Soon an online register for French people opposed to the removal of their organs

From January 1st, a national register will be kept online on which it will be possible to object to the removal of organs. This is the outcome of the implementing decree of the Health Law of January 26, 2016. The aim is to relieve the relatives of the deceased by preventing them from making a decision.

Sf organ donation can be considered as noble, its current conditions for 40 years raise moral problems mediatically stifled by the encouragement of donation, the testimonies of the recipients and the absence of real information, except in a pearly way in the ocean of argumentation in favor of donation. However, who says "donation", says "consent", which is certainly provided by law, but pretending to believe in the approval of the donor if no refusal is attributed to him. This is the principle of presumed consent. No matter how noble a gift, shouldn't it remain voluntary, by definition and by ethical principle?

There are two types of organ donation in France, during life and post-mortem. It is obviously the second which is affected by the new legislation. Since the Caillavet law of 1976, unless otherwise provided in the National Register of refusals or opposition from relatives who testify to the deceased's choice not to donate, any person in a state of encephalic death is presumed to consent to the removal of their organs. Faced with an individual in this situation, the medical team must consult the register, if they feel they need the organs, and question the family of the deceased if they had not indicated anything. People who do not want their organs to be removed can fill out a form that they send to the Registry. With the legislative change, the procedure will be easier and clearer, and moreover publicized by a national campaign carried out from November 19 to December 4.

A poorly informed public that appears to be proactive

Today, only 7% of French people are aware of the modalities of organ donation, a figure to be compared with the 15% of students currently choosing law, not to mention all those who have studied it. If the population surveyed and that initiated in the law are of course not identical, a cross-checking can be made which suggests that, without a share of respondents knowing at least the basics of individual freedoms, the percentage of people aware of the legislation would be even weaker. Besides, according to a Harris Interactive poll commissioned by the M6 ​​television channel and published on March 15, 2016, 59% of French people think that they must have expressly declared themselves in favor of donating their organs for doctors to remove them.

Overall, 84% of French people agree to donate their organs after their death, 61% for all organs and 23 for only part. There would remain 16% of people who do not wish it, but the information on the possibility of opposing the withdrawal constitutes the counterpart of the presumption of donation, and this fringe of the population does not necessarily know its right to refuse. It can also be assumed that the "survey factor" distorts the results, the sample being presented as a donation, that is to say from a purely positive angle, the people questioned may give insincere answers for fear of moral judgment:

  • When you think of organ donation, what are all the words, all the images that come to mind? - Open question, spontaneous answers.
  • After your death, would you be in favor of donating your organs or not?

Little informed on the question of post-mortem organ donation, the French apprehend the survey in a positive way, because of the testimonies of recipients smiling and overflowing with gratitude, and the choice of vocabulary, the term "donation" being positively connoted. The refusal rate exceeds however the 30% when it comes to authorizing the levy on relatives : should we see a greater inclination to dispose of his dead body? You have to take into account the affective factor, but also the impact on loved ones mechanical ventilation which keeps organs in good condition until the sample and which gives the illusion of breathing. But it is probably also necessary to consider that an answer sometimes, if not often little thought out to the questions of a poll, purely theoretical, and to which it is fashionable to give an answer going in the direction of the supposed majority, is quickly forgotten. when the matter materializes.

Upstream of this new provision: a law to bypass families

Last year, the deputies approved an article of the bill of the bill to modernize the health system, which provided that, as of 2018, families would no longer be consulted about the removal of organs from a deceased relative. The presumption of consent should be further reinforced according to elected officials, which had alerted health professionals, including Professor of Medical Ethics at Paris Sud University, Emmanuel Hirsch. The latter warned against breaking the delicate bond of trust between families and the medical profession, and continued his criticism by adding:

“This form of quiet appropriation of the corpse can rightly question and worry. The very meaning of the gift of oneself to another is it not distorted, since the legislator prefers the presumption of an acceptance by absence of anticipated expression of an opposition (in the form of administrative registration) to the affirmation of a "free, informed and express choice", the very definition of consent? "

For the authors of the amendment, approved by the Government, it was necessary to remove by force of law the obstacle posed by the opposition of families in nearly 33% of the situations where the possibility of a levy turned out to be interesting. . The families were thus guilty of excluding 1 people with brain death from the “donation chain” at that time.

The bill adopted on December 17, 2015 finally provides in its article 192 that "the doctor informs the relatives of the deceased, prior to the planned removal, of its nature and purpose, in accordance with good practices adopted by the Minister responsible for health on the proposal of the Biomedicine Agency". Information is not the request for consent, the ethical drift is serious, it is a matter of reducing the deceased even further to a public good and snatching him from his family, for the sake of charity. The deceased had to have expressed his refusal on the National Register dedicated to it, and a decree was to specify the other means of opposing it.

Like Professor Hirsch, the Order of Physicians denounced this text remembering that the authorization to withdraw can only come from the deceased or his family. The Minister of Health, after consultation with the Biomedicine Agency, the National Council of the Order of Physicians, associations and elected officials, has decided to take a decree partially neutralizing the disputed article, leaving a certain status quo, in a form however different from that prevailing until next January 1: in the event of no refusal in the Register, a written, dated, nominative and signed opposition must be provided by the relatives; if the person does not express himself in writing, the testimonies of his relatives will decide. It is to help facilitate decision-making that it will be possible to oppose online organ harvesting.

If the regulations make it possible to avoid the drift of the law, the principle of presumed consent in the absence of any explicit opposition is in itself an ethical drift. While in common contract law, consent must be explicit and be based on reliable information from the co-contracting parties, the State considers that the deceased who had not expressed anything and whose family is silent, agrees that his organs are taken, which is a denaturing of the donation. The individual's body is therefore considered a kind of public good, and taking possession is legitimized by emotion. If organ donation deserves to be highlighted, what is akin to spoliation deserves to be indexed so that everyone can choose the destination of their organs. “No one is supposed to ignore the law”, is only a legal fiction, and respect for individual freedoms requires morally to be taken into account.

Hans-Søren Dag

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