Thomas has a history of multiple health issues. When he was a young, he had leukemia and he received a bone marrow transplant from his sister, Susan. At the time, Thomas was 8 years old and his sister was 10.

Thomas is now 25 years old and married to Nancy. His sister, Susan, is 27 and married to Bill. Thomas has experienced a decline in kidney function and will need a transplant. His nephrologist wants him to have a transplant before he has to start dialysis, as this would be better for him. As Thomas received bone marrow from Susan, a donated kidney from Susan has a great chance for success.

Thomas has been seen by the transplant team; and he and his wife are excited that Thomas may be able to avoid dialysis by receiving a kidney from his sister. All that needs to happen next is that Susan contact the transplant center and get started with her workup.

After several weeks, Susan calls and asks about the living donor process. An appointment is set up with the independent living donor advocate (ILDA) , and Susan brings her husband, Bill, with her to the initial meeting. Bill and Susan both inquire about all that is involved in donating a kidney. Bill states that although he and his wife are young, he is concerned about Susan’s long-term health in case she donates her kidney. Bill also shares his concern that his wife could be seen as an organ farm for her brother. It seems to Bill that everyone is just assuming Susan should and will give a kidney to Thomas. Bill asks, “Does it stop with a kidney? What if Thomas needs a liver at some point? Susan didn’t have a choice as a child to give her bone marrow, but she now has a choice about donating a kidney.” Susan and Bill are both assured that if Susan does not want to go forward with donating a kidney to Thomas, her decision will be respected and supported.

A week later, the transplant social worker receives a call from Nancy, Thomas’ wife. Nancy states she had a tense conversation with Bill, Susan’s husband, and cannot believe that Bill is expressing concerns about Susan giving Thomas a kidney. The social worker calls the ILDA to let her know of Nancy’s call and to express concerns about a mounting family conflict.

The ILDA has a number of obligations, not the least of which is to rule out pressure or coercion. Is it possible that Susan is feeling coerced into giving a kidney to her brother? Is it possible that Susan is feeling coerced by her husband not to give a kidney? The ILDA reaches out to Susan. Susan indicates that her husband is still opposed to her kidney donation but she wants to continue with the workup toward donation. She states donation will be her decision and to make her own decision, she wants to follow the typical donor medical workup.

Is it solely Susan’s decision to donate her kidney? Are their possible competing interests? It is the ILDA’s and transplant team’s obligation to do as little harm as possible to a donor. It is also their obligation to rule in or out coercion that is negatively affecting a donor’s ability to make a free choice concerning his or her donation.

It is acknowledged that taking a healthy person and removing a healthy kidney is doing harm, however, this harm is balanced with the autonomous decision of the donor to donate a kidney for the benefit of another. What are the ILDA’s obligations if he or she feels donation might cause emotional harm? Certainly, if an individual is noted to have an emotional or a psychiatric condition that is not currently stable, one would not want to continue with the donation process until the specific psychological issue is satisfactorily addressed. However, what are the obligations of an ILDA, who is concerned there could be future emotional harm to a donor because of entrenched family conflict? What if Susan’s husband will never agree that his wife should donate a kidney to her brother? If a transplant might cause permanent harm to a marriage, should the donation process be stopped?

What are the roles of the ILDA in a case such as this? What does it mean to be an advocate for a potential living donor or to protect a donor’s “best interest?” When might the imperative to protect a potential donor from harm morph into paternalism? How might the ILDA’s perceived advocacy for a potential donor be in direct conflict with respect for the individual’s autonomous decision making? How might the values of an ILDA effect whether a potential donor is ruled out [1]?

One of the outcomes of a National Survey of Independent Living Donor Advocates indicated 50.7 % of ILDAs would rule out a potential donor, given a case scenario that involved some risk to the individual. The potential donor understood the risks and had been cleared for surgery. In addition, the person wanted to continue with donation, despite the risks. Although they had concerns and would note those concerns, only 29 % of ILDAs would advocate for the potential donor’s desire to move forward with kidney donation. Interestingly, of the 20.3 % remaining, some of these respondents did not know they were part of the decision-making process regarding whether a potential donor moved forward with donation [2].

How might an ILDA anchor him or herself in established ethical principles, to make a recommendation about a donor moving forward or not moving forward, when there are competing issues? How might the personal and professional ethics and values of the ILDA potentially affect his or her decision regarding a donor?

One of the first ethical issues to consider is the autonomy of the potential donor. To have true autonomy, a person must have capacity to make an independent decision and must be provided with enough information to be able to give informed consent or informed refusal for a procedure. One must be able to weigh this information and seek clarification, if needed. Autonomy also considers the individual’s value system and how her or his values play a key role in decision making. For example, it is well established that a competent adult who holds certain religious beliefs may accept or refuse a needed blood transfusion, even if an individual patient’s refusal of a needed blood transfusion will likely cause death. Will the individual’s autonomous decision not to accept a blood transfusion be overruled if a spouse does not hold the same religious belief and wants the individual to be given blood? No, the autonomous decision of the individual patient will be respected. Having said this, obviously, one wants to be sensitive to the spouse who is upset about his or her spouse’s life-threatening decision not to accept a needed transfusion. In addition, acceptable medical options can and should be offered to help save the life of the individual, as long as the patient agrees. The decision not to overrule a competent person’s stated wishes regarding refusal of blood transfusions is established in legal precedent as well as rooted in the ethical principle of autonomy. Then, should the ILDA be able to overrule a donor if they are competent to make a decision?

In this example, it is of importance that many medical professionals do not hold this religious belief and disagree wholeheartedly with a person who refuses a needed blood transfusion. From a medical perspective, it is not in the “best interest” of the individual to refuse a needed transfusion. There is a direct conflict between a patient’s desired wish to forego a needed procedure and what is in the best interest of the patient, from a medical perspective.

This example illustrates the need for medical professionals to acknowledge their own value systems. One may approve or disapprove of another’s treatment decision, depending on how much this decision does or does not resonate with a person’s own value system. However, treatment decisions made by an individual “patient,” who has capacity and understands the potential benefits and burdens of his or her decision, will typically be honored. The importance of honoring a competent person’s treatment decisions was first established in the landmark case of Schloendorff v Society of New York Hospital. Justice Benjamin Cardozo wrote “Every human being of adult years and sound mind has a right to determine what shall be done with his own body…” [3]. This case challenged the prevailing medical practice of paternalism and helped create the concept of a competent person’s right to give informed consent or informed refusal to any medical procedure. A “patient’s” autonomous decision regarding treatment should be respected rather than overruled by the physician.

In Susan’s case, among other things, we need to explore the principle of autonomy. Autonomy can, at times, be negatively affected or compromised by coercion.

What is pressure and/or coercion? There are many types of coercion, including physical, psychological, and even financial. At its base, coercion is the manipulation or pressuring of another to try to get the person to do something he or she might not truly want to do. One can use guilt, social pressure, financial incentives or disincentives, and other methods in attempts to get a person to conform to another’s wishes or desires [4]. Many ILDAs have talked with a person who did not really want to donate an organ, but felt pressured or was “volunteered” by others. This type of potential donor can feel trapped and continues to move forward without really knowing how to get out of donating.

In these types of cases, it is an obligation of the ILDA to try to ferret out these concerns. Others, like transplant social workers, can also help uncover coercion. In true coercion, a person is not making a free choice to donate. Rather, the choice is based on pressure from others. An individual is unable to make an actual autonomous decision, because the person is not acting from a place of true choice.

What about a possible “reverse coercion” of a potential donor? It is really a different side to the same coin of coercion, but in this situation, the potential donor may truly want to donate but is feeling pressured by a loved one not to donate. There may be an implied or real threat to a marriage or other important relationship, if the individual moves forward with donation.

In Susan’s case, we have the potential for both types of coercion. Her husband does not want her to donate, and her brother’s wife wants her to donate. Can Susan make a truly free choice? She may lose her marriage if she goes against her husband’s wishes that she not donate. In addition, her support system could be negatively affected. If she does not donate a kidney to her brother, Susan could cause permanent harm to the relationship she has with her brother and his wife. Is this all too much for Susan?

In Susan’s case, is the ILDA to protect or advocate? Is advocating for Susan different from protecting her in this conflict? When might protecting a person morph into paternalism?

Paternalism “is a behavior, by a person, organization or state which limits some person or groups liberty or autonomy for their own good” [5]. Examples include parents knowing a certain decision will be harmful to a minor child and, therefore, not allowing the child to make a specific decision the parent(s) deem harmful. In adults, a history of paternalism includes doctors or other health professionals believing it was better not to tell a patient his or her terminal diagnosis because it would be too upsetting. The doctor believed the patient could not handle the information and would often collude with the patient’s loved ones to protect the patient from worry.

While this type of paternalism can still exist, it is much less acceptable. Today, there is an expectation that a person needs enough information to fully make an informed treatment decision, even if the information is regarding a terminal diagnosis. One might even argue information is even more important if it is about a potentially fatal condition. Disclosure of benefits and burdens regarding a specific treatment option allows individuals to choose the best treatment choice for themselves. Having said this, it is true that a physician and other medical professionals will hold greater medical knowledge than a “patient” may ever possess. Noting this information gap, what are the main obligations to be met regarding informed consent or informed refusal?

It is acknowledged that the issue of informed consent and informed refusal is a broad topic, rooted in historical atrocities, such as the Holocaust and experiments on uninformed research subjects. One can find volumes written on this important issue. For the purpose of this chapter, an outline and an exploration of key elements of informed consent or informed refusal will be addressed.

First, does the person have capacity to understand the medical information being offered? It is not enough to say a person is competent. Competency is a legal term and simply means the person is over the age of 18 and has not been declared in a court of law as mentally incompetent.

Does the individual possess the ability to assimilate and weigh new information? Does he or she need an independent/professional/nonrelated translator or sign language interpreter to ensure understanding? Is the information given to the individual in a way that maximizes his or her ability to understand a procedure? It is typically not enough to just give a person a “consent” form to read and sign. A person with no medical background may need medical terms or procedures to be explained. It is important to ascertain whether the individual can explain back to the medical professional, his or her understanding of the proposed procedure. Are there gaps in knowledge that need clarification? If so, after further explanation, does the individual have a clear understanding of the proposed procedures with its potential risks and benefits? If so, one has met part of the process of informed consent.

Is the decision or desire to donate or not to donate, voluntary? As mentioned previously, pressure and coercion must be ruled out. Is the individual making a decision to donate because he or she wants to donate or because someone else wants him or her to donate? Conversely, is the individual being pressured not to go forward with donation, even though the person wants to truly donate? The issue of coercion can also include financial inducement. Is someone being offered financial incentives or disincentive in exchange for donating an organ? The key point regarding coercion is that an individual is experiencing and succumbing to some type of pressure to donate or not to donate an organ. When coercion has trumped autonomy, an individual’s ultimate “decision” is based on another’s wish, not on one’s own independent desire to freely donate an organ.

Important in ruling out potential pressure or coercion is whether the individual is able to make an informed decision based on his or her own values and desires. Most humans, at some time in their lives, have felt the pressure from another to do something either against their better judgment or against their own values. However, just because a person feels this pressure, it does not mean that she or he succumbs to the pressure. A person can try to influence another, using guilt and other tactics, but this pressure does not automatically work. Is there potential that pressure will influence a decision? Certainly, but not necessarily.