Montag, 5. November 2012

Germany suffering cardiac arrest: The issue of organ donations

Germany is infamously known to be Europe’s forerunner. That may well be true for trying to manage the Euro-crisis, technological quality products, and a well-doing economy in times of general trouble. But when it comes to the sensitive topic of organ donations, the picture is actually reversed: Germany is struggling with a lack of donations and therefore the World Health Organisation’s criteria of self-sufficiency since years. A current law reform tries to challenge this. But there is more controversy behind the debate than just the question how to approach the people with this sensitive topic.

By Frederic van Triel 

Around 12.000 seriously ill Germans are on waiting lists for life-saving organ donations, at the moment. Every day three of them die, because of a lack of suitable organs. “We need to approach the people, by asking and double-checking”, as former foreign minister and living kidney-donor Dr. Frank-Walter Steinmeier emphasises, “there is no inviolable right of the people to be undisturbed by this topic.” But is that really the case and what is behind the allegedly insufficient German willingness to donate?

On first glance, the situation seems to be a dilemma: As the number of patients waiting for a liver, a kidney, pancreas, duodenum, lungs or a heart is constantly rising and reached a peak of 2.778 council enquiries in 2011, the number of donors is stagnating since years. 

In 2011 it reached a level of 1200 donors in total which displays a decline of 100 donors in comparison to the previous year. On second glance instead, the situation resembles more a paradox: Whilst 74% of German men and women are potentially willing to donate an organ, only 25% of these people possess an organ donor card. There seems to be a need to bridge a divide between the German aspiration to be Europe’s forerunning country and its empirical truth, when it comes to this controversial topic. 

Mind the Gap:Willingness vs. Reality 

For Birgit Blome, spokeswoman of the German Organ Transplantation Foundation (DSO), which is responsible for the coordination of organ donations in Germany, it is clear, that “it is not the missing will to donate. The problem is the lack of information and the realisation in the hospitals.” To understand what Mrs. Blome means, one has to have some knowledge about the previous and the present German legislation. Before the reform, the so called ‘extended consent solution’ was prevailing law. Meaning that potential donors either had to fill in an organ donor card voluntarily during lifetime, or relatives had to decide about a potential organ donation. In case of an accident, for example, they had to base their decision on the presumed will of their kinsman. A difficult situation for the relatives, as one can imagine. 

The newly passed act changes the legislation towards a ‘decision solution’. Meaning that, by the help of the public and private health insurances, every citizen aged 16 plus gets informed about organ donations and asked about his or her personal will to donate, frequently. The answer however, still remains voluntarily. In situations of uncertainty, the decision is still in the hands of relatives. By implementing the ‘decision solution’ the government expects “an increase in the willingness to donate, because of better informed citizens”, as Daniel Bahr, Federal Minister of Health puts it. A solution not without dispute, as Dr. Paolo Bavastro, cardiologist and holder of the Cross of the Order of Merit of the Federal Republic of Germany, remarks: “Pushing people for a decision with the help of periodic mails is an act of coercion. The law is a purely utilitarian act to get more donations, justice or ethics of the individual are completely left out. It is impossible to ask 16-60 year-olds about this complex issue.” 

Another major point of the reform is the implementation of transplant coordinators, mandatory for every hospital with an intensive care unit. The devil was not exactly in detail but rather structural, as Mrs. Blome reports: “due to staff shortage in the intensive care units potential donors were often not reported to us. The possibility of an organ donation was treated as an additional burden and consequently neglected. Therefore the DSO welcomes the installation of transplant coordinators as the most important improvement of the reform.” With this change the Federal German government follows an allegedly success story: Widening the view to an international perspective, appointed transplant coordinators are effectively pre-existent in other European countries, such as Spain where donation rates are the highest in the world with 32 donors per one million inhabitants. However, there is doubt about a successful implementation in the German case: “staff and expenses are kept at a minimum in modern hospitals there will be a high pressure from the business executives to keep this enormous extra effort at the lowest level possible”, Dr. Bavastro remarks. On a site note it is remarkable that due to its federal system, transplant coordinators were already appointed in eight out of 16 states. A real turning point might look different. 

A lack of Unity in Organ Unity 

The current reform did not come voluntarily into existence: Germany was actually forced to readjust its transplantation laws, by standards set at EU-level, to assure consistent quality criteria. In addition to that, Germany is a member state of the Dutch-based International Foundation Eurotransplant (ET) responsible for the distribution of organs within eight countries, which are Benelux, Germany, Slovenia, Croatia, Austria, and a preliminary cooperation with Hungary. Focusing on the ET-countries, the statistics speak a very clear language: While donations per one million citizens are are considerably higher as often per million capita as Germany. ET is allocating the organs by medical criteria of expected outcome and urgency, however there is a national organ balance involved, trying to keep a reasonable exchange balance. From an ethical point of view there is no difference where the organs derived from ‘dissent solutions’ originate from, Germany’s ET-import-export balance will never be in balance, Dr. Bavastro forecasts: “waiting lists will become longer, no matter which solution is enshrined in law, because the number of people suffering brain breakdown is naturally limited.” 

Another Bone of Contention: Brain Death equals Death? 

There are more disputes than the question of dissent or consent solution, another focal point is the medically and ethically complex issue of death. For years, brain death is used as indispensible prerequisite criteria for an organ donation. From a medical perspective, brain death implies the breakdown of cerebrum, cerebellum and brain stem. In Germany, the German Medical Association derived the prerogative of interpretation when it comes to this sensitive issue, defining a three step model to declare brain death: First the type of brain damage has to be tested, than coma, areflexia (non-existence of reflexes) and apnoea have to be assured. At last the irreversibility of the brain damage has to be proven, by twelve to 72 hours of observation time. Dr. Bavastro hereby dislikes the strong ties between the DSO and the German Medical Association: “DSO, Eurotransplant and the German Medical Foundation have reached monopoly status to set the rules. These institutions must be absolutely independent, to avoid any conflicts of interest.”

An additional point of criticism is the lack of additional instrument-based diagnostic investigation. The phenomena of brain deaths giving birth and reactions physical of brain deaths during organ removal shed a critical light on the criteria. Dr. Bavastro states: “The equalisation of brain death and death is a severe lie. Why else should organs be extracted under anaesthesia?” Pastor Lauterjung adds: “we accurately have to account for the process of dying. In case of uncertainty we have to state that the process is over when all organs stopped working irreversibly – even if that contradicts a potential donation.” There are counter-arguments to these accusations, neurologist Dr. Stephanie Förderreuther, for example defines brain death as “clinically definite and reliable proof of death”, and ongoing she concludes that “without brain function, the unity of a person both physically and spiritually is no longer existent.” However, these contradictory opinions show how sensitive the topic is, in medical and in ethical views. When there is a vital dispute among experts, how can ordinary people be self-confident with their individual decision then? Not to mention taking over the decision for a relative. 

Suppression: A German Speciality 

There seems to be a high level of uncertainty in German society: 82% of Germans do not possess an organ donor card, although they are for free and distributed in multiple ways. 32% of these people feel insufficiently informed, as the Techniker health insurance found out in 2012, whereas only 6% oppose organ donations completely. “Germans have trouble dealing with the topic of death. The possibility of organ donations does not enjoy enough public awareness. As long as one did not get personally in touch with the topic through their family or friends, it has little relevance during lifetime. We tend to ignore this part of life”, Birgit Blome concludes in a disillusioning way. Pastor Lauterjung proves her point: “it is good that the ‘decision solution’ forces people to think. However, I’m afraid that many are overwhelmed with the issue and its medical processes. The distress which is to be relieved is a great unknown for most of the people.” A completely reversed effect could come into place too, as Dr. Bavastro inverts: “There is no public enlightenment by medical standards, there is effect-driven propaganda. Germans tend to react towards obtrusive pressure with skepticism and distrust. There will be no increase in donation numbers following this new law.” 

Which effect will come into place is not to be predicted, yet. An increase of potential donors may well happen, as public awareness will rise. However, as long as there is no consensus in EU-legislation and no consensus in medical criteria for transplantations, it remains doubtable, whether public trust will rise significantly. For the German case that may entail that the World Health Organisation’s goal of self-sufficiency will not be reached in the near future.


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