A Colloquium on the Congress “A Gift for Life. Considerations on Organ Donation”

Abstract

MAIMONIDES J. M. Simón i Castellvì Once upon a time, a man insulted a physician called Maimonides, and his Jewish religion, within the hearing of the king. The king ordered him to take out the heart of that bad man, but the doctor looked after that poor bad man, gave him food, cured him and even paid for his medicines. His heart though changed. After some time, once again the king and the doctor met that man. Isn’t this he who insulted you and your religion? Yes, My Lord. Why didn’t you obey my order? I did obey you, My Lord! I have changed his wooden heart and I have given a human and peaceful heart! So, it is possible to operate without a knife, the king said! Rabbi Moshe Ben Maimon, also known as the RAMBAM, was born in the Spanish city of Córdoba in 1135. He was a rabbi, a physician and a philosopher. The medieval Arabic poet Al Said Ibu Sural al Mulk wrote about him: “Galen’s art healed only the body, but Abu Imram’s (Maimonides) the body and the soul”. Maimonides said that it is impossible for the truths arrived at by human intellect to contradict those revealed by God. Saint Thomas Aquinas held him in high esteem. A beautiful daily prayer of a physician is attributed to him. … Thou hast created the human body with infinite wisdom. Ten thousand times ten thousand organs hast Thou combined in it that act unceasingly and harmoniously to preserve in the envelope of the immortal soul. They are ever acting in perfect order, agreement and accord. Yet, when the frailty of matter of the unbridling of passions deranges this order or interrupts this accord, then forces clash and the body crumbles into the primal dust from which it came. … Almighty God! Thou hast chosen me in Thy mercy to watch over the life and death of Thy creatures. I now apply myself to my profession. Support me in this great task, so that it may benefit mankind! … Today, we can discover our errors of yesterday and tomorrow we can obtain a new light on what we think ourselves sure of today. BIOETHICAL CONSIDERATIONS Antonio G. Spagnolo and Nunziata Comoretto In the past half-century, solid organ transplantation has become standard treatment for a variety of diseases, potentially restoring patients with terminal illness to normal life (1). The technique of successful transplant operations has given rise, for both individual and society, to several ethical questions. Some of them are common to those arising from the ethical implications of all developing techniques, such as the weighing of risks involved in early experimentation, the likelihood and degree of success in particular cases, the need for informed and free consent on the part of those involved and the justification of investment in terms of resources and personnel. However, there are some ethical questions peculiar to the concept of transplantation, that is, those related to the transference of organs from one individual to another (2). One of the first moral quandaries in transplantation, in fact, concerns whether it is right to remove a healthy organ from a healthy person (in violation of the Hippocratic aphorism “do not harm”), even if the aim is to save the life of another person. Another is whether or not individuals have the moral authority to mutilate their bodies (3). Currently, the major ethical problems in organ transplantation come out of the shortage of organs, as presently thousands of people are on waiting lists for transplants and their lives are dependent on the recruitment of organs (4). Moreover, the number of people needing transplants is expected to grow in the next decades, especially due to the aging of the baby boomer population and the increase of kidney disease due to hypertension and diabetes (5). The organ shortage has motivated a host of efforts to increase organ supply, some of which are controversial, such as the acceptance of expanded criteria for increasing cadaveric donors pool (for instance, older and sicker donors), donation after cardiac death (so-called nonheart-beating donation) and the increasing number of living organ donors (outside of the living related donation) (6). The purpose of this essay is to explore some of the ethical issues involved in transplantation and particularly those connected to recent proposals, which seek to address the scarcity of organs, but at the same time might threaten the applicability of the notion of donation in the context of organ transplantation (2). Bioethics and Self-giving in Organ Donation The situation of organ donation, both by living and dead donors, is an expression of self-giving to another person, the recipient, characterizing every voluntary transplantation primarily as an interpersonal action (2). To be more precise, the present voluntary procedure of organ donation is based on a call to altruism. The act of organ donation could be seen as giving a gift; the reason is that the giver wants to benefit the recipient, acting freely and nothing being expected in return for the donation (7). The practice of organ donation shares also many elements with the ordinary understanding of charity (that is helping or giving to those in need of something); organ donation indeed has been described as a gift for life. According to the Charter for Health Care Workers (point 85), transplants “are legitimized by the principle of solidarity, which joins human beings, and by charity, which prompts one to give to suffering brothers and sisters. We are challenged to love our neighbor in new ways; in evangelical terms, to love even unto the end (Jn 13:1)” (8). In the perspective of self-giving, the donation of an organ (an inessential organ for the living donor) to someone who is needy is widely recognized as legitimate and laudable (2), a “service to life”, a “particularly praiseworthy example” of the gesture of human sharing, “which build up an authentic culture of life” (9). Moreover, in this perspective, the donation after death cannot also be regarded as a moral duty, but exclusively depending on the generosity of donors who are undertaken with the reason of a genuine willingness to help someone who has a particular need and might not be known by the person performing the charitable act. This situation does not exclude that some people perceive organ donation as a moral “duty”, in the same meaning that many people perceive that they have a moral duty to perform acts of charity (7). On the contrary, stressing the current “shortage” of organs for transplantation could give rise to the impression that individuals who are unwilling to make organs available in some vague way are morally responsible for what is perceived as a “social problem”. The central question in transplantation, indeed, is whether or not a human being can be helpful to another one. Therefore, it would be regrettable if society, to solve distressing statistics, would decide to destroy the interpersonal character of transplantation and the aspect of human and voluntary service of another, which is intrinsic to it (2). On this ground, the refusal of organ donation should be necessarily respected. In the same way, it is believed that the family’s wishes about organ removal from the dead relative should be respected—without overriding the wishes of the dead person—as the relatives generally may be the best interpreters of the deceased’s wishes. Based on the concept of self-giving, all organ donations may be permitted only when they represent an altruistic act, meaning that nonfinancial incentives are associated to living or after death organ donation (10). Bioethical Principles in Organ Transplantation The ethics of transplantation are based on the tension between bodily integrity and human solidarity. On one side, bodily integrity should be protected because of its uniqueness, a means by which we live. On the other side, we are also social beings, interdependent for life in human society (10). Several widely accepted bioethical principles are relevant to practices in transplantation. They include nonmaleficence (avoiding harm), beneficence (producing benefit), autonomy (respecting personal choices) and justice (distributing benefits and burdens equitably) (11). These principles require the satisfactions of basic conditions for an organ donation to be ethical. The Beneficence/Nonmaleficence Principle This principle of medical ethics requires a benefit/burden ratio in the perspective of both the donor and the recipient. Serving as an organ donor is not in the donor’s best medical interest as there is not a therapeutic benefit for him or her. On the contrary, there are some significant medical risks for the living donor, such as the risks of surgery and anesthesia, postoperative bleeding and infections, and pain. Sometimes an additional risk is the temporary, or even permanent, restrictions in social activities because of the donation (5). However, it is well accepted that there are psychologic and emotional benefits (an increased self-esteem) that donors may experience both as living donors and in donation that will be effective after death. Potential psychologic and emotional benefit cannot be extended to those persons with cognitive disabilities: usually this is prohibited by the law and regarded as unethical, because the individual does not understand implications of the operation. Another given reason of benefits to the donor in the case of relative living donor is the fact that the donor will receive more intrafamilial companionship after transplantation has been executed (5). However, there are also data on psychologic risks of serving as a living donor, such as lower self-esteem, a sense of neglect and a lack of expected appreciation after the donation as the attention refocuses on the recipient. Although the vast majority of donors do not regret their decision, cases of donor suicides have been reported. The real direct benefit to the donor is the “moral” benefit; psychologic and emotional benefits may be indirect, as a further positive consequence of a primarily moral benefit. The moral benefit of donation consists of the awareness of a moral good action, regardless of the transplant results or gratitude manifested by the recipient or by the relatives. In the case of a dead donor, such kind of moral benefit of a good action is the only benefit the potential dead donor may experience with regard to donation. The major factor to be considered in nonmaleficence of organ transplantation after death regards the criteria to pronounce the donor death. A debated ethical dilemma is whether it is justifiable to incur the risk of shortening the life of a person in the attempt to improve the life of another one. According to the “dead donor rule”, the subject must be recognized dead before removal of organs (2). The Charter for Health Care Workers states (point 74): “There must be certainty, however, that it is a corpse, to ensure that the removal of organs does not cause or even hasten death” (8). This means that “the removal of organs requires that steps to ensure that the subject is actually dead must be duly verified” (9). Until comparatively recent times, it was generally accepted that the cessation of spontaneous breathing and spontaneous heart beat, during a well-defined period of time, indicated the end of an individual. Progress in medicine has made it possible to reverse this cessation and also determine the cessation of all cerebral functions as a significant factor in identifying the onset of death. According to the concept of brain death, a person is dead when it has been established that he or she has suffered an irreversible cessation of all brain functions and is incapable of spontaneous respiration (12). At the point when the whole brain death occurs the individual ceases to live, as since that moment there is no integrated functioning of the body as a whole (13). Initially, intensive care units faced the necessity to diagnose brain death to determine when to stop mechanical ventilation, as ventilation of a corpse has no real reason (14). The newly accepted criteria of brain death also consents to the timely removal of transplant organs. As we know, the transplanting time is a crucial factor. Damage from ischemia can irreversibly decrease the quality of organs and it would be unethical to transplant such organs. Living organ donation is most distinguishable from cadaveric donation in that it involves a healthy living person who consents to have a kidney, liver lobe or lung lobe removal. Notwithstanding his or her consent, the removal of an organ from an otherwise healthy patient, for no therapeutic benefit to the patient, constitutes a prima facie harm. It is still unclear whether removal of organs from living donors results in a decrease in life expectancy and in the increase of required medical care. However, it is certain that procurement of organs from living donors results in unneeded surgery, debility and risk of death. Indeed, after the success of cadavers as organ donors, the concern that using the living as donors is unethical has risen. Therefore, living-related donation is the only type of living donation that has traditionally been accepted by the transplant community and society. This is because the familial relationship allows us to make sense of what is otherwise an unusual choice; having a healthy organ removed. Living- related donation is allowed on the grounds that it can also be beneficial for the donor because of an existing, close relationship with the recipient. Over time, the paradigm of related donation has been extended, on the same grounds, to living- unrelated donation within a relational context, such as close friendship (6). The main benefit to the recipient is a healthy living graft. Risks to the recipient include medical risks of the transplantation procedure and adverse effects of immunosuppression, which include increased risk of infection and malignancies. The requirement for chronic antirejection therapy, the presence of chronic or relapsing viral infections and environmental exposures to many opportunistic pathogens have created a state of increased vulnerability in transplanted patients (15). In the case of living donation, the recipient could experience psychologic and emotional feeling of being indebted; in addition, there is the potential risk of guilt if the donor experiences a significant morbidity or dies (5). With regards to the safety of transplantation for the recipient, we are challenged today with the problem of so-called marginal donors. Elderly donors, pediatric donors, diabetic donors, donors with hepatitis B or hepatitis C virus, hypertension and elevated creatinine, donors with long cold ischemia time and nonheart-beating donors are usually considered as marginal donors, that is, their organs are not considered optimal due to age or concomitant diseases (16). However, the chronic shortage of donors has resulted in attempts to use these donors, particularly for critically ill organ recipients, who would not survive without an immediate transplant. At present, there is a lack of uniform criteria concerning which organs ought to be discarded. The results of several studies (17, 18) demonstrate a survival disadvantage among transplant recipients who received a marginal organ, providing support for the position that transplanting organs from marginal donors should be avoided. The Autonomy Principle According to the ethical principle of autonomy, living donors have the right to get all the relevant information concerning the outcome, for both the recipient and himself. In the same way, all citizens should receive all the information about procedures involved in transplantation to give an informed and free consent “to offer during life a part of their body, an offer which will become effective only after death” (19). Before they are allowed to give the consent to organ donation and transplantation, both donors and recipients should be educated about these procedures and counseled at various steps, as well as being informed that it is permissible to withdraw consent at any time before the procedure (5). The Charter for Health Care Workers states (point 90): “In life or in death the persons from whom the removal is made should be aware that they are donors—that is, those who freely consent to the removal”. In this way, organ donation after death offers to the donors the possibility of “projecting beyond death their vocation to love […] a great act of love, that love which gives life to others” (8). Organ donation by a living donor is regarded as a human and generous, even supererogatory, act to save a human being whose life is threatened by disease or whose quality of life is severely impaired. The consent to a potentially hazardous course of action, however, requires to take into account how donation will influence his or her own future and that of others, such as relatives, who may depend on him or her. Considering the moral obligation for a living donor to weigh and the foreseeable results of his or her action for all concerned, it might be argued that consent to such donation should be a shared decision of the donor and those closely related to him or her (2). One of the major objections to living organ donation is that there is the potential for the prospective donor to be induced or coerced in some way. In such cases, the donation would not be sufficiently voluntary to be called a gift. Conversely, the prospective donor could demand something from the recipient before donating the organ to him or her (7). As the efforts to use altruism for organ donation have met with limited success, several recent approaches have been adopted to prompt self-interest in organ donation by financial incentives. Financial incentives are payments, and the living donors (or the family of a deceased donor) become vendors of parts of the human body. Buying and selling human organs would lead to an increasing objectification of the human body, compromising the respect for the human dignity (20–22). Therefore, allowing forms of financial incentives to organ sources should not be considered an ethical attitude. In the same way, in the case of deceased organ donors, extensive adoption of presumed consent procedures or legislations to provide a solution to the problem of supply and demand are irrespective of the real willing of the person in life and, therefore, they are ethically inadequate solutions to help some unfortunate members of society (2). Perhaps altruism alone will not be enough to satisfy the needs of the thousands of patients who are on organ transplant waiting lists, but not all means (i.e., marketing of bodily parts) are ethically acceptable to a certain end (i.e., supply of organs) (10). Especially in living donation, great attention towards psychologic and emotional pressure must be paid. For example, the decision to donate prompted by the emotional well-being that the donor may experience from receiving many warm appreciations by relatives could be regretted after the donation if the attention refocuses on the recipient. Organ donation must primarily be based on a moral decision rather than on a psychologic enthusiasm. The Justice Principle The justice principle requires that equity and fairness in the organ allocation system must be guaranteed. The growth in living organ donation, welcomed by many as an answer to the shortage of cadaveric organs donated for transplantation, gives rise to a number of serious ethical challenges regarding just and fair allocation of organs. In the United States, for instance, the current growth has been driven by several factors, including direct appeal by waiting-list patients through media or pay-commercial websites that allow patients to advertise their need in the hope that a sympathetic person will make a directed donation of the required organ. This kind of non-related directed donation, also called “altruistic living donation”, opens doors to the market of organs. In fact, in the case of living directed acquaintance donation, there is the realistic fear of financial compensation. Especially, commercial efforts fostered by websites enable the recipient to find his or her own donor through high financial incentive, effectively buying an organ. Moreover, this type of donation also gives rise to the social justice concern of recipients unfairly jumping the waiting list through direct solicitation. Furthermore, advertising through news or media outlets or through commercial websites, even if there is no clandestine financial incentive, enables donors to select recipients in a biased fashion, based on race, ethnicity or social status (6). However, we should remember that the present expanding gap between the numbers of patients needing organs for transplantation and the number of organs available is not due to a shortage of potential donors. By far, the most common reason for non-donation is denial of consent by the donor’s family, which may be due to stresses surrounding death, misperceptions about the results of transplantation, mistrust of the medical community in general, doubts that the allocation system is equitable and the lack of understanding of brain death, leading to suspicion that the brain-dead patient is not really dead (13). As death is still a taboo in western societies, people usually do not stop and consider the issue of organ donation, unless they lose a close relative and in a short time and stressful context they are asked to make a choice about organ removal from the deceased’s body, to which they have often come to totally unprepared, as they have not thought through the issue sufficiently. People may refuse to donate their organs or their relatives’ organs because of incorrect beliefs about brain death (for example, that the person is not “wholly” dead) or transplantation procedures (e.g., fairness of organ allocation); they do not know enough to feel able to consent to it. Educational campaigns to increase organ donation and transplantation should consider correction of people’s false belief, and promotion of public information and clear discussion about what is involved in organ donation and transplantation. Moreover, educational programs should include education for social solidarity and education on the more troublesome-specific aspects of organ donation and transplantation. Gift-giving concept, that is giving organs as a gift, implies voluntarism and altruism in organ donation. This feature of organ donation should always be present in current organ donation awareness campaigns and during counseling sessions with relatives of potential organ donors. Educational efforts also primarily include schools and universities as the best target to form a renewed personal and social conscience on the importance of organ donation for transplantation and to state the background for a clear and responsible personal choice. Education on organ donation should focus on the high moral value of helping another human being through donation, and not merely on the emotional participation to the suffering of an individual. As we know, moral ideals and convictions are more steady and durable than the emotional or psychologic feelings, which could easily change to their opposite, simply due to the changing of emotional circumstances in the situation. In our opinion, education is the only ethically feasible way to guarantee the respect for responsible choices of each person in the society and, at the same time, to effectively promote the recruitment of organs. The law is a means (although not the only one) to increase the supply of organs; it sets the context, not only legally but also socially and ethically in which transplantation is performed and regarded. The law works well only when doctors incorporate, through education, the ethical and social view expressed by the law into their consciousness and practice. As the attitude of the medical profession towards organ transplantation could be a factor in inhibiting the supply of organs, this would not be significantly increased by simply changing the law to an opting out principle (4). Conclusions Organ donation is a noble act of human solidarity, therefore, the medical community and society should support this highly valued gift. However, donation remains a personal decision made by the donor being well informed and after expressing the consent. In the respect of the human dignity of the donor, this act should preserve the life of the donor or integrity of the organ system. Although this donation should be encouraged, the sale of organs should be regarded as a reductive, materialist and instrumental use of the person and, therefore, always forbidden. In our opinion, voluntary gift-giving organ donation is the only morally permissible procurement procedure, as it is the only procedure preserving the respect of the donor. Organ donation should be accepted only when performed voluntarily (i.e., organ procurement procedures do not assume that someone should feel obliged to donate his or her organs) and when motivated by altruism. An analogy between organ donation and acts of charity may be a better way of promoting organ donation. The society should maximize the availability of organs for transplantation, eliciting informed and free choice on organ donation. Financial incentives are a form of coercive organ acquisition because they attempt to encourage or force people to do something that they would not otherwise be inclined to do. In the past, some authors (1) identified apathy of the medical profession as the main cause of the lack of organ donors. As organ donation and transplantation usually struggles to cope with difficult ethical questions, we suggest a role for bioethicists on organ transplantation services. Bioethicists can educate staff on the application of ethics to clinical practice of organ donation and transplantation, thus increasing ethical awareness among the medical profession (23). Donation as a responsible choice should be based on information, education and accurate consideration of the reasons for making a personal decision.