Keywords

The Problem

The most basic commitments of medical ethics are that health professionals should act for the good of patients and society and in doing so, at least try to avoid harm. Living organ donation seems to run afoul of both the principles of beneficence and avoiding harm. The surgery does not provide a medical benefit to the organ donor, and in fact, it can potentially impose significant harms: risks, pain, disability, impaired function, and disfigurement.

From the recipient’s perspective, living organ donation provides a tremendous life-saving benefit. From the living donor’s perspective, organ donation may achieve an important good in that it promises to save a life. From the donor’s perspective, the anticipated benefits provided by the transplant can be worth the risks and harms. From the perspective of a transplant program and the medical professionals who support its activities, with expertise and careful screening of recipients and donors, the risks and harms of living organ donation can be reasonable relative to the anticipated benefits.

Thus, for the donor as well as for transplant professionals, the critical ethical factor for living donor organ transplantation is that donation should be voluntary, and the donor should be acting autonomously. If a living organ donation was not voluntary, there would be no reason to view the action as good in the donor’s eyes, and, in most cases, no reason to see the potential risks of pain, disability, impaired function, and disfigurement as anything other than ethically unacceptable harms. Thus, to more fully explain what is required for the ethical conduct of living donor organ transplantation, more has to be said about the concepts of voluntariness and autonomy.

Voluntariness and Autonomy

A living donor advocate (LDA) has serious responsibilities. On the one hand, the LDA has to ensure that donation decisions are voluntary and not coerced. On the other hand, the LDA has to help the would-be donor to explore and evaluate their decisions by probing their reasons so that their choices are actually autonomous and reflect their values and priorities. Both responsibilities require a clear understanding of the concepts of autonomy and voluntariness .

For ancient Greek and Roman moral philosophers, it was critical to understand the circumstances that must obtain for someone to be held responsible for what they did. Aristotle explained that people should only be praised or blamed for their voluntary actions. In his terms, an action is voluntary only when “the moving principle” originates from the agent. He explained that when some physical force caused an outcome, what occurred was not a voluntary action. For example, when a train lurches and you fall onto someone’s foot and cause pain, what you did is not voluntary and you should not be blamed. He also explained that when nonculpable ignorance is involved, what occurs is not a voluntary action. For example, if there is no reasonable way for you to discern that the medicine you administer to a patient is contaminated, your administration of the contaminant is not voluntary. You should not be blamed for the illness that the patient suffers as a consequence.

Aristotle and the Stoics extended the concepts of voluntariness and responsibility to self-creation, in the sense that they believed individuals are responsible not only for their actions but for their characters and their motivatons as well. According to them, by acting as you do, you develop habits or inclinations to take pleasure in certain behaviors and to act in similar ways in the future. Similarly, you become pained by other behaviors and develop an aversion to them. In this way, you create your own disposition and develop your own tendencies to act as you then do. Because these results are consequences of your own previous voluntary actions, you are responsible for who you are. In this light, we can understand professional training as not just mastery of a body of knowledge, but also as the development of the habits and attitudes that we associate with professional responsibility.

For Aristotle, an act done in response to pressure is still a voluntary act [1]. Given the nature of the action and the nature of the pressure, what is done may be more or less excusable. Aristotle provides two telling examples. First, he describes a ship captain who finds himself in a storm. The captain must decide whether he should throw his goods overboard or not. If he does, he loses the goods and incurs a significant financial loss, but he also increases his chance of surviving the storm. If he does not, his chance of surviving the storm is diminished, but if he survives he still has his goods. Clearly, the captain does not choose to be in a storm, but given the circumstances and the pressures that they impose, the choice of what to do is his. Whichever course he chooses, his action will be voluntary and he should be held responsible. Aristotle’s second example is a man threatened by a tyrant. The tyrant demands that the man do something shameful, and he threatens to harm his family if the man should refuse. Clearly, the threat is unwelcome pressure, but in Aristotle’s eyes, the man’s response is voluntary. Imagine that the shameful act is writing an ode of praise to the tyrant, whereas the threat involves serious physical harm or death to a loved one. That shameful act could be more excusable than if the threatened harm is only tickling a loved one with a feather or less excusable if the shameful act is far more reprehensible.

The concept of voluntariness is now closely related to the concept of autonomy. Autonomy was originally a political concept rather than a concept used in discussions of individual action. In Classical Greek writing, “autonomy” was used to describe civic communities that were self-governing and independent of any other political authority. In the Renaissance and Early Modern Period, “autonomy” was still used as a political concept, but then it designated independence from a religious authority.

In the Modern Period philosophers such as Hobbes and Spinoza employed the concept in their writing, but without using the term. Autonomy , or self-governance, does not take hold as a moral concept by that name until Immanuel Kant (1724–1804) used it. For Kant, autonomy is the distinctive capacity of individual rational beings. It is the power of legislating for oneself, of giving oneself moral rules for governing one’s own actions. Autonomy in this self-rule sense is the distinctive ability that gives beings their moral worth and makes their actions and choices worthy of respect.

Three senses of autonomy can be distinguished in Kant’s use of the term. In its primary sense, autonomy is a self-regulating ideal. As an autonomous agent, I should always consider my actions in terms of rules that I would endorse for all similarly situated individuals, and I should conform my actions to the principles that I endorse. In its secondary sense, the concept defines how I ought to treat others. In dealing with other adults who are capable of autonomous action, I should respect their choices, presuming as far as possible that their choices are directed by autonomy and conform to the principles that the person has endorsed. The third sense of autonomy defines how one ought to treat those who are not now capable of autonomous action, but who may be in the future. Their autonomy should be promoted, and they should be guided to act autonomously.

In contemporary philosophical literature, numerous authors have tried to refine the concept of autonomy and clarify what it means to be a moral agent. In doing so they have put forward an array of different accounts, some very similar to others and some that present a somewhat distinctive view of what autonomy entails. The samples that I describe below illustrate the scope of these different positions on what autonomy entails.

Harry Frankfurt has famously put forward the view that an autonomous action conforms to a higher-order volition [2]. In other words, Frankfurt asks us to consider whether we would will ourselves to be guided by the desire that we are acting upon. For example, you may desire a slice of pizza, but would you will yourself to be moved by that desire? If yes, perhaps because it will satisfy your hunger, and you love pizza, and it is an affordable snack, having the slice is autonomous. If instead you would will to be free of the desire and able to resist the temptation, eating a slice is not autonomous. In Frankfurt’s view, autonomy is about being the master of one’s desires. Someone who is dragged about by desires is a slave to passions and not free.

Gerald Dworkin offers a similar account of autonomy that uses the concept of future-oriented consent [3,4]. In determining whether you or another is acting autonomously, Dworkin asks you to imagine whether the agent would be happy with the decision tomorrow. Using the pizza example again, if I would be upset when my jeans would not zip up tomorrow and tell myself that I should have resisted the pizza yesterday (all three slices of it), then my indulging in it yesterday was not autonomous. Using a medical example, imagine a Jehovah’s Witness patient who refuses blood transfusions if needed during surgery. If that patient explains that he would believe a great harm had been done to him and would not want to live if he awoke to the news that his life had been saved with a blood transfusion, we should take his refusal to be autonomous and respect his choice.

Christine Korsgaard relies on a very Kantian notion of autonomy [5]. She explains autonomous action as acts that are considered and reflectively endorsed. For her, an impulsive or thoughtless choice is not autonomous. For Korsgaard, only an action that has been duly considered and evaluated, and found to be something that I would not consider wrong when done by another in similar circumstances would count as autonomous and worthy of respect from others.

Several authors have explained autonomous action in terms that suggest being true to myself or consistent with my values, goals, and commitments. Bernard Berofsky uses the terms self-authorization, self-realization, and self-expression to explain that I act autonomously when my action coheres with my view of who I am [6]. If I am astounded by something that I did and say to myself, “Eating that pizza was not like me at all. I’m a vegan and I regard my body as a temple,” then eating the pizza was not autonomous. Similarly, J. David Velleman explains autonomous action as an expression of identity [7]. For him, an action is autonomous when I can identify myself with the action and when it fits with how I describe myself as self-narrator of my life. Marina A.I. Oshana offers a similar account [8]. For her, when there is an absence of alienation, the action was autonomous. When I appreciate that I did it, that it was not the fever or the alcohol that made me do it, it was my choice, then the action is mine. When instead I think, how could I have done that, it is not like me at all, then the action is not autonomous, it belongs to some alien other, and I am not responsible for the outcome.

Each of these views has something to it that rings true, but also some shortcomings. For example, Frankfurt’s higher-order desire model and Dworkin’s future-oriented consent model work well with the Jehovah’s Witness whose priorities are clear and fixed. When an agent is more ambivalent and then makes a choice, it is not at all clear that the model is useful.

For example, if someone chooses to be a living liver donor and the transplant recipient develops primary nonfunction, would the donor be happy with yesterday’s decision tomorrow? Or, if someone decided against being a living donor and their loved one died from liver failure, or received a successful transplant with a cadaveric organ, could we be confident that their decision conformed to their higher order volition? No answer is obvious. Thus, many of our actions and choices do not fit neatly into the Frankfurt and Dworkin schemes. If pressed, they might conclude that choices reflecting ambivalence are not autonomous. That stand would go too far in the direction of excluding adult actions from responsibility.

Korsgaard’s view also seems too demanding. Although we may carefully deliberate about what to do when we face difficult dilemmas, most of what we do throughout the day is far more spontaneous. Most of the actions we perform are not carefully considered in terms of moral rules that we might endorse. Ultimately, this view appears to set too high a standard and exclude most of what we do from being worthy of the respect of others.

Berofsky, Velleman, and Oshana’s views seem to have the opposite problem. Instead of limiting the actions that merit respect, they would excuse actions from responsibility whenever the agent subsequently denied identity with them. According to their positions, whatever I do when I am not feeling myself could not be counted as autonomous and could not be blamed. That seems far too cavalier.

Lessons from Being a Living Donor Advocate

As an LDA my task involved interviewing potential living liver donors to determine whether or not their decision to be a donor was informed and voluntary. In philosophic terms, I was trying to assess whether the donors’ decisions were autonomous and genuine expressions of their agency. By the time they reached me, potential donors had typically spent weeks, months, or years contemplating their donation, speaking with doctors and family members, reading the literature, and surfing the Internet to explore the experiences of others. If any, these donors’ choices bore the marks of careful deliberation and considered judgment. Their decisions to undertake the significant risks and harms involved in donating up to 70 % of their livers were not rash, impulsive, or whimsical.

In my tenure as an LDA I drew on what I had learned from the philosophic literature on autonomy . For the most part, philosophers present their positions on autonomy and agency as vying theories or models of how to correctly conceptualize the decisions for which people can be held responsible. Donors’ accounts of how they reach their decision to donate and the variety of conceptual terms that they employ in describing their thoughts and their motivation suggest that many of the standard views of autonomy and agency are all similarly flawed. To the extent that the individuals explaining their organ donation decisions have reliable insight into their own mental processes, the range of ways in which they characterize their decisions challenge all of the simplistic conceptions of autonomy. My experience of serving as an LDA and witnessing their testimony provided me with significant insights into the concept of autonomy . Some examples from the interviews that I conducted have been informative in that they illustrate the variety of ways that people experience and conceptualize their donation decisions.

Several of the potential donors who I interviewed made statements like this, “Of course I’m afraid and would prefer not to, but this is the right thing for me to do.” Such declarations perfectly expressed Frankfurt’s notion of autonomy . These potential donors were in control of their desires and their choices to become living donors conformed to their higher-order volitions. They willed that their actions be governed not by fear, but by their conceptions of their moral duty.

Similarly, a number of potential donors made statements such as, “I couldn’t live with myself if I didn’t try to save her.” They perfectly illustrated Dworkin’s future-oriented consent view of autonomy because their choices expressed their consistent priorities and the commitments that they expected themselves to value in the near and distant future.

Other potential donors explained their decisions in other ways. A few explained their decision by saying, “My family expects it of me.” Such statements raise questions about pressure and coercion and the limits of autonomy. Is pressure from others (e.g., family members) inherently different from situational pressure (e.g., the ship caught in the storm, a dying loved one), or the internal pressure of personal hopes or expectations (e.g., for survival, recognition, maintaining relationships within the family), and if so, how do any of these forces undermine agency or diminish moral responsibility? When I probed these statements for signs of coercion, the donors’ replies revealed that there was no outside pressure. In fact, the potential donors’ decisions amounted to reflectively endorsed commitments to act in ways that their families would expect them to behave. In Korsgaard’s terms, they chose to act in accordance with the rules that they and their families, and possibly society, embraces.

Many of the potential donors I interviewed articulated the same reason for donating verbatim. They said, “I want to be the kind of person who helps people.” Such proclamations expressed Berofsky’s view of autonomy as self-authorization, or self-realization, or self-expression. These donors viewed their actions in terms of the kind of self that they wanted to mold themselves into being.

One donor explained her choice to donate to a fellow parishioner who she did not know well by saying, “I am a Christian, like a good Samaritan I help my fellow man.” Her pronouncement fit perfectly with Velleman’s account of autonomous action as an expression of identity. This donor identified her choice as fitting with how she described herself and the story of her life as she tells it. Being a living donor is not alien to her, it is part of who she is in her own eyes.

Then there were the haunting assertions, “I have to. I couldn’t do anything else. I have no choice.” Again, the words themselves appear to express force, coercion, the opposite of autonomy. They do not fit with any of the accounts of autonomy that I have identified in the literature. These people, often parents contemplating donation to a child, seemed to be acting with freedom and authentically expressing their clear and definite priorities, yet their statements would tend to disqualify their actions as autonomous according to most models. To me, however, they expressed strong and unwavering commitment to a child as the parent’s highest priority. These parents had no choice and could not do anything else because nothing else was as important to them as saving their child.

In the end, the lesson that I learned from talking to living donors was that autonomy does not fit one narrow definition. Taken together the different living donor responses suggest that the standard philosophical approach of trying to describe what is essential to agency or what an autonomous decision is, does not account for the range of human experience. Faced with the variety of ways that donors characterize their decisions, theorists would either be pressed to stretch the envelope and redescribe personal experience in terms compatible with their favored view or deny that many, many choices that others would count as paradigmatically authentic or autonomous have that status. In light of this experience, autonomy appears to be a nest of concepts with a family resemblance, and voluntary choices may reflect different senses of autonomy . Donors who are in control of their choices, actions, and wills are autonomous. Those donors’ decisions are autonomous and worthy of respect. When medical standards for living donation are met, such donation decisions should be accepted.

In sum, autonomy is the ability to be a good ruler over oneself. For someone to be autonomous, she/he must have:

  • The ability to adopt values, principles, and goals

  • The ability to understand and appreciate the relevant facts of the situation

  • The ability to reach a conclusion that makes sense

  • The ability to abide by that conclusion

Someone who can do all of that is capable of acting voluntarily and can be held responsible for her/his actions.

The Responsibilities of a Living Donor Advocate

Understanding of the concept of autonomy and the elements that comprise voluntariness are critical tools for LDAs , but they are merely elements for enabling advocates to do their work. Assessing autonomy is, however, only one element of an LDA’s work. The LDA’s job is to help the donor. This involves two responsibilities related to autonomy . One is to assess the autonomy of the donor and the voluntariness of the donation decision . As I explained above, this assessment is necessary because unless the donation is voluntary, taking an organ from a living donor is unjustifiably causing harm.

The LDA’s other responsibility is to help living donors to reach decisions that are consistent with their values, goals, and priorities, and to make choices that are authentic and that fit with the donors’ own narratives. Both tasks require the advocate to enter the interview without a personal or institutional agenda, without preconceptions and assumptions, and with a nonjudgmental regard and a sincere commitment to helping the donor. Both tasks involve attentive listening and observation, as well as reflection on what is being said and not said. Two examples from my experience as an LDA will help to explain.

A Case of Assessing Voluntariness

SC, a 41-year-old Asian woman from China, was being evaluated as a liver donor for her husband. His illness had disabled him so that he could no longer work and she had to leave her job to care for him. As part of her donor evaluation, SC had already met with the transplant team’s medical doctors, surgeons, transplant coordinators, a psychiatrist, and a social worker. Each one had tried to explain the risks associated with living liver donation. In every conversation SC had signaled early in their explanation that the medical professional should stop explaining because she did not want to hear those things. These team members were concerned that SC’s decision would not be voluntary unless she was fully informed as to the risks involved.

In my interview with her, SC described her husband as being a good man. She also volunteered that they have one son who is an outstanding student attending one of the city’s elite high schools. She and her husband need money to cover his tuition costs at a good college. When I asked her to tell me about the risks associated with living liver donation, she became obviously upset and waved at me to stop my line of questioning. I did, but I asked her why she did not want to talk about what could happen. SC explained that if you talk about bad things, or even think about them, they would happen. Later in our conversation I asked her about others with whom she had discussed her decision. She mentioned that her husband wanted her to be a donor. She had also shared her decision with her own parents who did not want her to be a donor because they were worried about what might happen to her. She had not discussed the matter with her son, although he knew what was being contemplated.

At one point during the interview, SC asked me, “How often do the bad things happen?” I responded honestly, but I pointedly avoided naming the specific complications, and just spoke in terms of the very bad things, and the things that were bad, but not the worst. In the end, SC said that she had not yet decided what to do and that she was still thinking about donation.

By listening to what SC said, trying to understand her reasons, and discern what she was trying to convey, I concluded that SC was acting autonomously and that her decision would be voluntary. Even though she refused to articulate the specific risks involved in liver donation, what she had related convinced me that she was adequately informed to make the donation decision. She had told me about fearing that saying or thinking about the complications would cause them to happen, she had revealed her parents’ anxiety, and she had asked about the frequency of complications. Taken together, this communication told me that SC knew what could happen. Whether her refusal to name or hear the possible consequences named was a matter of culture or personal belief did not matter. What did matter was that SC was aware of what could happen and that her choice to be a donor reflected her own values. SC’s final statement that she was still deliberating about the donation decision also gave me confidence that her ultimate decision would be thoughtfully considered.

A Case of Helping a Donor Reach an Autonomous Decision

MV, a 36-year-old man, was being evaluated as a liver donor for his father. He had been largely estranged from his father since age 8, when his father abandoned him and his mother to start another family. Later his father abandoned the second family to start a third family. The father, who recently developed liver failure, now has a 5-year-old child with his new partner. He had contacted MV requesting him to be a living liver donor so that he live and be a good father to his newest child. He made all of the arrangements for MV to come into the transplant center and be evaluated as a donor.

MV last saw his father when he visited MV’s family about a year earlier. MV is married, and he has three young children. He explained his decision to donate saying, “I want to be a good person, the kind of person who helps people, and he’s my father.”

In my conversation with MV, he appeared to be well-informed about the risks involved in liver donation. He volunteered that he, his wife, and his mother have all been researching liver donation on the Internet. His wife and mother do not want him to donate, but they will support him in whatever decision he makes.

Although MV’s words sounded as if they reflected an autonomous decision, listening to the simplicity of his statements and the absence of emotion in his description of his father’s history and request suggested that further probing was in order. I asked MV whether, besides his father, there were others who he wanted to be good to and help. Then came his declarations of love for his wife and statements about how she was always there for him, in fact, waiting outside of my office. Then came the photos of his children and the expressions of pride in their accomplishments. Then came the photo of his eldest son on a dirt bike. And then MV said, “I spent more time with my son last weekend than my father spent with me in my entire life.”

In the end, I told MV that in being a good person and helping others he needs to consider all of those who will be affected by his decision. In effect, I gave MV permission to change his mind about donation and licensed him to consider the consequences of his decision more broadly. That permission allowed him to more fully explore his options and to choose a course that was consistent with his priorities and image of himself. He left my office thanking me and saying that he had a lot to consider.

Conclusion

Medical decisions can be much more serious than other decisions, they may need to be made very quickly, and their consequences can be enduring. Although in ordinary life we should generally presume that adults have autonomy and the capacity to decide for themselves, assessing patient decisional capacity is a medical responsibility whenever a lot is on the line. Typically, medical professionals assess the decisional capacity of patients who refuse critical medical interventions. In living donor transplantation , medical professionals also have to assess the autonomy of the living donor and the voluntariness of the donor’s choice.

The assessment of living donors by LDAs is an ethically challenging activity. It requires a deep understanding of voluntariness and autonomy to sort out when a donation decision should be accepted. It involves an attitude of nonjudgmental regard and requires setting aside preconceptions, assumptions, and agendas so that the advocate can listen to what is being said and take in what the donor is trying to convey. Without that understanding and perspective, donations may be accepted as voluntary when they are not. This is a serious moral hazard for transplant programs that perform living donor transplantation . Great care must be taken to see that it does not occur.