Living Organ Donation and Transplantation: Principlism or Charity?

Scaria Kanniyakonil
2007
Reproduced with Permission

The successful transfer of tissue and organs from one person to another has become one of the great achievements of modern medical science. The practice of living organ donation and transplantation gives rise to many serious medical, psychological, emotional, social, legal, and ethical issues. There are risks and benefits both to the donor and the recipient. Body parts become available in a world-wide market, and they become a commodity to be exchanged for money. As a result, this practice may leave the donors prone to exploitation by recipients, middlemen at the trade, and sometimes even by personnel at the hospital. There are many religious and secular ethical approaches addressing this question. In this paper we apply and evaluate the ethical approaches of principlism and the virtue of charity in living organ donation and transplantation.

1. Principlism in Medical Decision Making: Anglo-American Tradition

Anglo-American principlism offered, in the twentieth century, the most important contribution for medical ethics with regard to the ethical debate about living organ donation and transplantation. Both deontology and utilitarianism have their own merits and demerits and the approaches are entirely different. In this context, taking the advantage of deontology and utilitarianism together, the Anglo-American tradition of principlism offers a new ethical approach to medical issues.

The term principlism means "the practice of using 'principles' to replace both moral theory and particular moral rules and ideals in dealing with the moral problems that arise in medical practice."1 Tom L. Beauchamp (rule utilitarian) and James Childress (pluralistic deontologist) are the exponents of Anglo-American principlism. This approach is based on four principles: (1) respect for autonomy; (2) non-maleficence (primum non nocere, in the first place, do not harm); (3) beneficence, or doing good (a group of norms for providing benefits and balancing benefits against risks and costs); and (4) justice (a group of norms for distributing benefits, risks, and costs fairly). The principles of beneficence and non-maleficence involve an obligation to help others and an obligation not to harm others.2 The principle of justice involves an obligation to deal fairly with competing claims,3 whereas the principle of autonomy or self-determination implies informed consent of the persons involved.

In the following sections, we divide Anglo-American principlism into three parts. In the first part, we will discuss the four principles. In the second part, we will apply principlism to living organ donation and transplantation. In the third part, we will give our critical evaluation.

1. 1 The Description of the Four Principles

In this section we describe the four principles of principlism.

1.1.1 The Principle of Respect for Autonomy

Beauchamp and Childress present respect for autonomy in a wider perspective. The concept "autonomy" is etymologically composed of the Greek words autos (self) and nomos (law or rule). The Greek word autonoma originally referred to the independence of city-states from outside control and the freedom to legislate their own laws.4 The term autonomy generally means "being in a state of self-rule or self-government, i.e., being independent from other nations, states, persons or other living beings, qua legislation for the direction of one's life."5 Beauchamp and Childress observe that autonomy has different meanings like "self-governance, liberty rights, privacy, individual choice, freedom of the will, causing one's own behavior, and being one's own persons."6 They further note that all theories of autonomy considered two norms: "1) Liberty (independence from controlling influences) and 2) agency (capacity for intentional action)."7

In the opinion of Beauchamp and Childress, the principle of respect for autonomy means the recognition of the right of other "autonomous" persons to carry out their views and wishes on the ground of his/her values and beliefs.8 Beauchamp and Childress also represent the influence of Immanuel Kant and John Stuart Mill for the interpretation of the respect for autonomy. The main difference here is that Kant emphasizes freedom of the will whereas Mill stresses freedom of action.9 Kant's approach is deontological.10 He argues that with autonomy one directs oneself and makes "one's own choices" on the basis of moral norms. These moral norms are universal and, at the same time, "one's own," and they are valid for everyone.11 Furthermore, Kant states that the "principle of autonomy" includes "the principle of respect for persons."12 In addition, Kant observes that autonomy is the "... practical principle of the will as the supreme condition of the will's conformity with universal practical reason, namely, the idea of the will of every rational being as a will that legislates universal law."13

John Stuart Mill's approach is utilitarian. He gives a radical interpretation of autonomy. In his book On Liberty, he argues that "the principle of utility [is] to permit all citizens to develop their potential according to their convictions, as long as they do not interfere with a like expression of freedom of others."14 So, for Mill, autonomy is an essential dimension of a human person. All want to be authors of their own lives.15 To put it more clearly, the person is free from everything.

Mill's approach takes into account both the non-interference with and an active strengthening of autonomous expression, whereas Kant holds that "all persons have unconditional worth." What makes autonomy important for Kant is not primarily that it can form the basis of various rights, but that it is necessary for any claim to true moral agency. For Mill, autonomy is not valuable in itself because it directly leads to the production of utility.16 Autonomy is in reference to "the individuality of autonomous agents."17 Thus, L. Beauchamp and J. Childress incorporate the views of both Kant and Mill for the principle of respect for autonomy.18 They argue that the principle of autonomy is not illustrated either as absolute or as too wide.19 However, they are more similar to the Millian concept of autonomy.20

1.1.2 The Principle of Non-Maleficence

The principle of non-maleficence asserts one's obligation not to inflict harm intentionally. This has been closely related in medical ethics to the maxim primum non nocere: Above all (or first) do no harm. For Beauchamp and Childress the principle of non-maleficence contains the following rules: "do not kill, do not cause pain or suffering to others, do not incapacitate others, do not cause offense to others, do not deprive others of the goods of life."21 The principle of non-maleficence is supported by many ethical theories, especially utilitarian and nonutilitarian theories.22

1.1.3 The Principle of Beneficence

Beneficence is taken from the Latin word bene (well: comes from bonus, good) and facere (to do).23 The term beneficence has different meanings such as "the doing of good, active promotion of good, kindness, and charity."24 The principle of beneficence refers to a moral obligation to act for the benefit of others.25 It is a universal moral obligation in many moral theories and it is widely regarded as a fundamental moral obligation in health care. Acting so as to benefit oneself may include directing our natural self-interest to the benefit of others. It obliges one to help others for their own legitimate interests. In some ethical theories, especially utilitarianism, beneficence (to benefit others) and benevolence (the "character trait or virtue of being disposed to act for the benefits of others") have played a central role.26

The principle of beneficence includes two principles, namely, the principle of positive beneficence and the principle of utility. The principle of positive beneficence demands that physicians should do good for others, and to do positive benefit for society.27 The principle of utility requires that "in medical practice and research […] risks of harm must constantly be weighed against possible benefits."28 This principle of utility points out that "we also have a moral duty to weigh and balance possible benefits against possible harms in order to maximize benefits and minimize risks of harm."29 According to Beauchamp and Childress, the principle of utility is taken as a norm in medical problems because there is a kind of balance between benefit and harm in the principle. In brief, there should be a balance between 'possible beneficial actions' and 'possible harmful actions.'30

1.1.4 The Principle of Justice

Beauchamp and Childress explain that different terms such as fairness, desert (deserved), and entitlement (entitled) are used by philosophers to express the concept of justice.31 On the basis of these concepts, one can define justice as "fair, equitable, and appropriate treatment in light of what is due or owed to persons."32 We find the idea of justice in many moral theories, including those of bioethics.33

Beauchamp and Childress present distributive justice as "fair, equitable, and appropriate distribution in society determined by justified norms that structure the terms of social cooperation."34 The scope of distributive justice includes decisions on property, resources, taxation, privileges, opportunities, public and private institutions such as the government, and the health care system.35 Scarcity and competition cause several dilemmas in distributive justice.36

Beauchamp and Childress observe that no single principle of justice can solve these problems.37 In order to avoid problems in distributive justice, they propose two principles of justice: the principle of formal justice and the material principle of justice. The principle of formal justice is called "'formal' because it states no particular respects in which equals ought to be treated equally and provides no criteria for determining whether two or more individuals are in fact equals."38 When material principles of justice are treated, there should be equal treatment, and they distinguish "the substantive properties for distribution."39 Some authors formulate valid rules for material principles of distributive justice. They are: "1) to each person an equal share 2) to each person according to need 3) to each person according to effort 4) to each person according to contribution 5) to each person according to merit 6) to each person according to free-market exchange."40 Beauchamp and Childress comment that certain theories of justice consider all six norms as logical, whereas other theories include more than one of these norms only.41

Moreover, several systematic theories have been applied to decide the distribution of goods and services, especially in the case of health care. They are the following: 1) Utilitarian principles give a variety of steps for maximizing public utility. 2) Libertarian theories stress "rights to social and economic liberty." 3) Communitarian theories describe "the principles and practices of justice that evolve through traditions in a community." 4) Egalitarian theories state "equal access to the goods in life that every rational person values."42 Beauchamp and Childress observe that these different theories of justice attempt either to get "a balance between competing social goals or to eliminate some social objectives while retaining others."43 They propose both utilitarian and egalitarian concepts of justice as a help for the allocation of minimum health care.44

1.2 The Application of Principlism to Living Organ Donation and Transplantation

We have seen the concept of four principles. In this section we apply principlism to living organ donation and transplantation.

1.2.1 The Application of the Principle of Respect for Autonomy

The concept of autonomy in living organ donation and transplantation can be seen from a normative (Kantian) and a radical or liberal (Millian) point of view. A normative understanding of autonomy does not allow living organ donation at the cost of respect to human person. Autonomy should be considered in the context of the dignity and the vulnerability of the persons,45 when applied to living organ donation and transplantation. The respect for the dignity of the human person in organ donation and transplantation does not favour paid donation since it leads to the degradation of persons as means. So the principle of dignity requires that organ donation should be on the basis of "free and generous gift."46 The concept of dignity also respects the dying person and the potential organ donor, especially children and physically incapable persons. For example, persons who are in a "vegetative" state cannot be considered as potential donors.47 Organ transplantation also highlights the vulnerability of human beings, especially in the case of body. Organ transplantation "intervenes in the vulnerability of both the patient and donor."48

However, a radical interpretation of autonomy allows any kind of living organ donation and transplantation. The individual has the full right over his/her body if he/she makes a decision without any force. In this case, it is the freedom of the donor to sell organs and it is also the freedom of the recipient to buy the organs. In the radical interpretation of autonomy, the donor and the recipient have full freedom in transplantation. One is not concerned about any fundamental lifestyle or any religious values. On the contrary, all values are seen from the perspective of personal autonomy of the individual.49 This is the radical approach of autonomy to living organ donation and transplantation.

Voluntary consent and forced consent are another issue under discussion in living organ donation and transplantation.50 The voluntary consent of the human subject is essential for living organ donation. An individual is not obliged to donate his/her organ, even in a situation of grave emergency. Additionally, individuals must not be forced to donate organs even in a justified emergency.51 This means that the person involved should have the legal capacity to give consent. One should be so situated in the condition as to be able to exercise free power of choice. Again, one should be free from the intervention of any element of force, fraud, deceit, pressure, overreaching or other ulterior form of constraint or coercion. He/she should be provided with sufficient knowledge and comprehension of the subject matter involved so as to enable him/her to make an enlightened decision.52 The consent should be "fully informed and free of coercion."53 To be precise, the donors should be mentally competent.54 Further, forced voluntarism of consent (coercion) happens when there is some form of psychological force from outside. This may come from the recipient or from a third person through some kind of "moral pressure on the potential donor." This force may also be linked with financial motivation.55 Hence, G. R. Dunstan argues that consent is the main foundation for donation.56

The principle of autonomy requires that the patient, or the living donor, has genuine consent in deciding whether to make a donation or not.57 The general principle that surgery cannot be carried out without the consent of the person to be operated upon is equally applicable to organ transplantation as well. The operation to remove the organ from the donor must, therefore, have the donor's consent. Recipients also should give their consent for the operation.58 A free, informed consent, especially when explicitly given, is certainly the best way to express our social solidarity.59

Sometimes it is very difficult to make an assessment of fully informed consent of the potential donors. For instance, in the case of a liver failure patient, the need for the organ is very acute. This situation might force the living liver donors to make an immediate decision.60 More problematic are decisions made on behalf of minors and incompetents.61 In such cases, both the principles of respect for autonomy and justice are involved. For instance, let us consider a possible dilemma within a family: a child is suffering from a progressive liver or kidney disease and is in need of a transplant and the only suitable donor is a minor sibling. The parents face legal and moral conflicts of duties. They have a legal responsibility to protect both children. But a parent cannot exercise authority over a child when the proposed course of action is not in favour of the child's interests, especially when this child may face risks relating to the surgical intervention. The main form of appeal in such a case is the child/donor's psychological interest. One cannot establish a voluntary and free consent in a case where there is psychological pressure from family members on a particular member to donate his/her organs. This course of action may involve a potential conflict with the principle of respect for autonomy, as it appears to be an example of treating children as means.62 So what we need is, as Paul Ramsey argues, a "reasonably free and adequately informed consent."63

Another observation is that autonomy is seen from the realm of social solidarity. For instance, an incapacitated person is unable to make his/her consent.64 Nikola Biller-Andorno, George J. Agich, Karen Doepkens, and Henning Schauenburg observe that the law or ethical theory of autonomy does not work with the potential living donors like children and persons who are unable to give genuine consent. In this context, autonomy should be seen from the context of each individual case. The emotional and relational context of the donor to the recipient will help to make adequate ethical decisions. In their opinion, this is a comprehensive framework for donors who are unable to give "full informed consent."65 However, this still seems to be an unresolved problem.

Autonomy is the moral key to living organ donation. Sometimes, autonomy brings about an ethical dilemma in the realm of living organ donation. If the donor's decisions are not autonomous or self-determined, this can lead to treating a person without sufficient respect. Autonomy requires that the donor must be able to exercise the power of free choice. As we have seen above in the matter of living organ donation, no physiological benefit is to be expected by the donor. It is clear that the first matter of critical importance is that the amount of risk, pain, and length of incapacity is communicated to the donor so that an informed decision can be made.66 But, at the same time, Thomas A. Shannon notices the relevance of the principle of autonomy in the case of the shortage of organs for transplantation. He says that sometimes in our society and in medical practice autonomy proves inadequate to help us to resolve critical social issues. In order to solve the problem of a shortage of organs (or similar problems), autonomy should be seen together with the idea of common good.67 Here organ donation and transplantation is seen more from the perspective of the freedom of the person within the realm of solidarity.

As a whole, the ethical debate about the autonomy (right) of the healthy person to donate his/her organ has both merits and demerits.68 The respect for autonomy is the main issue in living organ donation and transplantation.

1.2.2 The Application of the Principle of Non-Maleficence

Our question is, how can we apply the principle of non-maleficence to living organ donation and transplantation? The fundamental ethical and legal starting point is the common law or principle that one should not be killed or seriously injured. This is why the donation of a living heart is excluded. From a legal standpoint, this is not a matter to be settled with reference to an individual's consent. Since it is a matter of public interest, one cannot consent to certain forms of harm. Even with the consent of the person concerned, the principle of non-maleficence forbids mutilation.69 Thus, the main problem in living organ donation is not 'freedom of choice', even if some kind of force is exercised on certain occasions. But, there is a risk to the healthy donor. For instance, in the case of a liver transplant, the estimation of the risks is not clear for the donor.70 This discourages certain types of living organ donation and transplantation.

However, in certain circumstances harm can be avoided or limited solely by inflicting injury. Sometimes injury is acceptable in order to avoid a greater harm,71 which is the justification for modern medical treatment. Many surgeons regard the removal of a healthy organ, such as a kidney, from an individual who has given autonomous consent and faces minimum risk, as an ethically acceptable action. Hence, it is seen that the starting point of an ethical inquiry into living organ donation is the assessment of harm and risk taking.72 The autonomous organ donor is one who takes reasonable risks to save someone else's life. If the supply of cadaveric organs is sufficient, there is no need to engage in any risk or discomfort involved in living donation.73 There are no physiological benefits for the donor, but there are psychological benefits. Living donation, in spite of risk and discomfort, is generally accepted in the clinical context due to the scarcity of cadaver donors.

Furthermore, Beauchamp and Childress observe that sometimes we have to do harm to the body in order to prevent harm.74 In relation with this, Irwin Kleinman and Frederick H. Lowy say: "Ethical dilemmas by their very nature necessitate compromise. Living organ donation compromises the principle of non-maleficence, since healthy donors are allowed to assume risks."75 Moreover, they propose another argument in the form of the following question, viz., which does more harm: "the operation on the donor or the potential harm resulting from not donating?"76 In their opinion, living organ donation makes an ethical compromise when the donor consents to an operation to donate his/her organs.77

Another observation is that in the case of blood donation, one does not see any harm or risk to the donor. Hence, it is acceptable according to the principle of non-maleficence. In the case of living organ donation, it is not the same. For instance, in cornea donation, when the donation decreases the sight of the donor, it is a "bad means to a good end."78 But in the case of kidney donation, donation is morally right. The reason is that even if the donor faces some risk, there is no functional decrease of the organs.79 In this case, one justifies the principle of non-maleficence with regard to living organ donation. In the opinion of Mark Siegler, today we can see an equilibrium between harm and benefit in medicine.80 The harm to the donor and the benefit to the recipient are taken together in living organ donation and transplantation. So Rosamond Rhodes observes that organ transplantation changes the traditional notion of doing no harm.81

1.2.3 The Application of the Principle of Beneficence

How can we apply the principle of beneficence to living organ donation and transplantation? In transplantation we are damaging the donor by the simple fact that we are doing surgery on him/her. However, the immediate availability of a kidney with the highest possible quality and potential benefit is clearly in favour of the recipient, though there is some medical harm to the donor.82 Hence, the question faced by surgeons is whether it is right to remove parts of one person's body to promote the health and well-being of others. It is ethically acceptable if harm to the self is a side effect.83

Beneficence is not obligatory in some cases. For instance, the donation of a kidney is good but not a moral obligation. In some cases it may cause harm to the donor. It is a serious danger for one to offer both kidneys for transplantation. Beneficence does not include this kind of extreme altruism. One is not morally bound to do good to other persons in all circumstances.84

There is another ethical problem that is connected with paid organ donation and beneficence. Even if the donor promotes good by helping patients who are in a critical stage, paid donation causes a harm to the donor and to the society. Beneficence does not favour harm to others, but it protects the rights of others.

Another debate in relation to beneficence is paternalism.85 There is always a conflict between the principle of beneficence and the principle of autonomy. In certain medical cases, paternalism makes the demand that "beneficence should take precedence over autonomy."86 For Edmund Pellegrino and David Thomasma, beneficence includes autonomy and paternalism, which could foster good to the patient.87 According to Carol Gilligan, the notion of beneficence is grounded on the relational dimension of the self.88 Further, one can see that both paternalism and Mill's harm principle89 depend on the principle of beneficence.

Regarding living organ donation and transplantation, donors face unknown risks. Here the ethical problem is: who should make the decision? The donor or the personnel at the hospitals? In the US, many transplantation centers prefer a paternalistic decision. They will not allow the donor to seriously risk his/her life. For instance, when one donor has the problem of "orthostatic proterinuria,"90 the centers will not allow him/her to donate.91 There are certain reasons for these types of paternalistic interventions: 1) The donor has to face risks in a major surgery.92 2) Some physicians allow paternalistic intervention because they consider the risk of the donor and the benefit of the recipient within the scope of proportionality.93 3) There may be an obstacle regarding informed consent such as the external (family) or internal (guilt) coercion.94

Physicians want to do their best for the donor. However, we can see the eventual conflict between the physicians and the donor.95 This is very clear in the case of kidney donation. 1) Physicians may not be in favour of emotionally related and genetically unrelated donor (spouse).96 2) In certain cases, the values of the physician and the donor may not go together. Donors want to take risks. The paternalistic attitude of many transplant centers fails to give proper respect to the donor, especially to those who are taking serious risks.97 3) Sometimes transplant centers do not encourage kidney donation.98 However, in many other cases the transplant team may express very positive attitude to the donors and the recipients.99

Another problem is that the paternalistic counselors make decisions for their donors.100 It would be against informed consent if the decision is made by others instead of the donor.

From a critical point of view, the general understanding of non-maleficence prohibits living organ donation, especially when there is a high harm to the donor. But, beneficence to the recipient promotes living organ donation. In this case, there is a contradiction between the principle of non-maleficence and beneficence. Another observation is that beneficence works more on the level of the physical well-being of the person, but we lose sight of the psychological and social aspects. The difficulty with the theoretical approach of beneficence is that it does not have an integrated concept.

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