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GHI
20th August 2003 |
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| Organs Donation Should anonymity be broken? Can one think of a more generous gesture than donating his/her organs to enable others to live? In Switzerland, organs donation is anonymous and free of charge. Yet, certain donor’s and receiver’s families would wish to be able to meet. Charaf ABDESSEMED
Thus, the family was able to compensate the pain to lose a beloved one through the satisfaction of having contributed to saving several other lives. Moreover, Natacha Seppey confirms her extreme readiness to meet the persons who received her father’s organs. And this is where there is a weak point. Swisstransplant, the organism which coordinates activities of donation and transplantation at Swiss level, follows the option of not to transgress the sacrosanct ethical rule of anonymity and not to put in touch families of donors and receivers, whereas in Switzerland no laws expressly forbid it. Distress “Accepting to donate organs of a close relation remains a distress for the family”, Natacha Seppey argues. “After going through the whole process, not being allowed to establish contact with the families and the receivers –if they agree- disturbs us considerably. It can help mourning for some people to know that the life of other people has changed thanks to donation, and it can also help the receiver to better accept the organ psychologically. It is obvious that people who are opposed to these fortuitous or negotiated encounters have not had to face this question.” The same reasoning is made by Pascale Lilla of Montreux who lost her son further to an accident. When reading an article in L’Illustré which was reporting the story of a young transplanted, she reacted promptly: the dates coincided, the young man must have received the heart of her son! On the receiver’s side, numerous elements also enabled them to identify the donor. Encounter Both families managed to meet and would not stop today to praise the benefits such encounters may have brought by for them. Pascale Lilla did not hesitate to create a Foundation entitled “Pass The Baton” for the purpose of promoting organs donation. “We are being taught the rule of anonymity, she objects. Encounters between families of donors and receivers can do a lot of good and do not necessarily open the door to skids. Our decision respects the will of my son Denis and his wish for transparency. For us, there is no confusion. We miss him in his entirety, and not a part of him in somebody else. A doctor even told me: Imagine an organ of your son would be transplanted to your worst enemy. My reply was: at least he will have something good in him!”. Possible Skids An expression in the form of an outburst which Professor Jean-Claude Chevrolet, president of the Clinical Ethics Counsel of the University Hospitals of Geneva, who as of today has never received a request for breaking the anonymity, finds extremely revealing: “For me, this demonstrates well that mourning is not totally done, and the risk is to make the deceased person re-live through the receiver, which is unhealthy. Apart from possible commercial consequences or else, psychological risks are enormous”. Major danger: establishing a relation of dependence between a receiver who is already very fragile at psychological level and the organs donor, as could be seen often in cases of donations from a living donor. “It is hard for me to understand such an approach, the doctor continues. Moreover, nothing shows that the deceased person would have given his/her agreement. After all, the medical secret continues after the death”. Federal Decree Swisstransplant, national institution for organs donation and transplantation in Switzerland refuses to transmit identities of donors and receivers –even in the case of double consent- and stays behind a neutrality principle founded on a Federal Decree of March, 1996. However, the institution does not mean to prevent initiatives of those who try to enter into contact through their own means. Ingeborg Van Hollebeke –a nurse and national coordinator at Swisstransplant precises: “Contrary to Italy where this practise is formally forbidden, there is in Switzerland a Federal Decree which requires anonymity. By essence donation must remain anonymous and free of charge. And, if we are opposed to this contact setting –even with the agreement of both parties- it is because there is no possibility of control afterwards. Financial and psychological pressures are always possible, with all their dramatic consequences. As far as we are concerned, we do not wish to have those problems on our conscience.” Furthermore, the coordinator minimizes the bearing of this phenomenon: “In reality, people who want to meet are exceptions. Most of them claim to be thankful for the donation made to them, but do not wish to meet with donors families. Even if the possibility exists for transplanted people and donors families to correspond anonymously through coordination of Swisstransplant, there are not many families which have given a follow-up to an anonymous letter of a receiver”. Donation Risks This problematic illustrates the latent conflict between the legitimate needs of patients and the imperatives of medical deontology. A deontology which Professor Mentha, responsible for the Transplantation Unit of the University Hospitals of Geneva, places above all. “I am not opposed to the principle of contact setting between families of receivers and donors. I could even say that in some cases effects can be extremely beneficial for certain patients. This approach exists in the USA and goes rather well. For me, the problem rests rather with the worrying situation of organs donation in Switzerland. Breaking anonymity could be envisaged one day if society evolves in that sense. But, the smallest scandal which could result there-from would be a catastrophe for the already very fragile cause of organs donation in general. The risk would be high for something which has taken a lot of time to construct. Worrying Scarcity Ch.A. – Organs scarcity in Switzerland is worrying for the one thousand or so potential receivers waiting, whereas their sickness can only progress. With 75 donors in 2002, i.e. close to 10.4 donors per million inhabitants, Switzerland lags at the queue, just before Luxemburg, but far behind Spain or Austria which rank at the top of the European donors palmares. Beyond these numbers, the most worrying and unexplainable thing is the dropping tendency observed over several years. All the more so, as we have during our life 10 to 20 more “chances” to be one day a receiver than a donor. Another sign of gravity: 52 patients on the waiting list deceased last year, whilst waiting delays continue to extend up to 6 months for vital organs and up to 5 years for kidneys. Several Factors Several elements concur to explain this phenomenon: in the first place, absence of Federal legislation surrounding the question of organs donation –each Canton has its own legislation- which could discourage potential donors (a Federal law is currently in preparation), but also a strong cultural dimension. Certain Mediterranean countries, e.g. Spain, demonstrate a great solidarity spirit. Ingeborg Van Hollebeke, national coordinator of Swisstransplant states: “In Canton Ticino, there are three times more donors than elsewhere in Switzerland. This is probably due to the strong feeling of identity prevailing there. There is also a dimension of trust in the persons taking care of the patient, declaring cerebral death and making the request for organ donation”. Another explanation factor: a lack of implication of the public powers. So far, the Confederation and the Cantons have not engaged in sensitiveness campaigns for organs donation which still remains a private initiative. Swisstransplant Ch.A. - Swisstransplant is a private foundation which, since 1992, manages and coordinates organs donation in Switerland, independently from hospital teams and families of donors and receivers. Its objectives are double: on the one side, promoting through sensitiveness and information actions, on the other side coordinate activities of donation and transplantation, thanks to a 24/24 hour permanence of anaesthesia and intensive care specialised nurses. The major function of this national central coordination centre is to organise and control the allocation of organs to be transplanted in Switzerland according to medical criterion aiming at the most equitable distribution. Information. Information: www.swisstransplant.org, Tel. 0800.570.234. «Pass the Baton» Ch.A. - Created under the initiative of Pascale Lilla and her younger son Guy Lilla in October 2002, the Foundation “Pass The Baton” has the objective of working at the promotion of organs donation through information and sensitiveness campaigns. Main innovation: distribution in Switzerland of a card of organs donor. The corresponding data will be recorded in an electronic data processing register which will also incorporate partial or total donations refusals. Information: www.passezlerelais.org, Tel. 021.964.19.15. E.mail: info@ passez le relais.org |
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