Autonomy, Agency, and Responsibility: Ethical Concerns for Living Donor Advocates



JENNIFER STEEL (ed.)Living Donor Advocacy2014An Evolving Role Within Transplantation10.1007/978-1-4614-9143-9_21
© Springer Science+Business Media New York 2014


21. Autonomy, Agency, and Responsibility: Ethical Concerns for Living Donor Advocates



Rosamond Rhodes 


(1)
Department of Medical Education, Icahn School of Medicine at Mount Sinai, One Gustave Levy Place Box 1076, 10029 New York, NY, USA

 



 

Rosamond Rhodes



Abstract

Autonomy and voluntariness are important concepts for use in the evaluation of living donors for organ transplantation. This chapter explains why these concepts are important and provides an account of what they entail. The chapter employs examples from living donor interviews to illustrate how the concepts may be identified in conversations with living donors. It goes on to explain other important ethical considerations for those with the responsibility of serving as living donor advocates and illustrates them with two cases.


Keywords
AutonomyVoluntarinessDecisional capacityNonjudgmental regardListeningResponsibility



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.

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Apr 11, 2017 | Posted by in NEPHROLOGY | Comments Off on Autonomy, Agency, and Responsibility: Ethical Concerns for Living Donor Advocates

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