Legal and Ethical Concerns in Treating Kidney Failure: Case Study Workbook PDF
Preview Legal and Ethical Concerns in Treating Kidney Failure: Case Study Workbook
Legal and Ethical Concerns in Treating Kidney Failure LEGAL AND ETHICAL CONCERNS IN TREATING KIDNEY FAILURE Case Study Workbook Edited by Eli A. Friedman State University of New York, Health Science Center at Brooklyn, NY, U.S.A. SPRINGER-SCIENCE+BUSINESS MEDIA, B.V. A C.LP. Catalogue record for this book is available from the Library of Congress. ISBN 978-94-010-5875-9 ISBN 978-94-011-4355-4 (eBook) DOI 10.1007/978-94-011-4355-4 Printed on acidjree paper AII Rights Reserved © 2000 Springer Science+Business Media Dordrecht Originally published by Kluwer Academic Publishers in 2000 Softcover reprint ofthe hardcover Ist edition 2000 No part of the material protected by this copyright notice may be reproduced or utilized in any form Of by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without written permission from the copyright owner. Dedication Mildred (Barry) Friedman, my wife of forty years, was the stimulus for often troubled thinking that conceived, nurtured, and ultimately gave birth to this book. Barry's innate morality combined with exceptional insight into those forces, virtuous and dark, that drive us to do what we do, unmasked behavior patterns that I might have denied existed. Barry, a diabetic kidney transplant recipient, devoted her energy and considerable writing ability to improving the welfare and life quality of kidney patients. Reading her comments on Cases 1 through 22 is unnerving as it is as if Barry is in the room sharing her wisdom with ease, as was her habit. Barry died before submitting her analyses of Cases 23 and 24 though I have learned so much from her that I can almost hear what she intended to say and incorporated these inferences into my comments. Table of Contents List of Contributors ix Preface xiii Foreword John Bower, Brown versus Bower - The Rest of the Story 1 Foreword Robert J. Pristave 4 How to Use this Workbook 5 Kidney Donation by Children and the Mentally Handicapped: Evolution of precedent / Robert J. Pristave, J.D. and Katie l. Watson, J.D. 7 CASE 1: WITHDRAWAL FROM DIALYTIC THERAPY 17 CASE 2: FAILURE TO UNDERSTAND DIALYTIC THERAPY 30 CASE 3: DISRUPTIVE PATIENT 42 CASE 4: ACTIVE HEROIN ABUSE 51 CASE 5: NO DIALYSIS FOR AIDS NEPHROPATHY 60 CASE 6: FUTILE DIALYSIS 71 CASE 7: PHYSICIAN BIAS 79 CASE 8: SELF REFERRAL OF DIALYSIS PATIENTS 85 CASE 9: GAME PLAYING FAMILIES 92 CASE 10: PHYSICIAN REFUSAL OF HIV+ PATIENTS 97 CASE 11: RELIGIOUS CONTROL OF PATIENT 104 CASE 12: EMOTIONALLY RELATED ORGAN DONATION 112 CASE 13: DISCRIMINATION IN ORGAN DONATION 118 CASE 14: "GIFT" FOR TRANSPLANT PRIORITY 124 CASE 15: CHILD TO PARENT KIDNEY 137 CASE 16: PURCHASED KIDNEY 137 CASE 17: SUSPECTED SUBTERFUGE IN PROPOSING KIDNEY DONOR 143 CASE 18: ACCEPTING ORGAN FROM MENTALLY DEFICIENT DONOR 149 CASE 19: CONSENT FROM CHILD FOR ORGAN DONATION 158 CASE 20: DONOR KIDNEY ALLOCATION TO HIGH RISK PATIENT 167 CASE 21: POLITICIAN'S PRIORITY FOR CADAVER DONOR KIDNEYS 176 CASE 22: CADAVER DONOR KIDNEY FOR NON-COMPLIANT DIALYSIS PATIENT 184 CASE 23: ORGAN DONATION/ACCEPTANCE BY ORTHODOX JEWS 192 CASE 24: HOPELESS PROGNOSIS 199 Editor's Remarks 206 Editor's Epilogue 209 References 211 CONTRIBUTORS John D. Bower, M.D. Professor of Medicine Chief, Division of Nephrology and Hypertension University of Mississippi Medical Center Jackson, Mississippi Judith E. Columbo* Secretary, Renal Disease Division State University of New York Health Science Center at Brooklyn Treasurer, Mildred (Barry) Friedman Chapter American Association of Kidney Patients Amy L. Friedman, M.D. Assistant Professor of Surgery Department of Surgery Yale University, College of Medicine New Haven, Connecticut IX Eli A. Friedman, M.D. Chairman, Medical Advisory Board American Association of Kidney Patients Distinguished Teaching Professor Department of Medicine State University of New York Health Science Center at Brooklyn Brooklyn, New York Mildred (Barry) Friedman meceased)* President, Diabetic Kidney Transplant Self-Help Group Columnist, Renal Family American Association of Kidney Patients Brooklyn, New York Carl M. Kjellstrand M.D., Ph.D. Adjunct Professor State University of New York Health Science Center at Brooklyn and University of Alberta, Clinical Professor Loyola University Medical School Vice President Medical Affairs AKSYS Corporation Lincolnshire, Illinois Monique Janelle London, J.D. * Board of Directors American Association of Kidney Patients Patient Affairs Committee United Network for Organ Sharing Consumer Action Committee ESRD Network 17 San Francisco, California x Robert J. Pristave, B.A., J.D. Chairman, Health Care Department Senior Partner Ross & Hardies Counsel, Renal Physicians Association Chicago, Illinois Katie L. Watson, B.A., J.D. Associate, Health Care Department Ross & Hardies Senior Fellow University of Chicago/Pritzker School of Medicine MacLean Center for Clinical Medical Ethics Board Member, Chicago Clinical Ethics Programs Chicago, Illinois Connie Zuckerman, J .D. Formerly, Assistant Professor Of Humanities in Medicine and Family Medicine Coordinator of Legal Studies Division of Humanities in Medicine State University of New York Health Science Center at Brooklyn Brooklyn, New York Bioethics Consultant White Plains, New York * Kidney transplant recipient xi PREFACE Eli A. Friedman, M.D. Attendance at our Renal Disease Division's Morning Report almost immedi- ately illustrates the pervasive intermixing of medicine, law, and ethics compris- ing the everyday practice of nephrology. Situated in the inner-city, we manage more than 250 newly presented patients in end-stage renal disease lESRD) annually. Throughout the 1960s, we gradually appreciated the impact of Beld- ing Scribner's formulation of a regimen for life prolongation after kidney failure. Estimates of the number of Americans who might benefit from ESRD therapy suggested a top limit of about 50,000 patients. To be accepted by a dialysis pro- gram one had to be between age 18 and 45, employed or a full time student, have renal disease and no other serious disorder, and be a US citizen. Obvious, in retrospect, the majority of suitable candidates for life extension after onset of kidney failure were never referred to the few kidney centers and of those evalu- ated, a selection process chose those who were considered most suitable while the remainder died. As program after program confirmed Scribner's report, the number of treated ESRD patients began to rise sharply a growth stimulated by the incredible passage of legislation to include renal failure as a Medicare funded therapy. Removing any arbitrary upper restriction on the number of treated dialysis patients prompted a remarkable expansion in the number of facilities and the intrusion of established and new corporations as dialysis providers. By the 1980s, ESRD was big business with some entrepreneurs able to generate tens of millions of profit dollars as total Medicare expenditures passed $2 billion. Throughout the last decade of the 20th Century, ESRD therapy continued to increase at an annual rate of about 9%. Incident patients were of progressively older age and were likely to be afflicted by diabetes and geriatric disorders. Advances in immunosuppression made the transplant experience attractive with a first-year cadaver functional graft rate above 90%. Peritoneal dialysis, encouraged by many nephrologists was viewed as a satisfactory - if not pre- ferred - modality for many ESRD patients. Thus, nor only availability of any ESRD treatment but application of the preferred modality became concerns for the renal team. With universal acceptance for ESRD therapy, the obverse issue of who would be best untreated emerged. Were there rational criteria for deny- ing treatment in cancer, old age, or extreme debility? Should the expense of ESRD therapy be restricted to citizens? Are parents able to consent to removal (donation) of a child's kidneys? These and other bothersome challenges stimulated my preparation of the present volume. After knocking on doors of consultants including the hospital counsel, ethics committee, and multi-denominational clergy, I was left dissatisfied with the failure to provide lucid and understandable guidance. I came to respect the term psychobabble. Lessons learned while substituting for one vital organ might- at least in large part - be transposed to other organ systems. Examina- tion of the legal and ethical ramifications of renal replacement therapy offers insight into what is to be expected in the near future when liver, heart, and lung Xlll substitution become routine medicine. The 24 "hypothetical" cases submitted for your analysis derive from my actual practice of nephrology. Details have been modified to emphasize a single issue in most instances. By resort to lawyers, medical doctors, and articulate patient advocates each an expert with a record of excellence, it is my intent to assemble the best answers that might be synthesized. The reader is encouraged to study each case and write an opinion before seeing the resolutions of others. If in the process you are stimulated to think about what was otherwise routine, I will have succeeded. substitution become routine medicine. The 24 "hypothetical" cases submitted for your analysis derive from my actual practice of nephrology. Details have been modified to emphasize a single issue in most instances. By resort to lawyers, medical doctors, and articulate patient advocates each an expert with a record of excellence, it is my intent to assemble the best answers that might be synthesized. The reader is encouraged to study each case and write an opinion before seeing the resolutions of others. If in the process you are stimulated to think about what was otherwise routine, I will have succeeded. XIV
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