The Organ Donor Experience: Good Samaritans and the Meaning of Altruismby Katrina A. Bramstedt, Rena Down
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With a current US need of over 115,000 organs one would think that Good Samaritan donors would be welcomed with open arms by transplant centers and society in general; however, this is often not the case. Tell someone that you have donated an organ to a stranger and the reaction is likely to be one of astonishment and disbelief. Some doctors even consider people who offer their organs to strangers crazy. Why would anyone do that? Who are these people so committed to helping others-strangers-that they would undergo surgery, discomfort, and disruption of their lives? This book profiles donors who have offered their organs to strangers and helps readers understand the meanings behind their donations. For the donor, altruism should always be the primary motivation, though other motivations often come into play. Often, there are also subconscious reasons for performing this great act of kindness. The Organ Donor Experience gives living anonymous organ donors of kidneys, liver lobes, and lung lobes the opportunity to tell their stories as they understand them, and for others to understand the motivations and the meaning of true altruism.
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The Organ Donor ExperienceGood Samaritans and the Meaning of Altruism
By Katrina A. Bramstedt Rena Down
ROWMAN & LITTLEFIELD PUBLISHERS, INC.Copyright © 2011 Rowman & Littlefield Publishers, Inc.
All right reserved.
Chapter OneEthics, Values, Motivations
Donation testimonies are often emotional and inspirational, but those features alone don't make a behavior "ethical." It is not enough that Good Samaritan organ donation be a safe and beneficent practice; it must also be ethically appropriate. Specifically, the motives of potential donors must be examined during their assessment process because there is the stipulation that organ donation, "the gift of life," is just that—a gift. This stipulation is based on the concept of altruism and originates from many sources, including the United Network for Organ Sharing and the American Society of Transplantation. This is further enunciated by regulations that forbid organ selling in the United States and most other countries. Altruism is not only a concept but also the premise of organ donation. Further, it seems its most vivid form is evidenced in the act of Good Samaritan donation.
Altruism, defined as the "disinterested and selfless concern for the well-being of others," is derived from the Italian altrui, "somebody else." What sets Good Samaritan donation apart from other forms of living organ donation is the fact that the recipient is an unknown individual—not a friend, relative, business partner, colleague, or associate. The concern and expressed behavior (donation) benefit someone with whom there is no emotional or genetic attachment. Further, both the concern and the expressed behavior are at extreme levels. The concern is so extreme that it moves the individual to undergo a personally unnecessary surgical procedure that is lifesaving for an unknown person.
Historically, the concept of being a Good Samaritan dates back to biblical times. A Jewish traveler was beaten, robbed, and left nearly dead on a road. First a priest and then a Levite came by, but neither provided help. A Samaritan came by and gave aid, including cleaning and binding his wounds, taking him to shelter, and paying for his accommodation. Samaritans and Jews generally despised each other because of complex religious differences, and their leaders taught that it was wrong to have any contact with each other. Because these two groups were not to associate, the story of the Good Samaritan is a profound example of one party reaching out to another in an act of selflessness. Circling back to the original roadside injury response, the term "Good Samaritan" continues to be a widely used phrase in the health care setting, most prominently in organ donation, as well as the naming of twenty-three U.S. hospitals. Journalists even use the term when reporting on stories of individuals coming to the aid of stranded or injured travelers, as do the legislatures that draft laws to protect these first responders.
THEORIES OF ALTRUISM
Use of the term "altruism" began in the 1800s when it was coined by the French philosopher and sociologist August Comte. To this day, there are numerous theories as to the origins of altruistic behavior. Some pose that if there is any benefit at all to the person providing the help, then the helping act is not really altruistic. Some pose that altruism has genetic tendencies. Because it is impossible to capture and explain all these theories, we have selected a few of the most prominent for exploration. In a subsequent chapter, we also put forth our own theory of altruism.
Some believe that altruistic motivations arise from an altruistic personality and that people who have this personality are more inclined to behave altruistically than those who do not have this personality. For these people, on their palate of possible ways to respond to a situation, there are more altruistic options available to them compared to people who don't have an altruistic personality. They see ways to help and are willing to make choices that put their altruistic values into action. How is it that these people have an altruistic personality? Social psychologists think their experiences early in life are contributing factors. According to sociologists Samuel and Pearl Oliner, an altruistic personality is a "relatively ensuring predisposition to act selflessly on behalf of others."
Some believe that there are universal ethical principles that spawn altruistic motivations. They believe that these ethical principles apply to everyone across all races, religions, political affiliations, genders, and creeds. This philosophical theory argues that a personal commitment to the universal ethical principles moves people to "do the right thing." Another theory of altruism argues that some people set within themselves a personal code of conduct and beliefs according to which they act. This has been referred to as "internalized personal values." Altruistic motivations arising from these personal internalized values can move the individual to act altruistically either as a form of "doing the right thing" or out of being concerned about the welfare of another person, depending on the nature of the personal belief system. Thus, the internalized personal values approach to altruism allows for a broad range of triggers for helping behavior. It potentially expands far beyond just "doing the right thing."
Philosopher Shaun Nichols has contrived a theory of altruism called the Concern Mechanism. This theory has three elements: distressful input, change in feeling or emotion, and the altruistic act. As an example, a man sees a building on fire and hears screams coming from the second floor. The flames, smoke, heat, and screams cause him to feel urgent paternal rescue and nurturing emotions, and he runs into the building, up the stairs, and grabs a small child who is floundering in a dark hallway. Was his behavior the "right thing to do"? Yes, but it was more than that. The origin of the behavior was a motivation that had a caring component. Embedded in the nurturing and rescuing emotions was a caring component that was aligned with the child's welfare. He recognized suffering and responded with a behavior that provided aid.
Altruism is thought to be related to the ethics of care (which is related to virtue ethics). Ethics of care is a philosophical approach often seen in the caring professions, such as medicine and nursing; thus, it is no surprise that some of the Good Samaritan donors we interviewed were currently employed in a caring profession or that, as a child, that type of employment was their goal. Within the ethics-of-care approach to decision making, the caring components of a situation are morally important and can be in tension with formal rules and policies. For an individual who lives by the ethics of care approach, tuning in to what other people are feeling and needing is morally critical. Rules and policies can complicate the plans of people whose platform is caring. It is no wonder that several of the Good Samaritan donors we interviewed were perplexed at why transplant centers viewed their intentions as "too good to be true" and "overcomplicated" the donor candidate evaluation process. For these donors, it seemed that people who didn't understand their altruistic ways threw numerous roadblocks in their path (e.g., multiple psychiatric assessments and waiting periods). As Ken, a Good Samaritan liver donor, told us, "There are some people who just like to do good things and it's just that simple."
ALTRUISM: BLACK, WHITE, OR GRAY?
For some, altruism can mean only one thing: all the benefits must go to the person getting the help. There is no gray zone that allows the giver to get any benefits, for this is seen as a contaminant to the altruistic motivation. Once altruism is contaminated, it is no longer altruism; rather, there is egoism at work. But does it have to be this way? Might there be indirect consequences to the giver that are benefits but that were not the original goal? Do these indirect consequences really harm or negate the altruistic motive? Can altruism and indirect positive consequences for the giver exist in philosophical and ethical harmony?
The expert on this topic is social psychologist C. Daniel Batson, and he has spent his life studying altruism, empathy, and prosocial behavior (e.g., providing comfort; sharing information, food, or other objects; and helping others achieve their goals). Dr. Batson makes numerous arguments supporting the fact that there can be multiple positive goals of a person's behavior. For example, if a person rendering aid to the needy gets some benefit along the way, this could be just an unintended consequence. It does not mean the motivation was not altruistic. His theory, the empathy-altruism hypothesis, makes room for the giver to also receive benefits in an indirect way. Consider this example: I am a pilot flying an airplane with four other people on board when I notice that both engines are on fire and that there is no time for an emergency landing. For unknown reasons, there are only four parachutes in the plane. I order my copilot to put on his parachute and to assist the three passengers to put on theirs. I then order my copilot and the three passengers to jump out of the plane. Not long after they exit the plane, it bursts into flames, and I am incinerated. My copilot and three passengers glide safely to the ground with their parachutes. Was my motive to save their lives altruistic? Maybe I really wanted the last parachute but was too shy or too guilt ridden to ask for it. I have to put the welfare of my passengers before my own, right? Maybe I was thinking it would be spectacular to go down in flames while my passengers survive and have all this commemorated in a movie that would tout me as a hero. Maybe I knew it would make me feel good to give all the parachutes to the other people so they could be saved and return to their families. Maybe I was fearless about death and really didn't care at all that I didn't get a parachute (or that I gave them all to other people) because I believed I would go to heaven if I died in the plane crash.
While altruism has the ultimate goal of increasing another person's welfare and egoism has the ultimate goal of increasing one's own welfare, there is ethical room for unintended benefits to one's own welfare. Some might consider altruism, which includes the unintended benefits to one's own welfare, a special form of egoism because these unintended benefits emerge from within the helper/giver. They are not benefits bestowed from some external source, such as the person who received the help. In the airplane example above, the internal benefits could include knowing I did "the right thing," feeling good about giving away the parachutes, and not feeling guilty because I didn't take one of the parachutes. With the empathy-altruism hypothesis, the empathetic concern felt for a person in need produces an altruistic motivation to attend to the need. While doing so, however, there are three other possible results. In addition to the needy person getting aid, the helper may experience some benefits: 1) reduction of personal distress (the feelings that motivated the helper to respond to the need), 2) avoiding feeling guilty for not helping or avoiding having others think negatively because help was not given, and 3) gain of personal rewards, such as praise, recognition, and pride. These three items were not the ultimate goal of the helper; rather, the ultimate goal was to improve the welfare of the other person. Empathetic concern produces altruistic motivations, and these are not ethically marred by the unintended positive consequences to the helper.
ALTRUISM AND LIVING ORGAN DONATION
While altruism is ideally foundational to the concept of Good Samaritan donation, many transplant centers are frightened. One of the reasons for their fear is that many take a "black-and-white" approach to altruism. If they see gray ("benefits to the donor"), they have ethical distress that the donation might not be altruistically motivated (pure). As shown, not all indirect benefits to a helper mar the altruistic nature of the gift. In the setting of living organ donation, careful psychological screening of candidates is needed to ensure that potential donors are not donating to attempt to heal their own personal problems (e.g., to make amends for past misdeeds or to attempt to earn the respect of a relative). If that is their ultimate goal, they are not ethically suitable living donor candidates. If living organ donation is a form of personal psychological exploration, that too is not the appropriate ultimate goal. The ultimate goal must be to improve the recipient's welfare.
Another fear that transplant centers often have is the belief that a person who gives a living organ to a stranger "must be crazy." Organ vending is another anxiety among transplant center personnel. No transplant center wants to be caught in a scandal involving donors selling their organs (why would they give their organs to strangers with "no strings attached"?) They also don't want the headache and bad press of dealing with donors with psychological problems, and they have concerns about the ability of these individuals to give informed consent (not to mention concerns about donor motivations). These parallel fears have resulted in many U.S. transplant centers not permitting Good Samaritan donation. Further, some countries have banned the practice entirely (e.g., Egypt and France). California is the first U.S. state to have a living donor registry. Signed into law in 2010, the regulation creates the California Living Donor Registry to formally facilitate Good Samaritan donation. This registry allows individuals to sign up, professing their desire to be a living kidney donor. In the future, the registry intends to expand to include other living donations (e.g., liver).
When Good Samaritan organ donation emerged in the United States in the 1960s, researchers were aware of the concerns and sought to systematically explore them as well as the motivations of these donors. The first such study was published in 1971 and included data from nine kidney donors. As part of this study, transplant center teams were asked about their opinion of "living, unrelated" donors. Of the fifty-four transplant centers polled, only eleven were allowing this type of donation. The prevailing opinion was that of distrust of their motivations as well as their "mental health." Other feelings expressed were that these donors are "influenced by subliminal forces" and are "screwballs." Donor motivations were felt to be based on "guilt," "atonement," and "a perverted sense of goodness." Exploration of the donor data found that in only one case was the motivation described as "selfish." Specifically, the donor (a former nurse) decided to donate as an attempt to "reconstruct [her] broken life." She responded to a newspaper plea for donation to a stranger. As she told the researchers, "[Donation was the] only good thing I ever did. I'm better for it.... It makes me forget the bad things of my past." This donor had a criminal history that included jail time as well as prior drug addiction and social isolation. While donation initially made her feel good, when the recipient died two months after transplant, the donor emotionally decompensated and was temporarily admitted to a state psychiatric facility. After discharge, she reported that she felt she had benefited from the aftermath and that the donation was a "wholesome" experience. In retrospect, the researchers pose that this individual would not be accepted as a donor under today's standards because of "antisocial character disorder."
For the other eight donors, several professed altruistic motivations that focused on the concept of "giving another life." For those who responded to media pleas for donations, the "overwhelming reason" was to help someone in distress or to give them life. More than half the candidates who were screened as potential donors to these patients had a childhood that was disrupted and destabilized, enabling them to identify with the recipient's life situation. All nine donors experienced hospitalizations and follow-up periods that were without serious medical complications. These researchers concluded, "without hesitation," that these donations should be allowed to occur as a formal practice at transplant centers under strict protocols for candidate screening.
Excerpted from The Organ Donor Experience by Katrina A. Bramstedt Rena Down Copyright © 2011 by Rowman & Littlefield Publishers, Inc.. Excerpted by permission of ROWMAN & LITTLEFIELD PUBLISHERS, INC.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
Dr. Katrina A. Bramstedt is a noted medical ethicist associated with California Transplant Donor Network in Oakland, California. She also has a private practice in Marin County where she has performed over 800 ethics consultations and published over 75 articles in medical and bioethics journals. She lectures nationally and internationally and has made numerous appearances on television and radio discussing transplantation and donation. Rena Down is an Emmy-award winning writer for theatre and television whose credits include The People vs. Inez Garcia" which she wrote and directed for PBS and Susan Griffin's Voices (Emmy award) which she directed for PBS. She was Story Editor and Producer of Dallas, Falcon Crest, Nurse, and has written five movies for television. She teaches writing at The New School University and is Adjunct Professor at Fordham University. She is the recipient of a kidney from a stranger.
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