The Journey of Louis the Liver
Hi, my name is Louis and I’m a liver. In this blog, I’ll take you along my journey (my social life) from one human body to another and provide you with some interesting insights/details. On the one hand, I would like to talk about organ transplantation in general and on the other hand, about the moral and ethical conflicts that affect the persons involved in the donation and transplantation process. The following figure (fig. 1) shows the rough journey we’ll take. We will start with the organ donor and his thoughts, including the problematic situation of families who are not aware of the will of their deceased relative and therefore must make a decision regarding the donation of the organs. In a second step, we will look at the physicians and medical facilities that are involved in the process, to get an idea about their ethical conflicts. And thirdly, we analyse the feelings of organ recipients after a transplantation and understand their life with a new organ.
Figure 1 The process of an organ transplantation (own illustration)
I will allow myself to make a small remark before we start our journey. The topic of organ donation is subjective and allows for various viewpoints and standings which are neither right nor wrong. In the following, I will introduce you to the main ideas, concepts and ethical questions, which can also be found within the literature and which have been quantified through research. However, please bear in mind that this is not an extensive list of arguments as the topic is highly personal. I got the chance to talk to other actors involved within the organ transplantation process, as Frank Neumann, who works as a hospital chaplain in the University Hospital Münster, Germany. Although, I am more than glad for their insights on the topic, we should view them carefully as they also reflect personal opinions.
As I have mentioned I would like to introduce you to my social life as an organ. Now you might ask yourself how can an organ have a social life, as even some people don’t really have a functioning social life. HA HA HA. “The Social Life of Things” is a concept that was introduced by the anthropologist Arjun Appadurai. He argues that things can move into and out of their commodity status during their lifetime (Appadurai, 1988). Therefore, a liver, like myself, that is usually regarded as being a vital part of a human body, can become a commodity once I am leaving this body. These processes describe my social life.
To begin with, I want to introduce you to the person I have been spending my entire life with, as a liver. His name is Peter, he is 54 years old and lives near Hamburg in the north of Germany. Fortunately, Peter never had a problem with alcohol besides some, well let’s call them “incidents” during his time as a teenager, when he had not only one but probably ten beers too much and I was struggling to detoxify all the booze he downed. Nowadays, Peter is a decent family guy and when he’s not busy at work he spends time with his sons or enjoys a motorbike tour with some of his colleagues.
Becoming an Organ Donor
A few months ago, Leon (his oldest son) asked him whether he had an organ donor card. They were dealing with this topic in school and he asked what would happen to the organs of his father if he died on one of those dangerous motorbike trips. This thought had never crossed Peter’s mind but he admitted that it was an important question. Therefore, Peter spoke to his wife and his children and wanted to know, whether they were in favour or against organ donation. Personally, he concluded that it was the right move to donate his organs because of the shortage of organs on the one hand and the responsibility he felt for the persons on the waiting list on the other hand. Nevertheless, Peter also took into consideration the opinion of his family members because they would have to see him at his funeral and if they couldn’t deal with the fact that his organs were removed, he would decide against a donation. However, organ donation cannot only be seen as a “gift of life”, but instead also as a “sacrifice” for the donors’ family (Sque, Payne & Clark, 2006). In the end, Peter’s family agreed that the possibility of saving a life is more important than anything and in the end, Peter got himself and his wife an organ donor card and put it into his purse.
Figure 2 German Organ Donor Card
Just to make this clear, it means the person I “worked” for my entire life decided to give away my services to another human whom we both don’t know. It is quite rude to make this kind of decision over my fate without even asking me for permission! On the other hand, I was glad to know that in the invidious case of Peter’s death I would have the opportunity to continue my services in another human body.
But joking aside, if people come to the decision not to donate their organs, it should not be regarded as egoistic behaviour or ruthlessness, because no human in this world is obligated or has the duty to donate his organs for someone else (Eibach, 2011, p. 10). Even the Christian commandment for love must not be interpreted as a commandment to donate your organs (Neumann, 2013, 7f.).
Nevertheless, it is pleasing that Peter and his wife made their decision. It doesn’t matter whether you decide for it or against it, but at least come to a decision at some point in your life, because you can still change it as often as you want. Not making the decision at all will get your whole family in trouble (Neumann, 2013, 7f.). As mentioned in Eibach (2011, p. 8), the relatives are often suddenly confronted with the death of a family member, which makes it even harder for them to come to a decision in this dramatic situation. Some may ask themselves: should they even be asked whether the organs should be removed or not? Eibach says, it also sounds quite reasonable to me, that not asking them is not an option. He also states that an organ donation prevents the terminal care or the “experience” of the natural death and therefore the family members are not able to bid farewell to their relative.
“Nothing that I can see, hear, feel indicates that the brain cannot process any signals anymore” (Neumann, 2013, p.4).
Subsequently, removing the organs against the will of the relatives, if the deceased hasn’t stated his decision, can’t be justified (Eibach, 2011, p. 8). As you can see, there are various ehtical conflicts emerging from the simple fact that many of us still haven’t made a clear decision yet whether they want to donate their organs in case of brain death.
Furthermore, Neumann (2013, p.5) adds to the discussion that the death of a persons is a process, which is taking place. The diagnosis braindead only marks one point within this process, from which on the return to life is not possible anymore. This definition can be questioned, but it is necessary for the organ transplantation process.
Bringing life to another Human Being
Maybe you have already seen it coming, but a few years after the decision to donate his organs, Peter went on another motorbike trip and was involved in a fatal accident. The ambulance brought him as fast as possible to the hospital but the physicians were only able to announce his brain death. Peter’s family was informed and they rushed to a hospital to see him once again while he was still held alive with the aid of machines. Despite the disaster they felt relieved that it was indicated clearly on his donor card that he would like to donate his organs. But what happened next?
While Peter left me and the doctors preserved his basic body functions such as my very own capacity by “monitoring physiologic values like oxygen, hormone, and electrolyte levels in the blood” (Todd, Jerome, & Jarquin-Valdivia, 2007, p. 238 ), the hospital notified the organsiation Eurotransplant which is responsible for the allocation of organs within 8 countries in Europe: Austria, Belgium, Croatia, Germany, Hungary, the Netherlands, Luxembourg and Slovenia. The whole Eurotansplant community has a about 135,5 million inhabitants (Eurotransplant, 2017, p. 1). But not all the countires have the same legal system concering organ donation. As shown by the example of Peter in Germany, the system is called „informed consent“ whereby relatives give permission at the time of death, usually in the knowledge that the potential donor had expressed a wish to become a donor like Peter did (Eurotransplant, n.d.). In Austria on the other hand the sytsem is called „presumed consent“. This means that organ donation is automatically considered in patients diagnosed brain dead, unless they have specifically registered their wish not to donate (Rithalia, McDaid, Suekarran, Myers, & Sowden, 2009, pp. 1-2).
Figure 3 Eurotransplant Information Video
Personally, I think Eurotransplant is a big opportunity. First of all, they reduce the loss of organs because with more than 15.000 people on their waiting lists, it is almost in every case possible to find a suitable recipient for a healthy donor organ like me (Eurotransplant, 2017). Futhermore, if the physicians of a recipient are allowed to choose from more than one organ, the donor’s tissue characteristics will fit better and therefore the possibility that the organ rejects the new body is reduced dramatically. It is scientifically proven that the antigenes of the donor’s as well as of the recipient’s tissue have to be as similar as possible in order to prevent an organ rejection from happening (“Transplant Rejection”, n.d.). In addition, Eurotransplant provides a higher chance for people with special requirements. For instance, people that are highly immunized or have a rare blood group. With the help of Eurotransplant, these people have a higher chance to find the most suitable donor.
Unfortunately, a far-reaching system like Eurotranspant will always include people, who don’t play by the rules. Maybe you have already heard about the manipulations of the waiting list that occured a few years ago in Germany (Zeit Online, 2013). I am a little bit embarrassed that something like this could happen in a developed country but nevertheless, I will tell you the story because some of my friends were involved. In 2012, a few doctors in Germany manipulated the organ recipient waitung list. They used tricks like the concealment of medical problems like metasthases, refused medical treatment (like dialysis) for patients to make the data seem to be worse than it actually was or they just faked the patient’s data (Metz & Hoppe, 2013, pp. 113-116). Sadly, they were quite creative in finding new ways to push their patient up the waiting list but it only worked until some people started to talk. I am not only talking about one hospital but seven hospitals all over Germany! I’ve been asking myself this one question over and over: why did they do it? Money, prestige or maybe altruism? I came to the conclusion that it had to be mixture between those factors. In some hospitals, physicians receive their salary according to their work performance. And as you can already imagine, they get a lot of money for an organ transplantation. Furthermore, transplanting organs is seen as the supreme discipline in medicine. Therefore, prestige could have been a motivating factor too (Küng, 2017). Last but not the least, the system in Germany is shaped by the “sickest first priciple”, which means that just the health of a person decides whether he/she gets a higher score on the waiting list (Bobbert & Ganten, 2013, pp. 34-39). After the scandal physicians came to the conclusion that the previous system was unfair. Young people will always have a lower score although they have a higher life expectancy in most cases. After the investigation of the scandal a domino effect took place and the government busted more and more hospitals, which were involved in the manipulation of patient data to achieve higher scores on the waiting list (Küng, 2017).
As a consequence, the organ donation rate decreased rapidly because people did not trust the system anymore (Eurotransplant, 2016; see Figure 4). To prevent similar fraud cases in the future, the German government set up several control activities. First of all, the manipulation of the waiting list was made accusable. You may ask yourself, why nobody had the idea earlier so a scandal of this momentousness could have been prevented. However, it is really hard to prove that the manipulation of data led to the death of people. And that is the reason why the involved physicians could not be held accountable. Secondly, they increased the number of on side controls and spot tests. Thirdly, they forced every relevant hospital to appoint an independent physician to the allocation/donation process (Zeit Online, 2013).
I can’t decide where I go
As you may have realised, this topic bothers me a lot. Unfortunately, I talked way to much about the system but you probably still don’t know enough about the transplantation proccedure. So how does the whole organ transplantion process work? What happens after Peter was diagnosed brain dead? First of all, Eurotransplant gets all the data about Peter, including blood type, weight and age. They compare Peter’s data with all the patients listed on the waiting list and include the urgency of need of the recipient into their consideration and calculate in my case (for livers) the so called “MELD score” (Model for End-Stage Liver Disease). Each patient receives a MELD score between 6 and 40. The higher the score, the higher the urgency for a transplantion (Wiesner et. al., 2003, pp. 91-93). An essential value used to identify the MELD is the amount of Bilirubin in the blood, which depends on the effectiveness regarding the functioning of the liver (“MELD”, n.d.). In my case, after Peter’s death Eurotransplant got notified and I was allocated to Sue. She is a 50 years old woman, weighs 70 kilogramm and has a MELD score of 34. The physicians in Hamburg removed me from Peter’s body and put me in a box filled with ice to ensure my survival. Subsequently, they flew me to Amsterdam, where Sue was already prepared for the transplantation in the hospital. With the help of Sue’s physicians, Peter’s inserted me in Sue’s body. All this had to happen in a short time because organs like me can only survive one day without being part of the functional body system.
However, this process does not remain undiscussed. While there is an agreement that there has to be a prioritization between the people who are in need of a new organ, there is a constant debate on how to prioritize and rank the possible organ recipients. Bobbert and Ganten (2013) offer two solutions to the problem: select by urgency of need or by prospect of succss?! There is no answer to this question. One person will always win and the other recipient will loose. Should the sickest person get a chance, or is he / she already to sick to have a real chance of survival? Is it not more justified that I am given to someone with a higher life expectancy? Where is the line to be to sick or old in order to receive a donated organ? Therefore, Bobbert and Ganten suggest that the decision should be passed on to democratic decision making.
My second life
The last part of our journey is Sue’s new life. I’m sure she and probably every other recipient in this world asked themselves questions like: who was the person I received my liver from? I would be interested in their answer to the question: How does it feel to have something inside you that does not belong to you in the first place? How does it feel that somebody had to die so that you can live? The answer undoubtedly depends from person to person. Sue said she feels more independent and more active with her new liver. But on the other hand, she stated that she does not feel completely healthy due to the tiring effects of the various pills that she will have to swallow for the rest of her life (Patricia, 2006). Without question the situation to carry someone else’s organ within you is emotionally stressful. There is a whole range of feelings recipients associate with the organ: joy and sorrow, gratitude and indebtedness, guilt and inequity or only some examples (Sanner, 2003). It may sound surprising to you, but Sue actually did not want to know too much about her donor. This way she can imagine him herself and can deny, avoid or suppress any anxiety she may associate with her donor (Sanner, 2003). I know this sounds strange, but think about it for a few seconds and try to wrap your head around it. Sue’s mind will take a while to get used to me and accept me completely. And this is where we are at the end of our journey. It was a long way from Peter to Sue in a very short period of time.
Let me sum up some of the most important points mentioned above. Overall the organ tranpslantation process is complex and involves many different actors. Because of its complexity, as well as its impact on people’s lives, the market is regulated to a high extend. However, the regulations confront the society with several challenges. In order to not allocate organs randomly, there has to be prioritization between the people in need. But which criteria should lay the basis for this prioritization? Is the urgency of need most important or should the prospect of success be considered as well? Those ethical questions and conflicts have no clear answer. The answer depends on values in life and often religious beliefes. Notwithstanding all those difficulties and the need to respect the personal decisions and values, the society as a whole needs to decide on a fair allocation system. Only a system backed by the society can function efficiently. Seeing the current decrease in organ donations, someone might wonder if this is still the case.
Hopefully, you enjoyed the insights I tried to provide you with and know a little bit more about organ transplantation and the ethical questions that arise along this process.
Louis the Liver