The journey of Louis the Liver

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Figure 1: Louis the Liver (istockphoto, 2017).

Dear reader,

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. On the one hand, I´d 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 transplantation process. The following figure (fig. 2) shows the rough journey we’ll take. We´ll start with the organ donor and his thoughts, including the problematic situation of families. In a second step, we´ll look at the physicians and medical facilities that are involved in the process, to get an idea about their ethical conflicts. Thirdly we focus on the organ recipient and the allocation process within Eurotransplant. In a forth step, we analyze the feelings of organ recipients after a transplantation and understand their life with a new organ.

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Figure 2: The process of organ donation (Own illustration).

In the following, I´ll introduce you to the main ideas, concepts and ethical questions, which can also be found in the literature and which have been quantified through research. The key texts on which this discussion is based are texts written by Appadurai; Boppert & Ganten; Eibach; Sanner, Sque & Payne and Clark. They each illustrate a unique viewpoint of the transplantation and highlight different aspects.

I got the chance to talk to other actors involved in the organ transplantation process, such as Pasteur Frank Neumann, who works as a hospital chaplain at the University Hospital Münster in Germany and Prof. Dr. Dr. med. habil. Dr. phil. Dr. theol. h. c. Eckhard Nagel, Managing Director of the Institut für Medizinmanagement und Gesundheitswissenschaften at the University of Bayreuth.

As I´ve mentioned I´d 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´m leaving this body. These processes describe my social life.

To begin with, I want to introduce you to the person I´ve been spending my entire life with. His name is Peter. Peter is 54 years old and lives near Hamburg in Germany. He enjoys spending time with his sons or going on a motorbike tour with some of his colleagues.


Becoming an Organ Donor

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Figure 3: Station 1 of the process of organ donation (Own illustration).

A few months ago, Leon (his son) asked him whether he had an organ donor card. This thought had never crossed Peter’s mind but he admitted that it was an important question. Therefore, Peter spoke to his wife and children and wanted to know whether they were in favour or against organ donation. After taking their opinions into consideration, he personally concluded that it’s the right move to save someone else’s life after he dies. However, organ donation can´t only be seen as a “gift of life”. Instead it’s also a “sacrifice” for the donors’ family (Sque, Payne & Clark, 2006). Peter ordered an organ donor card online and filled it in.

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Figure 4: German Organ Donor Card (Organspende, 2017).

Just to clarify, the person I “worked” for my entire life decided to give away my services to another human being whom we both didn´t know. It´s quite rude to make such a decision over my fate without even asking me for permission! I was glad to know though that in the unfortunate event of Peter’s death I´d 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 shouldn’t be regarded as egoistic behavior or ruthlessness. No human being in this world is obligated to donate his organs (Eibach, 2011, p. 10). Even the Christian commandment for love mustn’t necessarily be interpreted as a commandment to donate one’s organs (Neumann, 2013, 7f.). Life and the human body can also be seen as a gift by god, which is taken back by him. Although Eibach (2011) argues that there is no obligation to donate one’s organs, I personally don´t necessarily agree with him completely. While being a functioning organ in Peter’s body, I´ve heard several discussions on becoming an organ donor. People who decided against becoming a donor had to justify their decision. Those who concluded “pro” organ donation didn´t have to. I think there´s an unspoken moral obligation emerging from social pressure.

Nevertheless, it´s pleasing that Peter made his decision. It doesn’t matter whether you decide pro or contra, but deciding at some point is of utmost importance. Not making the decision at all will put your relatives in a terrible situation when they’re asked to decide for you (Neumann, 2013, p. 2). As mentioned in Eibach (2011, p. 8), the relatives are often suddenly confronted with a family member’s death. This dramatic situation causes an even harder decision making. Some may ask themselves if they should even be considered in this question? Eibach states that not asking them is not an option. I can fully relate to that. He also argues that an organ donation prevents terminal care or the “experience” of the natural death. That means family members aren´t able to bid farewell to their relative.

Subsequently, removing the organs against the relatives’ will can’t be justified if the deceased hasn’t stated his or her decision (Eibach, 2011, p. 8). As you can see, there are various ethical conflicts emerging from the simple fact that many of us still haven’t made a clear decision.

Furthermore, Neumann (2013, p.5) adds to the discussion that the death of a person is a process. Being diagnosed braindead marks the point within this process from which a return to life isn´t possible anymore. I understand that this definition can be questioned, but it´s necessary to determine the death from a medical point of view in order to be able to take out organs at all.


Bringing life to another human being

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Figure 5: Station 2 of the organ donation process (Own illustration).

Maybe you have already seen it coming. A few years after the decision, Peter went on another motorbike trip and was involved in a fatal accident. The ambulance brought him to the hospital as fast as possible but the physicians were not able to save him. They had to announce him brain dead. Peter’s family was informed and they rushed to the hospital to see him once again while he was still held alive with the aid of machines. Despite these circumstances, they felt relieved that it was indicated clearly on his donor card that he´d like to donate his organs. But what happened next?

While I left Peter the doctors preserved his basic body functions. The hospital notified the organization 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 Eurotransplant network includes about 135.5 million inhabitants (Eurotransplant, 2017, p. 1). However, not all countries have the same legal system concerning organ donation. The legal system shown by the example of Peter is called “informed consent” and is also applicable in Germany. 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.)

On the contrary, the Austrian system, for example, is called „presumed consent“. This means that organ donation is automatically assumed when patients are diagnosed brain dead, unless they specifically registered their wish not to donate (Rithalia, McDaid, Suekarran, Myers, & Sowden, 2009, pp. 1-2). The system of presumed consent prevents situations in which the family doesn´t know which decision their loved one would have wanted. Neumann adds that a decision to change the system in Germany can only be based on a thorough discussion by the society beforehand (Interview F. Neumann, personal interview, 08.05.2017). As this hasn’t been the case so far, there is no basis for a change.

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Figure 6: Eurotransplant Information Video: More than a Match (Eurotransplant, 2015)

Personally, I think Eurotransplant is a big opportunity. First of all, they reduce the loss of organs. With more than 15.000 people on their waiting lists it´s almost always possible to find a suitable recipient for an organ like me (Eurotransplant, 2017). It is scientifically proven that the donor’s and the recipient’s antigens and tissues have to be as similar as possible in order to prevent the organ from being rejected (Busse, 2013). Thanks to a network like Eurotransplant people with special requirements, like a rare blood group, have a higher chance of finding a suitable donor.

Unfortunately, a far-reaching system like Eurotransplant will always include people, who don’t play by the rules. Maybe you´ve already heard of waiting list manipulations that occurred in Germany a few years ago (Zeit Online, 2013). I’m especially shocked, because some of my organ friends were involved. In 2012 a few doctors in Germany manipulated the organ recipient waiting list. They used tricks like the concealment of medical problems (like metastases) and refused medical treatment (like dialysis) for patients to make their medical condition seem worse than it actually was. They also faked the patients’ data (Metz & Hoppe, 2013, pp. 113-116). Eventually, some people started talking and helped to uncover these manipulations. Unfortunately, this wasn’t an isolated case. It happened in seven hospitals throughout Germany! I’ve been asking myself this one question over and over again: why did they do it? Money, prestige or maybe altruism?

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I concluded, that it had to be a mixture between those factors. In some hospitals physicians receive their salary according to their work performance (Interview Küng, member or the board of Healthcare Bayern e.V., personal interview, 03.05.2017). Furthermore, transplanting organs is seen as the supreme discipline in medicine. Last but not the least, the system in Germany is shaped by the “sickest first principle”, which means that the health of a person is the basis for the score on the waiting list (Bobbert & Ganten, 2013, pp. 34-39).

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After the scandal physicians concluded 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. The government exposed more and more hospitals, which were involved in the patients’ data manipulation to achieve higher scores on the waiting list. If you´d like to know more about the scandal have a look at the video (it´s only available in German though).

As a consequence, the organ donation rate decreased rapidly as illustrated in figure 7 below. It shows the number of post mortal organ donors in Germany from 1998 to 2016. People didn´t trust the system anymore. 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 punishable by law. Since it´s really hard to prove that the data’s manipulation led to peoples’ death, involved physicians couldn´t be held accountable. Secondly, they increased the number of on-site controls. Thirdly, they forced every relevant hospital to appoint an independent physician to the allocation process (Zeit Online, 2013).

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Figure 7: Number of post mortal organ donations in Germany from 1998 to 2016 (Statista, 2017).

I can’t decide where I go

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Figure 8: Station 3 of the organ donation process (Own illustration).

The next step on my journey was the transplantation procedure. So how does it work? What happens after Peter’s brain death diagnosis? First of all, Eurotransplant receives all of Peter`s data including blood type, weight and age. They compare Peter’s data with all the patients listed on the waiting list. Each patient is allocated a so called „MELD score“ (Model for End-Stage Liver Disease) in order to determine the ranking order according to which the patient will receive the next available liver suitable for them. Each patient receives a score between 6 and 40. The higher the score, the higher the urgency for a transplantation (Wiesner et. al., 2003, pp. 91-93). In my case, after Peter’s death Eurotransplant got notified and I was allocated to Sue. She´s a 50-year-old woman, weighs 70 kilograms and has a MELD score of 34. At this point I felt like I´ve become a commodity in the sense of Appadurai’s theory (1988). I´m not necessarily traded for money, but the bidder with the highest bet (MELD score) gets me. I´m no longer a part of the human body and seen as such. I´m a thing that changes its owner.

I got removed from Peter´s body by the physicians in Hamburg. Subsequently, they flew me to Amsterdam, where Sue had already been prepared for the transplantation in the hospital. I became part of Sue´s body with the help of her physicians. All this had to happen in a short time because livers like me can only survive one day without being part of a functional body system.

However, this process doesn´t remain undiscussed. While there´s an agreement that there has to be a prioritization of people who are in need of a new organ, there is a constant debate on how to prioritize and rank these possible organ recipients. Bobbert and Ganten (2013) offer two solutions to the problem: select by urgency of need or by prospect of success. There´s no simple solution to this question. Should the sickest person get a chance or is he / she already too sick to have a real chance of survival? Wouldn´t it be better to give me to someone with a higher life expectancy. Where’s the line to be drawn regarding being too sick or being too old to receive an organ donation? Right now, the key factor in this decision-making process is urgency of need.

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Therefore, Bobbert and Ganten suggest that the decision should be passed on to democratic decision making.


My second life

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Figure 9: Station 4 of the organ donation process (Own illustration).

The last part of our journey is Sue’s new life. I’m sure she and probably every other recipient in this world asks themselves questions such as: who was the person I received my liver from? A question you might ask yourself: How does it feel to have something inside one´s body that is not originally his or hers? How does it feel that one had to die for another one to live?

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Sue says she feels more independent and more active with me. But on the other hand, she doesn´t feel completely healthy due to the tiring effects of the various pills that she has to swallow for the rest of her life (Patricia, 2006). Without doubt, the situation to carry someone else’s organ within you is emotionally stressful. There´s a whole range of feelings recipients associate with the organ: joy and sorrow, gratitude and indebtedness, guilt and inequity are only some examples (Sanner, 2003).

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It may be a surprise to you but Sue actually doesn´t want to know too much about Peter. This allows her to fantasize about him or her and she can deny, avoid or suppress any anxiety that 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 to accept me completely. Here we are at the end of our journey. It was a long way from Peter to Sue in a very short period of time.


Summarizing my journey

Let me sum up the most important points I´ve mentioned above. Overall the organ transplantation process is complex and involves many different actors. Because of its complexity, as well as its impact on people’s lives, the mechanism is regulated to a high extent. However, these regulations confront the society with several challenges. In order to avoid allocating organs randomly, there has to be a prioritization of the people in need. Which criteria should be the basis for this prioritization? Is the urgency of need most important or should the prospect of success be considered as well? There is no clear answer to ethical questions and conflicts like these. The answer depends on values in life and often religious beliefs. Notwithstanding all those difficulties and the need to respect the personal decisions and values, the society needs to decide on a fair allocation system. Only a system backed by 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 and you know a little bit more about organ transplantation and the ethical questions that arise along this process.

Yours,

Louis the Liver


List of references

Appadurai, A. (Ed.). (1988). The Social Life of Things: Commodities in Cultural Perspective. Cambridge University Press. Retrieved from http://townsendgroups.berkeley.edu/sites/default/files/appadurai_social_life_of_things_0.pdf

Bobbert, M., Ganten, T. M. (2013). Liver allocation: urgency of need or prospect of success? Ethical considerations. Clinical Transplantation, 27(25), 34-39.
DOI: 10.1111/ctr.12154

Busse, P.J. (2013). Transplant Rejection. The New York Times. Retrieved from http://www.nytimes.com/health/guides/disease/transplant-rejection/overview.html

Eibach, U. (2011), Organentnahme und Organspende aus theologisch-

ethischer und seelsorgerlicher Sicht [Organ removal and organ donation from a theological-ethical and pastoral point of view], Vortrag am 5. Bioethikforum der Evangelischen Kirche im Rheinland, Bonn, 21.09.2011

Eurotransplant. (2015). More than a Match. Retrieved from https://vimeo.com/127909696

Eurotransplant. (2016). Eurotransplant International Foundation Annual Report 2015. Retrieved from https://www.eurotransplant.org/cms/mediaobject.php?file=AR_ET_20153.pdf

Eurotransplant. (2017). Factsheet 2017. Retrieved from https://eurotransplant.org/cms/mediaobject.php?file=Factsheet+20161.pdf

Eurotransplant. (n.d.). Legislation within the Eurotransplant region. Retrieved from https://www.eurotransplant.org/cms/index.php?page=legislation1

Istockphoto. (2017). Louis the Liver. Retrieved from http://www.istockphoto.com/ch/vektor/cute-and-funny-human-liver-character-gm623613998-109439539

MELD and the Waiting List for Liver Transplant. (n.d.). Retrieved from http://www.cpmc.org/advanced/liver/patients/topics/MELD.html

Metz, C., Hoppe, N. (2013). Organ Transplantation in Germany: Regulating Scandals and Scandalous Regulation. European Journal of Health Law, 20, 113-116.

Neumann, F. (2013, November). Wenn wir doch darüber geredet hätten…! Der Hirntod in den Erfahrungen eines Klinikseelsorgers [If we only had talked about it…! Brain death as perceived by a hospital pastor]. Speech held at the conference: Wie tot ist tot? – Am Hirntod scheiden sich die Geister [How dead is dead? – Opinions regarding brain death tend to differ sharply], conducted by der Katholischen Sozialen Akademie des Bistums [the social catholic academy of the diocese], Münster. Franz-Hitze Haus Münster. Retrieved from http://www.pfarrer-neumann.de/wenn-wir-doch-darueber-geredet-haetten/

Organspende. (2017). Organ Donor Card. Retrieved from https://www.organspende-info.de/articles/2081

Patricia. (2006). Patricia’s Liver Transplant Experience. The University of Chicago Medicine. Retrieved from http://www.uchospitals.edu/specialties/transplant/stories/patricia.html

Rithalia, A., McDaid, C., Suekarran, S., Myers, L., & Sowden, A. (2009). Impact of presumed consent for organ donation on donation rates: a systematic review. Research: BMJ, 338, 1-2. Doi: 10.1136/bmj.a3162

Sanner, M. A. (2003). Transplant recipients’ conceptions of three key phenomena in transplantation: the organ donation, the organ donor, and the organ transplant. Clinical Transplantation, 17(4), 391-400. DOI: 10.1034/j.1399-0012.2003.00065.x

Sque, M., Payne, S., Clark J. M. (2006). Gift of life or sacrifice?: key discourses to understanding organ donor families’ decision-making. Mortality, 11(2), 117-132. DOI: 10.1080/13576270600615260

Statista. (2017). Anzahl der postmortalen Organspender in Deutschland in den Jahren von 1998 bis 2016. Retrieved from https://de.statista.com/statistik/daten/studie/70873/umfrage/anzahl-der-postmortalen-organspender-in-deutschland/

Süddeutsche Zeitung (2012). Aktenlage zum Thema Organspende [Video file]. https://www.youtube.com/watch?v=cVD0mIc0A0A

Wiesner, R., Edwards, E., Freeman, R., Harper, A., Kim, R., Kamath, P., Kremers, W., Lake, J., Howard, T., Merion, R. M., Wolfe, R. A., Krom, R. (2003). Model for End-Stage Liver Disease (MELD) and Allocation of Donor Livers. Gastroenterology, 124(1), 91-96. DOI: 10.1053/gast.2003.50016

Zeit Online. (2013). Kontrolleure decken vierten Betrugsfall auf [Inspectors unveil fourth attempt to defraud]. Die Zeit Online. Retrieved from http://www.zeit.de/wissen/gesundheit/2013-09/organspende-leber-puek-bericht

 

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