N A R R A T I V E M A T T E R S
by David Steinberg
One day a patient of ours with end-stage kidney failure asked, if he found a stranger willing to give him a kidney, would our surgeons retrieve and transplant the organ? The man posing the question required dialysis and could anticipate a wait of several years before receiving a kidney transplant. The question was then presented by our kidney transplant team to the medical ethics group that I head at a hospital in a small town thirteen miles northwest of Boston.
The patient’s request was unusual; it was made after the patient read about a thirty-six-year-old woman from Texas who through the Internet found a stranger willing to give her a kidney. Would honoring this request be morally appropriate, the transplant team wanted to know? Thus began my own search into the implications of kidney donation by altruistic strangers.
I found Susan by chance when searching for “altruistic donors” on Google. Her note said that she wanted to give one of her kidneys free to someone who needed one. I wrote to her because I was curious about her motives. It seemed bizarre to me to submit to the risks and discomforts of surgery in order to help a total stranger. And, as a medical ethicist, I knew that not every altruistic act is necessarily a “good” act. Donating a kidney is not risk-free. If a donor dies, the morality of such a donation could be called into doubt.
Through e-mail conversations with Susan, I probed and questioned to unearth the personality or cognitive defect that I assumed would explain her reckless altruism. I ended up, however, wondering whether, of the two of us, she was the more rational. Part of our e-mail dialogue, edited for clarity, went like this.
Me: “I am interested in learning why someone would donate a kidney to a stranger.”
Susan: “I believe I should try to help people. This seems to be a perfect opportunity to help someone in a big way with minimal inconvenience to myself. You may think ‘minimal’ is a strange word to use regarding a kidney transplant. However, I understand the laparoscopic surgery is very good and I should recover in about a month. Do you need a kidney?”
Me: “No, I don’t. Are you aware that there is a small but real possibility of death—perhaps one in 2,500—if you donate your kidney?” Susan: “When I first thought about giving a kidney I was a bit freaked out thinking about the worst-case scenario—death or rejection by the other person of my kidney. I guess that’s where my faith in God comes into it. I believe God wants me to use my life to help other people, and the rewards will be a much deeper happiness and a sense of real fulfillment in my life. Many people are willing to KILL for what they believe in; why not allow people who are willing to take personal risks do what they believe in to SAVE a life? Anyway, a one in 2,500 chance of death is a pretty slim one. Part of the skepticism people feel about my decision is that the subject of live organ transplants is relatively new and still controversial. People need time to think through the issues and get over their initial reaction, which is usually based on ignorance and fear.”
At first my conversations with Susan were impersonal; gradually I learned a few things about her. At the end of one note she signed her full name, Susan Gianstefani. She told me that she was an Australian citizen living in London with her husband and that she stayed at home to tutor her seven-year-old son.
Unusual But Firm Beliefs
Susan’s altruism is rare; donation by altruistic strangers makes up less than 1 percent of live kidney donations in the United States. Most live organ transplants take place between people who have an established relationship. Live kidney donations have become more common than those from deceased donors and produce better outcomes. But they are questionable because they place healthy people at risk, a situation that is incompatible with medicine’s traditional goals. I persisted in questioning Susan’s motives.
Me: “Most people who believe in God do not donate a kidney to a stranger. Are there experiences in your life that explain why you have decided to do this? Are you acting out of guilt?”
Susan: “Just because ‘most’ people don’t do it, isn’t a reason to ban the minority who want to donate to a stranger. Of course there are experiences that have influenced my decision to donate. I have given blood for many years, so the idea of giving something from my body is not new to me. I am on the donor list for bone marrow transplants. I have learned that showing love to others makes me happy as well as the person I am loving! I feel sad I only have one spare kidney! It’s true that I feel guilty about some things. However, I am not trying to ‘pay back’ God because of guilt. I believe God has forgiven me for the bad things I have done.”
Me: “Did you consider that if anything went wrong, your seven-year-old son would not have a mother?”
Susan: “Yes, but that shouldn’t make me the sort of person who locks herself away fearing something bad will happen. People take all sorts of risks as parents. What about police and firemen? Should they be told they shouldn’t do their jobs because if something happens to them their children will have one less parent? They choose to take a risk for the sake of the good that they are achieving through their dangerous occupations. If I am willing to take some risks to help others, overall my life will be a lot better than a pathetic existence of fear and self-preservation. Also, if I don’t donate my kidney to someone, maybe their children will lose a parent or have a parent living on dialysis. The best I can do for my son as a mother is give him a good example. If I die, he will still have a loving, dedicated father, which is more than a lot of other children have.”
Skirting The Law To Do Good
Susan held some surprises, revealed when I asked her if there was anything else she wanted me to know. “So far, I have two potential recipients,” she wrote. “One, George, is from Colorado, and the other is a woman from Scotland. I chose them because we share the same blood group and they were the first to contact me. This week I will be sending blood samples to the USA to confirm that I match with George. It will be interesting to see what happens when I arrive at the hospital with instructions on obtaining blood samples. You see, it is illegal in the UK for me to donate my kidney without going through a regulatory body to determine I am doing it for a ‘close friend.’”
Surprise number one—Susan was performing an illegal act. In the United Kingdom, organ donation to someone other than one of a specified category of genetic relatives requires approval of the Unrelated Live Transplant Regulatory Authority (ULTRA). ULTRA requires information about the relationship between donor and recipient and documentary evidence, such as a copy of a marriage certificate or family photographs, substantiating the relationship. (Organ donation by strangers is also prohibited in other countries, including Germany and India.) Susan’s kidney donation to a stranger was going to violate British law. “Donating my kidney to someone over the Internet is not the best way to do it,” Susan wrote. “I believe the best way is to go through a hospital; however, because of the laws here I cannot use those channels.”
Susan’s second surprise came in an e-mail from Jon Ronson, a documentary filmmaker in London. Susan had given me permission to use our e-mail conversations at a Harvard Medical School ethics conference where I planned to tell her story and stimulate discussion of organ donation by altruistic strangers. Ronson wanted to film the conference because he was making a documentary of Susan’s illegal (in her country) attempt to become an altruistic kidney donor to a stranger.
I sensed that I had at last uncovered the elusive flaw that explained Susan’ s motivation. As tactfully as possible, I asked if she wasn’t simply a crusader looking for publicity. “I should have mentioned Jon’s interest earlier, but I didn’t want media interest to cloud the issues,” she responded. “I expect some people will doubt my intentions are genuine. The publicity, although it will make more people aware of the issues, will also be a convenient way to disregard the real motivation of someone altruistically donating an organ out of love. It is human nature to be skeptical. I hope some people will appreciate there aren’t many people who would give a kidney to a stranger simply to get publicity. There isn’t much I can do to prove my true motives. However, since Jon Ronson is going to make this documentary, I feel excited about inspiring others to donate their kidneys altruistically.”
At this point I realized that Susan was genuine. I conceded that human brains are wired differently and that for some of us, donating an organ to a stranger seems an appropriate and natural response.
Susan waited a long time before telling me about the Jesus Christians. “I am also part of a small group of believers who actively try to get people thinking about doing things for love rather than for selfish reasons,” she wrote. “Quite a few of us have decided to donate our kidneys to strangers for free, because this fits what the Bible teaches about healing the sick, those who have two giving to those who have none, etc. Two of us have donated through a hospital already and are recovering well. We have been living and working as a community for over twenty years. We are called Jesus Christians. You can check our Web site, www.jesuschristians.com. We are a ‘church’ in the sense that we are a group of believers in Jesus and his teachings. The worldwide population of the group is only about twenty-five people; more than half are here in London, and the others are in Texas, India, and Australia. Almost half of us are interested in donating a kidney to a stranger; we have kept our kidney donations secret from the public in general (with reference to our community) to avoid the anticipated media frenzy we think may accompany such an action by a group of people.”
Was Susan an independent thinker who was a member of a like-minded group, or was she an intelligent but brain-washed member of a cult? “The fact that you belong to a group will serve as a red flag and make people wonder whether you have been subtly and subconsciously manipulated by the group,” I wrote. “I suppose an analogy might be the hundreds of people who committed suicide in Jonestown.”
She got angry. “I felt offended and disappointed by the comments in your last letter Susan wrote. “The fact that you are a ‘doctor’ made me want to give you more time and respect. However, given that you probably would not even consider donating a kidney to a stranger, I can’t help feeling you should respect the group I belong to. Yet it seems the opposite is true. You and other doctors have set yourselves up as judges of our motives with the possible intention of preventing hospitals from accepting the gift of our kidneys.”
I didn’t want our conversation to end; I apologized to Susan and later asked again, “Were you exposed to any group pressure to donate?” “No,” she answered. “We are all very aware that this is a decision that cannot and should not be made lightly, and if anyone donates under any sort of pressure from others in the community, that would be wrong.”
Susan’s reasons for donating a kidney were rational and consistent with her religious beliefs; she could anticipate happiness as a reward for her altruism. Despite my reservation that we should always feel some discomfort at removing a kidney from a healthy person, my e-mail discussion with Susan convinced me that in carefully selected cases, using guidelines that adequately protect donors, it is morally appropriate for some people to donate a kidney to someone they don’t know. My conversations with Susan also made me realize that altruistic donors’ highly developed sense of solidarity with humankind should prod the rest of us. We should be embarrassed that the altruistic stranger suffers and accepts risk to donate an organ, while most of us have not even filled out an organ donor card to permit retrieval of our organs after we die.
A Better System
More than 50,000 people in the united states are waiting for a kidney. In 2001, 2,834 people died while on the waiting list. Our current system has failed to meet demand. We cannot legislate altruism, and there are few Susans in the world. We can, however, promote enlightened self-interest.
When we are young and healthy, and it is unknown who will need a kidney and who will die and be eligible to donate one, we should be given the opportunity to opt in as “organ donors.” An organ donor whose fate is to need a kidney would receive preferential treatment. This system would produce more organ donors because it would become advantageous to be an organ donor. Healthy people who already have signed organ donor cards voluntarily under the present system would be permitted to join the new pool.
The system would at first apply only to donations from deceased donors, to avoid practical problems such as live donors who change their minds after reaping the benefits of being in the pool. This approach would bring the supply of kidneys from deceased donors closer to demand while also eliminating the unfairness of the organ taker–organ giver divide. People needing organs other than kidneys could also benefit because deceased donors can donate all salvageable organs. Government support of a central registry and legislation to prohibit reneging by the next of kin would be needed. Countries such as Belgium and Spain have adopted a similar approach using a doctrine of “presumed consent” that permits organ retrieval unless an individual has specifically opted out.
Susan—one of those rare people who do not need the spur of enlightened self-interest to donate an organ—called me when she arrived in the United States. It was the first time we had spoken. I asked her if she was nervous about her operation. She said she was excited. I spoke with her again after her surgery at the University of Wisconsin. All went well. She met and liked George, the recipient of her kidney, whom she affectionately described as a “character.” Despite some discomfort, she was in good spirits.
Susan had changed my mind about altruistic kidney donations. To my great surprise, through my acquaintance with her I could respond in the affirmative to the transplant team’s query about the morality of a kidney transplant from an appropriate altruistic stranger.
This work was supported by a grant from the Karp Family Foundation in memory of Harold Karp.
David Steinberg, firstname.lastname@example.org, is director of the Section of Medical Ethics at the Lahey Clinic Medical Center in Burlington, Massachusetts. He is editor of the Lahey Clinic Medical Ethics Newsletter and an assistant clinical professor of medicine at Harvard Medical School.
©2003 Project HOPE–The People-to-People Health Foundation, Inc.