Quality
    • Effects of Reimbursement on Mortality
    • Effects of Reimbursement on Hospitalization
    • Effects of Reimbursement on Unit Staffing
    • Effects of Reimbursement on Innovation
    • Summary
    • Conclusions
    • References
  • 11. Outpatient Dialysis Reimbursement Issues
    • Covered Services in the Composite Rate
    • The Rate-Setting Process
    • Facility Payment Policy Issues
    • Physician Payment Policy Issues
    • Conclusions and Recommendations
    • References
    • Appendix 1
    • Appendix 2
  • 12. Quality Assessment and Assurance
    • Principles of QA
    • Thinking About Quality
    • Responsibilities of Federal Agencies
    • Continuous Quality Improvement
    • Conclusions and Recommendations
    • References
    • Appendix 1 Quality of Care in ESRD: an Example of a Proximate Clinical Indicator
    • Appendix 2 Examples of ESRD Quality Assurance
• PART V. DATA AND RESEARCH
  • 13. Data Systems
    • Health Care Financing Administration
    • U.S. Renal Data System
    • United Network for Organ Sharing
    • National End-Stage Renal Disease Registry
    • Adequacy of Data Systems
    • Recommendations
    • References
  • 14. Research Needs
• APPENDIXES
  • A Glossary
  • B Acronyms and Initialisms
  • C Commissioned Papers and Contractor Reports
  • D Survival Analysis Methods for the End-Stage Renal Disease (ESRD) Program of Medicare
  • E Institute of Medicine ESRD Study Committee Public Hearing, May 5, 1989, Chicago, Illinois
  • F Institute of Medicine ESRD Study Committee Public Hearing on ''Issues in Dialysis Reimbursement Rate-Setting,'' February 15, 1990, Washington, D.C.
  • G Institute of Medicine ESRD Study Committee Workshop on ESRD Staffing, November 3, 1989, Washington, D.C.
  • H Institute of Medicine ESRD Study Committee Workshop on Kidney Transplantation, December 13, 1989, Washington, D.C.
  • I Institute of Medicine ESRD Study Committee Workshop on Black and Other Nonwhite ESRD Patients, May 15, 1990, Washington, D.C.
  • J Institute of Medicine ESRD Study Committee ESRD Patient Focus-Group Participants

This study was supported by the Health Care Financing Administration, U.S. Department of Health and Human Services, under Cooperative Agreement No. 14-C-99338/3-02.

NOTICE: The project that is the subject of this report and its technical appendixes was approved by the Governing Board of the National Research Council, whose member are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for this report were chosen for their special competencies and with regard for appropriate balance.

The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education.