|Year : 1996 | Volume
| Issue : 2 | Page : 115-120
|Living Organ Donation: Time for a Donor Charter
Department of Surgery, Sultan Qaboos University, Oman
Click here for correspondence address and email
|How to cite this article:|
Daar A S. Living Organ Donation: Time for a Donor Charter. Saudi J Kidney Dis Transpl 1996;7:115-20
Cadaver donation is the mainstay of United States and European renal transplantation, although there is a huge and well-documented shortage of organs ,, . The gap between supply and demand is increasing inexorably and it is very likely that the supply from this source will never meet the need or the demand  . This presentation documents a creeping sense of desperation; argues that the continued predominance of cadaver donor transplantation does not satisfy adequately the aims of medical therapy  ; argues that these aims are best served by living donor transplantation, but that this is beset by long-held negative attitudes ,,,, ; and demonstrates that there is now a palpable sense that living donation should reclaim its historical legacy ,,, . The presentation ends with a 10-point charter aimed at increasing living donation.
The creeping sense of desperation
The figures are frightening: by the year 2000, the United States waiting list for kidneys will have more than doubled to over 37,000 from 17,938 in 1990  . The number of cadaver donors in 1990 was 4,152, a rate of about 17 per million population (pmp), and this has remained largely constant while the average incidence of end-stage renal disease (ESRD) has risen to about 200 pmp/year. The situation in Europe is similar. In the Eurotransplant area, cadaver donation rates have dropped by 14% in the past year, and in France by 17%  . In Germany, family refusal for donation is increasing  and the clergy is beginning to question the concept of brain-death  .
The United States system is nearly "maxedout"  . The dreaded "R" word (rationing) is beginning to be talked about , . The new performance criteria for OPOs seem Intended to consolidate them into more efficient units  . This, of course, may not increase efficiency. Jonasson believes that here, "bigger is not better"  and that it is time to put the horse (transplant team) before the organ retrieval cart  . The public trust that is needed for both the provision of organs and the money to pay for them is eroding  . In France, the situation is so bad that the government has taken away from physicians the privilege of organizing transplantation and has created a new body headed by a 67-year old embryologist  . Observers are beginning to wonder how long it will be before the Medicare ESRD entitlement is challenged in these times of scarce money, competing demands, and huge numbers of uninsured Americans  .
Another manifestation of desperation is the advocacy of ideas like elective ventilation  , use of non-heart beating donors  , presumed consent  , etc., which are considered by some to be ethically questionable , . One of the pillars of medical ethics, namely autonomy, is itself now being questioned with views that "autonomy is not the all-purpose answer to every question, certainly not about what ought to happen to the bodies of newly-dead individuals and the role of their families"  .
Are we Dealing with a Mirage?
Today, we know that all advances have improved only short-term cadaver graft survival and that over the past 25 years the rate of graft loss after the first year has remained constant , . The average transplanted cadaver kidney is lost in six years  . Only 5% of patients receive a perfectly matched kidney and the next best match does not yield a sufficiently high success rate to justify national sharing , . Even if, under ideal circumstances, maximal matching became possible, the 5-year graft survival would increase by a minuscule 4.4%, and the actual benefit is likely to be even smaller  .
Compared to the results of living donor kidney transplants, both related and unrelated, the conclusion seems unavoidable that, in the long run, cadaver transplantation is simply an excellent second best.
The Paradigmatic Stranglehold.
Despite the fact that modern transplantation started with living donors ,,,, , the lure of cadaver donation and its perceived improvement in outcome have pushed living donation to the sideline. Nobel prize winners interested in transplantation have actually advocated to the President of the United States that "organ grafting should not, under any circumstances, be practiced using organs from non-related donors"  . WHO guidelines, only recently adopted, share this view and sentiment  . European Ministers of Health, probably also under the same influence, have gone so far as to say that "donation from living persons should be reduced and if possible, completely stopped"  . A number of other influential persons, on both sides of the Atlantic, also hold this view ,,
Evidence of an Attitude Change in the Transplant Community
At the 1994 congress of the Transplantation Society in Kyoto the delegates' vote in favor of living donation was overwhelming. The mere choice of the subject of controversy in a book published recently confirms that it is time to re-look at living donation. The EUROTOLD initiative in Europe is a 3-year research project aimed at understanding the cultural, social and ethical aspects of living donation and solving the puzzle of the huge variation in living donor rates between units, regions, and countries in Europe  . The British Transplantation Society Working Party on Organ Donation is questioning why only a minority of transplant unit directors approach families for living related donations when 24 out of 27 transplant directors claim to support increasing such donations  .
Arguments in Favor of Living Donation: the Unsung Issues.
We know that survival curves , , half-life figures  , and many other factors  support living donations. In this section, I will briefly comment upon those arguments that are not generally appreciated as also supportive of living donor transplants, when compared with cadaver donor transplants:
a) Transplanters are generally utilitarians, rather than deontologists. Our ethics are outcome-driven. Show us that the results are justified and no harm is done, and we will support it. The recent demonstration that graft survival rates in living nonrelated recipients are equivalent to those of one haplo-mismatched living related transplants ,,, and are superior to rates in recipients of cadaveric grafts, comes as a surprise  , but it should also be a strong argument to encourage such donations when clinically appropriate and truly voluntary  . For reasons yet to be determined, the outcome is better than for cadaver transplants.
b) Currently, approximately 20% of kidney transplants in the United States are from living donors  . If this increased to the level, say of Norway (about 40%)  , the accrued overall increase in half-life would probably be significantly higher than currently appears possible by almost all the efforts aimed at the improvement of procurement procedures  , matching , , or allocation criteria , for cadaver transplantation. It would be relatively simple to construct models to test this hypothesis.
c) The enormous variation in the rates of living donor transplants between units, regions, and countries cannot be explained by projected results or local laws  . The most likely explanation is the attitude of the unit, and specifically that of the director of the program. This makes it tractable, because all it would take to increasing living donation significantly is to change those attitudes.
d) It is claimed that altruism remains the central and the only acceptable motive for organ donation  . Altruism, though, is a very complex issue that is also overstated in transplantation , . Cadaver donation as currently practiced does not reflect the donor's altruism at all  . It is essentially based on familial consent  . It is possible to make a convincing argument that shared interest and purpose form a more solid basis for cadaver donation systems than does altruism  . Living donation, on the other hand, certainly is based on altruism  .
e) The main argument against living donation is that the donor may be harmed ("primum nihil nocere," even if Hippocrates did not actually say so). We do know, though, that the short- and long-term risks are small , . If we truly care, then we should pay attention also to the wishes of the donor. Joseph Murray, in discussing the historic 1954 transplant between identical twins says, "We felt it reasonable to offer the donor the operation"  . Most living donors in Europe and North America, related or not, have actually wanted to donate  ; it is perhaps the most meaningful and altruistic gesture of solidarity that a human being could choose to perform. Why then do we insist on altruism and then stand in the way of its expression  ? Paternalism here is uncalled for and is detrimental. We must also remember that the Hippocratic tradition hardly applies to today's cadaver donation/ allocation system. It has been replaced by "societal ethics"  . If we wish to reclaim Hippocrates, we will have to do more living donor transplants.
f) There have been about 20 deaths out of the 60,000 or so living kidney donations so far  . It is not uncaring to point out that in all likelihood more lives may have been saved from the process of screening those 60,000. In one center alone, between 1985 and 1992, 89 out of 1,054 potential donors were found to have previously undiagnosed abnormalities  , including abnormal glucose tolerance tests (n = 26), abnormal renal function (n = 17), hypertension (n=15), and cardiovascular diseases (n = 8). There were six who had malignancies, and because of early detection, all were able to have resections.
g) The cost advantages of living, compared with cadaver donor transplants are enormous. They are both short- and long-term, and they are certainly underappreciated. To appreciate them fully would require the accounting of all the following:
i) procurement and shipping charges,
ii) complexity of laboratory tests,
iii) cost implications of delayed early graft function (hospital stay length, more expensive medication, e.g., biological and antiviral reagents, dialysis, repeated biopsies, distinguishing rejection from cyclosporine toxicity, etc.) and primary graft failure (technical or otherwise),
iv) the cost implications of treating the consequences of the poor short- and long-term results of the average matched cadaver transplant (episodes of acute and chronic rejection and their management, graft loss, graft nephrectomy, return to dialysis, re-transplants and their even poorer outcome
v) the consequences of higher maintenance immunosuppression (infection, hospital admission, malignancy, steroid complications, etc.),
vi) the cost of staying on the waiting list (in terms of dialysis, deterioration of health, management of complications, aging, acceptance of marginal donors in desperation, etc.).
h) The allocation system of cadaver organs is still controversial. In the United States, it is unfair to minorities because of over-emphasis on HLA matching  . Schemes have been proposed to increased local matches using 10 key amino acids of HLA-A and -B and a limited number of DR types  . Blacks, however, even if they obtained more cadaver donors, still have a much poorer outcome than whites  . If optimal transplant success was a primary determinant, no cadaver kidney would be transplanted to Blacks  . In fact, the only situation in which the graft survival in Blacks is equal to that of Whites is in HLA-identical siblings  only obtainable in living related transplants. Cold ischemia times also seem to translate into poorer long-term results  .
i) The effect of non-compliance is probably under-rated. It is, in some reports, the third leading cause of graft failure after rejection and infections , . It is, for example, the cause of allograft failure in about 78% in the second year after transplantation at one center in Chicago  . Predisposing factors include increased numbers of medications used, depression, unemployment, and several other factors common in cadaver donor transplants. Patients receiving living related grafts, on the other hand, have a much reduced risk of noncompliance and of loss of grafts from noncompliance  . Could this be one of the factors contributing to the better than expected results of living related transplants?
j) The AMA Council of Ethical and Judicial Affairs defines  the three primary goals of medical treatment as to maximize.
a) the number of lives saved,
b) the numbers of years of lives saved, and
c) improvement in the quality of life.
If we wish to maximize the quality and quantity of life, then there are fair, socially acceptable and humane criteria for allocating cadaver organs or other scarce resources, but these appear difficult to achieve and particularly to reconcile with other values and with current realities. Living organ donation, however, truly achieves these lofty ideals while respecting the autonomy of donors and maximizing altruism, and most importantly, allows physicians to fulfill their fundamental duty to "do all (they) can for the benefit of the individual patient" in the long-run  .
| A Charter to Encourage Living Donation|| |
This dialysis/transplant center will:
1. Familiarize itself with the numerous advantages of living donation.
2. Acknowledge that living donation is ethical, and that compared with cadaver donation, it is more altruistic, less expensive, and gives better long-term results.
3. Accept that living non-related transplants give results comparable to one haplomismatched living related transplants; however, non-related donation will not be allowed at this center if it is based on commercial dealings. We accept, though, that in the vast majority of recorded instances in this country, such transplants are based upon enduring bonds and emotional relationships ("emotionally related"), and as such, they are probably even more voluntary and altruistic than in living related transplants  , and are perfectly acceptable ethically. In the case of spouses, his center realizes that transplantation and removal from the waiting list have benefits for both partners which include more bonding, more time together (without dietary restrictions), the ability to vacation easily away from home, better family income, better self esteem, more likelihood of bearing children, if wanted, and the opportunity to express love and a sense of responsibility  .
It is perfectly understandable why a wife might choose to donate to a husband rather than to a brother. Continue to believe in altruism, and in order to increase its overall level, the staff of this center will be the first to set an example by foregoing its professional fees when possible.
4. Ensure that none of the patients under its care will even fall into the "dialysis trap"  . Wherever possible and appropriate, it will ensure that patients are transplanted just before they need dialysis.
6. Appreciate that staff attitudes, words, mannerisms, and body language are important in influencing the decisions of patients and their relatives. The staff of this center will, therefore, not use these to discourage living donation. The director understands that he/she is not an expert at fathoming the deeper levels of human motivation but that he/she is likely to be persuaded by those who think they are.
7. Provide, verbally and in writing, all the evidence in favor of living related transplantation to all its patients and their relatives, and especially to spouses.
8. Do its best to care for the living donor before, during, and after surgery; will investigate potential donors carefully so as to identify undiagnosed abnormalities; will continuously strive to make the living donor appreciate the unique gift he/she is giving so as to maximize his/her chances of obtaining the well-documented psychological benefits of donation and thereby to ensure that the donor joins the community of the more than 90% of former donors who never regret their magnificent act.
9. Attempt to change the guidelines of its professional societies so that living donation is specifically encouraged.
10. Appreciate that, although in many ways cadaver donation is an excellent second best, we in this unit are not against cadaver donation and will always strive ethically to increase cadaver donation rates.
| References|| |
|1.||Evan RW, Orians CE, Ascher NL. The potential supply of organ donors. An assessment of the efficacy of organ procurement efforts in the United States. JAMA 1992;267:239-46. |
|2.||Eurotransplant. Donation in 93/94: first 6 months. Eurotransplant Newsletter 1994;119;62. |
|3.||Niemcryk SJ, Aronoff R, Macroni KM, Bower GS. Projections in solid organ transplantation and wait list activity through the year 2000. J Transplant Coord 1994;4:23-30. |
|4.||Ethical considerations in the allocation of organs and other scarce medical resources among patients. Council on Ethical and Judicial Affairs, American Medical Association. Arch Intern Med 1995;155:29-40. |
|5.||Medawar, et al. Letter to President Regan, quoted by Editor, Lancet 1984; 17:1510. |
|6.||Kreis HH, Why living related donors should not be used whenever possibler. Transplant Proc 1985;17:1510-14. |
|7.||Broyer M. Aspects of living organ donation with emphasis on the fight against commercialization, in Land W, Dossetor JB, (eds): Organs Replacement Therapy: Ethics, Justice, Commerce, Berlin, Springer-Verlag 1991; 197. |
|8.||Starzl TE. Living donors: con. Transplant Proc 1987;19:174-5. |
|9.||Michielsen P. Medical risk and benefit in renal donors: the use of living donation reconsidered, in Land W, Dossetor JB, (eds): Organ Replacement Therapy: Ethics, Justice, Commerce, Berlin, Springer-Verlag 1991;32. |
|10.||Murray JE. Human organ transplantation: background and spin-offs. Nobel Lecture, tockholm, 1990. |
|11.||Daar AS. Nonrelated donors and commercialism a historical perspective. Transplant Proc 1992;24(5):2087-90. |
|12.||Daar AS, Sells RA. Living non-related donor renal transplantation a reappraisal. transplant Rev 1990;4:138. |
|13.||Tilney NL, Hollenberg NK. Use of living donors in renal transplantation. Transplant Rev Orlando 1987;1:225-3S. |
|14.||Suthanthiran M, Strom TB. Renal transplantation. N Engl J Med 1994;331:365-76. |
|15.||Schutt G, Schroeder P. Population attitudes toward organ donation in Germany. Transplant Proc 1993;25:3127-8. |
|16.||Land W. Personal Communication, 1995. |
|17.||Ferguson R. Transplant News (quote) 1994;4 (19):2. |
|18.||Wynn B. Transplant News (quote) 1994;4(19):3. |
|19.||Callahan D. Rationing medical progress. The way to affordable health care. N Engl J Med 1990;322:1810-3. |
|20.||Federal Register, September 8, 1994. |
|21.||Jonasson O. To Life (quote) 1994;5:10. |
|22.||Caplan A. To Life (quote) 1994;5:10. |
|23.||Eurotransplant Newsletter 1994;122:6, |
|24.||Retting RA. Socioeconomic impact of end-stage renal disease program in the USA. Payment and quality of care. Nefrologia 1994;14(suppl 1): 14. |
|25.||Feest TG, Riad HM, Collins CH, Golby MG, Nicholls AJ, Hamad SN. Protocol for increasing organ donation after cerebrovascular deaths in a district general hospital. Lancet 1990;335:l 133-5. |
|26.||Kootstra G, Wynen R, Van Hoof JP. The non-heart-beating kidney donor: of any help in developing countries? Transplant Proc 1992;24:2040-41. |
|27.||Land W, Cohan B. Postmortem and living organ donation in Europe: transplant laws and activities. Transplant Proc 1992;24(5):2165-67. |
|28.||Gunning K. Elective ventilation. Transplant Soc Bull 1994;2:21. |
|29.||Caplan AL. Requests, gifts, and obligations: the ethics of organ procurement. Transplant Proc 1986;18:49-56. |
|30.||Murray T, Younger S. AMA calls for US to adopt policy of "mandated choice" requiring individuals to declare intentions to be organ/tissue donors. Transplant News (quote) 1994;4(17):3. |
|31.||Cecka JM. Outcome statistics of renal transplants with an emphasis on long-term survival. Clin transplant 1994;8:324-7. |
|32.||Moris PJ. Results of renal transplantation, in Morris PJ. (ed): Kidney Transplants: Principals and Practice. th Ed. Saunders, Philadelphia 1994;504. |
|33.||Terasaki PI, Cecka JM, Gjerston DW, et al. in Terasaki PI, Cecka JM, (eds): Clinical Transplants 1992. Los Angles UCLA Tissue Typing Laboratory 1993;501. |
|34.||Jalaz NA. Toward a more equitable and utilitarian distribution of kidneys. Clin transplant 1994;7:357. |
|35.||Starzl TE. HLA matching and the point system. Clin Transplant 1994;7:353. |
|36.||Held PJ, Kahan BD, Hunsicker LG, et al. The impact of HLA mismatches on the survival of first cadaveric kidney transplants. N Engl J Med 1994;331:765-70. |
|37.||Levey AS, Hou S, Bush HL Jr. Kidney transplantation from unrelated living donors. Time to reclaim a discarded opportunity. N Engl J Med 1986;314:914-6. |
|38.||W.H.O. Guiding Principles, #3. Human organ transplantation: report on development under auspices of W.H.O. 1987-1991. |
|39.||Conference of European Health Ministers, Paris November 1987. |
|40.||Anonymous. The ethics of living donor transplantation. To Life 1994;5:18. |
|41.||Buist L. B.T.S. Newsletter 1994;4:13. |
|42.||Cosimi AB. The donor and donor nephrectomy, in Morris PJ, ed. Kidney Transplants: Principals and Practice. 4th Ed. Saunders, Philadelphia 1994;56. |
|43.||Pirsch JD. The effect of donor age, recipient aged and HLA matching of immunologic graft survival in cadaver renal transplant recipients, in Terasaki PI, ed: Clinical Transplants 1990. Los Angles, UCLA Tissue Typing Laboratory 1991;241. |
|44.||Cecka JM, Terasaki PI. The UNOS Scientific Renal Transplant Registry, in Terasaki PI, Cecka JM. (eds): Clinical Transplants 1992, Los Angles, UCLA Tissue typing laboratory 1993;1. |
|45.||Kaufman DB, Matas AJ, Arrazola L, Gillingham KJ. Transplantation of kidneys from zero haplotypematched living donors and from distantly related and unrelated donors in the cyclosporine era. Transplant Proc 1993;25:1530-1. |
|46.||Takemoto S, Terasaki PI, Gjertson DW, Cecka JM. Equitable allocation of HLA compatible kidneys for local pools and minorities. N Engl J Med 1994;331:760-4. |
|47.||Childress JF. The body as property: some philosophical reflections. Transplant Proc 1992;24:2143-8. |
|48.||Daar AS. Cross cultural perspectives in organ transplantation: view from the borderline, in Levine R, (ed): Organ Transplantation: Cross cultural Perspectives. Yale (in press). |
|49.||Kleinman I, Lowy FH. Cadaveric organ donation: Ethical considerations for a new approach. Can Med Assoc J 1989;141:107-10. |
|50.||Daar AS, Salahudeen AK, Pingle A, Wood HF. Ethics and commerce in live donor renal transplantation: Classification of the issues. Transplant Proc 1990;22:922-24. |
|51.||Weiland, et al. Information on 628 living related kidney donors at a single institution, with longterm follow up in 472 cases. Transplant Proc 1984;16:5. |
|52.||Robitaille P, Mongeau JG, Lortie L, Sinnassamy P. Long-term follow-up of patients who underwent unilateral nephrectomy in childhood. Lancet 1985;l:1297-99. |
|53.||Evans M. Organ donations should not be restricted to relatives. J Med Ethics 1989;15:17-20. |
|54.||Veatch RM. Theories of medical ethics: the professional model compared with the societal mode, in Land W, Dossetor JB (eds). Organ Replacement Therapy: Ethics, Justice, Commerce. Berlin, Springer-verlag 1991:3. |
|55.||Anonymous. Organ procurement a dying art? To life 1994;5:10. |
|56.||Jones JW, Halldorson J, Elick B, Granger DK, Matas AJ. Unrecognized health problems diagnosed during living donor evaluation: a potential benefit. Transplant Proc 1993;25:3083-4. |
|57.||Gaston RS, Ayres I, Dooley LG, Diethelm AG. Racial equity in renal transplantation. The disparate impact of HLA-based allocation. JAMA 1993;270:1352-6. |
|58.||Kiley DJ, Lam CS, Pollak R. A study of treatment compliance following kidney transplantation. Transplantation 1993;55:51-6. |
|59.||Didlake RH, Dreyfus K, Kerman RH, Van Buren CT, Kahan BD. Patient noncompliance: a major cause of late graft failure in cyclosporinetreated renal transplants. Transplant Proc 1988;20:63-9. |
|60.||Land W. The problem of living organ donation: facts, thoughts and reflections. Transpl Int 1989;2:168-79. |
|61.||Thiel G. European College Transplant Course, Basle, 1993. |
|62.||Dossetor JB. A central paradox in medicine: the ethical tension between self interest and altruism, in Land W, Dossetor JB (eds): Organ replacement therapy: ethics, justice, commerce. Berlin, Springer -Verlag 1991;337. |
A S Daar
Department of Surgery, Sultan Qaboos University, P.O. Box 35, Al-Khod
| Article Access Statistics|
| Viewed||4850 |
| Printed||91 |
| Emailed||0 |
| PDF Downloaded||273 |
| Comments ||[Add] |