Table Of Content

EDUCATING, EVALUATING, AND SELECTING LIVING KIDNEY DONORS EDUCATING, EVALUATING, AND SELECTING LIVING KIDNEY DONORS Edited by Robert W. Steiner University of California, UCSD Center for Transplantation, San Diego, U.S.A. KLUWER ACADEMIC PUBLISHERS NEW YORK,BOSTON, DORDRECHT, LONDON, MOSCOW eBookISBN: 1-4020-2276-X Print ISBN: 1-4020-1271-3 ©2004 Kluwer Academic Publishers NewYork, Boston, Dordrecht, London, Moscow Print ©2004 Kluwer Academic Publishers Dordrecht All rights reserved No part of this eBook maybe reproducedor transmitted inanyform or byanymeans,electronic, mechanical, recording, or otherwise, without written consent from the Publisher Created in the United States of America Visit Kluwer Online at: http://kluweronline.com and Kluwer's eBookstoreat: http://ebooks.kluweronline.com Table of Contents Foreword vii Chapter One Ethical Approaches to Living Kidney Donor Education and Acceptance Robert W. Steiner, M.D., William M. Bennett, M.D. and Bernard Gert, Ph.D. 1 Chapter Two Quality of Life and Survival on Dialysis and after Renal Transplantation Paul A. Keown, M.D., DSc., M.B.A. 13 Chapter Three Outcomes for Living Donor and Cadaver Donor Kidney Transplantation Pablo Ruiz-Ramón, M.D. and Lawrence Hunsicker, M.D. 35 Chapter Four The Medical Evaluation and Risk Estimation of End Stage Renal Disease for Living Kidney Donors Robert W. Steiner, M.D. and Gabriel Danovitch, M.D. 51 Chapter Five The Risk of End Stage Renal Disease for Hypertensive Kidney Donors Scott R. Mullaney, M.D. and Michael G. Ziegler, M.D. 81 Chapter Six Risk of Diabetes and Diabetic Nephropathy David M. Ward, M.D. 99 Chapter Seven The Education and Counseling Process for Potential Donors and Donor Attitudes after Living Kidney Donation Robert W. Steiner, M.D. and Christine A. Frederici, L.C.S.W. 129 Chapter Eight Attitudes, Practices, and Ethical Positions among Transplant Centers Concerning Living Kidney Donor Selection Aaron Spital, M.D. 141 Index 157 v Foreword This book is intended to provide information and policy and procedure suggestions for centers that perform living donor kidney transplantation. Its purpose is not to argue either for kidney donation for any candidate or against donation for most candidates, but rather to help make the donation process well considered regard- less of individual decisions. We look forward to an ongoing effort that will improve and expand the offerings in this volume, to promote defensible kidney donor education, evaluation, and selection. The Authors vii Chapter One Ethical Approaches to Living Kidney Donor Education and Acceptance Robert W. Steiner, M.D., William M. Bennett, M.D. and Bernard Gert, Ph.D. Summary Points • The center’s desire to perform transplants creates a conflict of interest that it must explicitly address. • In evaluating a donor, ethical issues should be distinguished from factual ones and approached accordingly. • The medical question is always the degree of risk, not whether donation is (safe) for the donor. • To accept living kidney donors, centers must have good reason to believe that they are: (1) informed, (2) acting freely, and (3) acting rationally. • Willing, informed, and rational donors at increased risk can only be rejected if acceptance would unavoidably erode the standards of the center or engender public suspicion of the selection process. • Centers must distinguish rejecting a donor due to increased medical risk from rejecting a donor who is inadequately informed or for whom the risk is truly unknown. • The donor’s decision must be reasonable (rational) for him, but it does not have to be the decision that the donor counselor or many others would make in the same situation. • Transplant centers are held to a higher standard for determining donor suit- ability, compared to self interested supporters of other activities involving personal risk in our society. 1 R.W. Steiner (ed.), Educating, Evaluating, and Selecting Living Kidney Donors, 1–12. ©2004 Kluwer Academic Publishers. Printed in the Netherlands. 2 ROBERT W. STEINER ET AL. This chapter will discuss the ethically acceptable reasons and procedures for accepting or rejecting living kidney donors. By so doing, we hope to clarify ethical debate by framing the appropriate fundamental issues. The chapter will not settle all ethical debate, as ethically sensitive and conscientious individuals may still differ in difficult cases. Our aim nevertheless is that even when individuals disagree on the acceptability of specific donors, they will still agree on the general fundamental ethical principles which must be satisfied for donor acceptance or rejection. It is essential to distinguish ethical issues from factual ones. When an individual claims that donors should be rejected if they are being pressured to donate, he is providing a valid ethical reason. The factual question is whether a donor is actually being pressured to donate. Facts can be determined by investigation. Ethical dis- agreements are argued by considering clear cases in which we all agree, and then applying those formulations of appropriate ethical reasoning to difficult cases. Other chapters in this book deal primarily with factual issues surrounding living donor transplantation. This chapter deals primarily with what we suggest are the appropriate ethical considerations. Living kidney transplantation has long been regardedasadifficult area ethically. In the process of living kidney donation, the center must put the donor in harm’s way both with the inevitable perioperative risks and discomfort and the long term risk incurred by having one kidney instead of two. In contrast, medical professionals are accustomed only to helping patients directly or to harming a patient in order to help the same patient – as with surgery to remove a tumor. To further complicate matters, transplant professionals have conflicts of interest since transplantation benefits a third party, the recipient, for whom they have both altruistic concern and ongoing medical responsibility before and after transplantation. The transplant center is also compensated both financially and by the increased prestige that a busy transplant program generates. Finally, that same center is charged with the responsibility of informing as many potential donors as possible about living kidney donation, so that some may then wish to come forward to be considered for donation. The center must then continue to educate those donors and test, counsel, and accept or reject them for donation. One hears a variety of reasons for accepting or rejecting a living kidney donor. One may hear that a donor should be accepted because “risk is low”, or that he should be rejected because “there is a risk”, or “he will live to regret it”, or “I have a bad feeling about this one”. These particular reasons may seem valid, but they are not by themselves the essential factors that should make us decide that it is ethical or unethical to proceed with the transplant in question. Some donors should be rejected even though their risk is low. Donors always take risk. An appropriately accepted donor may live to regret donation. One may have a bad feeling about something that is still the ethically correct thing to do. In explicitly formulating its ethical position, the center must first recognize that it has inherent conflicts of interest in the process of kidney donor selection. Conflicts of interest are common in medical practice and in life, and to have them is not unethical. Indeed the center’s desire to perform as many transplants as possible is in many ways laudable. It can be unethical however to conceal a conflict of interest or to organize a transplant program so that one is avoidably influenced by it. A center can also be so concerned about its conflicts of interest CHAPTER ONE 3 that it overreacts and denies acceptance to appropriate donors to avoid any pos- sibility of criticism. As will be discussed below, full disclosure, a healthy conditional respect for the donor’s right to decide for himself and an impartial and thorough education are the basic features of the center’s only ethically justified position. The following paragraphs explain these features. All involved in living kidney donor transplantation must acknowledge that donation always involves the risk and discomfort of the operative procedure itself and the long term risk of having only one kidney. The risk may be acceptable for many centers and many individuals, but it is never nil. Risk also is often different for different classes of acceptable donors. Young donors will live longer, and will have more time to develop renal disease in later life. Black donors are at risk relative to Caucasians [1, 2]. Blood relatives of patients with many renal diseases, even though they have a benign donor evaluation, can be at increased risk [3]. Therefore, centers should not focus on whether there is “a risk”, but to try to quantify the risk, convey it to the donor, and let the donor decide [4]. There will, of course, still be cases in which the center decides it would be unethical to proceed, and these are also discussed below. Respect for the right of the patient to decide requires centers to recognize that altruism is ethically acceptable as a reason to donate – it needs no reward. Professed altruism need not suggest that a donor is irrational or uninformed. It is perfectly reasonable for an individual to want to donate a kidney simply to help another. It also wrongly makes altruism sound self interested if one speaks of “a mental benefit” or a “feeling of importance” for the donor coming from donation [4]. The center cannot guarantee these mental benefits to donors and need not ascer- tain whether they will occur after donation. It is reasonable for someone to act to help someone else as the sole justification for that action. Some people often act this way; others seldom do. Both choices are reasonable and must be recog- nized as such. However, altruism is not the only motive which should be acceptable to centers. Donors may donate because avoiding dialysis for the recipient improves the donor’s individual situation. Spousal donation may have such a self interested rationale [5], as may the donation of a kidney from a parent to a child who must otherwise undergo in-center dialysis. Of course, some donors can have both altruistic and self interested reasons, but self interested reasons are not in themselves unaccept- able. Individuals who want to donate a kidney for money or for some other reward are discussed in subsequent sections. These donors differ importantly from conventional donors, either altruistic or self interested, in that they need not care at all whether the donated kidney functions. Their reward is different and usually is financial. It is often proper to sanction individuals who have a clear-cut duty that they do not fulfil. Dutiful donors are those who feel that they deserve such ethical sanction if they do not make every attempt to donate. Most of us recognize however that no one has a duty to donate a kidney, i.e., – no one deserves criticism or punishment if they do not come forward. Dutiful donors may still suffer if they do not donate, because they themselves feel guilty if they do not do so. A per- sistent, dutiful donor who receives the usual complete and impartial evaluation and counseling can ethically be accepted by centers. However, the center should not tacitly encourage the donor’s sense of duty, but rather should point out that there 4 ROBERT W. STEINER ET AL. is not an accepted duty for anyone to donate a kidney. Donors who donate for religious reasons are also often dutiful donors. There is no consensus that acts such as kidney donation are required by any religion, but it may be easy to wrongly manipulate some potential donors with religious arguments. Nevertheless, the center may encounter individuals secure in their religion who wish to donate as a religious duty, to receive a divine reward, or to please God. As long as the center is neutral about such religious reasons, is careful that it does not overtly or tacitly encourage this rationale, and does not abridge its usual donor selection procedure, donors with religious motivation would also seem acceptable. The only four appropriate general reasons for rejecting a donor on ethical grounds are (1) that the donor is not informed, (2) that donation would not clearly be rational for that donor, i.e., the benefit is too small in relation to risk for that person and sometimes for any reasonable person, (3) that consent is not free and voluntary, and (4) that donor acceptance would significantly risk harm to future donors or recipients. Any of these four reasons justifies donor non-acceptance by itself. Many individuals already instinctively use these reasons to justify ethical decisions, although they may or may not be able to articulate and explain them systematically. Therefore in offering these formulations, we do not necessarily suggest that anyone involved in donor selection should change his or her donor selection practices. This certainly may happen in some difficult cases with dis- cussion and reflection, as it may with any complicated intellectual process. However, we suggest that ultimately all the good reasons for rejecting a donor ultimately come down to the four we have formulated. The following paragraphs consider each of these reasons in more detail. The first good reason to reject donors is because they are not informed. Donors must be informed to be acceptable. This does not mean that donors need simply to be exposed to material regarding renal transplantation. Donor understanding is important because the donor formulates his idea of risk and benefit on the basis of it. A donor must know what he is likely to achieve, what he is risking, and the alternatives available to the recipient. These alternatives, of course, include dialysis, cadaver kidney transplantation, and transplantation from other living donors [6]. These issues are discussed elsewhere in this book. The center needs a reasonable measure of whether the donor has understood these important issues. This can be obtained with specific donor testing [7] and is discussed in Chapter Seven. Donors who cannot be adequately be informed should not be accepted. The belief that a donor could not be informed may be the underlying and sometimes vaguely formulated reason that some centers do not accept unsophisticated donors who either have complicated medical findings on their evaluation or have a recipient with unusual risk factors. However, the center is usually not justified in simply assuming that unsophisticated donors cannot be taught and tested as to their level of understanding. Rejecting a donor because he or she is not informed can only justifiably take place when reasonable efforts have been made to educate and test that donor. The center and the rejected donor should be clear that donor rejection took place because of doubts about the donor’s understanding of risk, not because donation was high risk. Conversely, even a donor with an extremely benign medical evaluation must be declined if he is not successfully educated in a standard fashion. What would not appear to be fundamentally important when deciding on donor