The Low-Coste Innovation Blog welcomes YOU


Welcome to this modest blog I started in early 2005! I'm a Semantic Web Geek and a Web Science Evangelist.

To cure diseases like cancer and cystic fibrosis, we will need to target gene mutations, not organs! I am convinced that the future of replacement medicine (organ transplant) is genomics (the science of the human genome).
Anticipating the $100 genome era and the P4™ medicine revolution. P4 Medicine (Predictive, Personalized, Preventive, & Participatory): Catalyzing a Revolution from Reactive to Proactive Medicine.


After low-cost airlines (Ryanair, Easyjet ...) comes "low-cost" participatory medicine. Some of my readers have recently christened this long-lasting, clumsy attempt at e-writing of mine "THE LOW-COSTE INNOVATION BLOG".

Jean-Michel Billaut, famous French @nthropologist and Net economy geek : "
There are times when I think there are basically two kinds of people in my country ... A '1.0' Top-Management, frantically clinging to and stuck in the past and in (bio)conservatism... and a '2.0' startup ecosystem... building... building slowly... towards the future..."

Catherine Coste,
MIT certificate in Genomics, a Tim Burton fan (whose films are dealing with death, like this modest Blog -- and sometimes we just hate it!), a Wellywood fan (the new Hollywood)... I come from France (hopefully from that "2.0" part thing) and travel a lot: New-Zealand, Asia (Malaysia, Singapore), UK...

A death and health geek and travel buff of some kind, I love meeting new faces
. My motto:
Go Where You Are Celebrated, Not Where You Are Tolerated.

I love Genomics. Would you rather donate your data, or... your vital organs?

Audio files on this blog are Windows files ; if you have a Mac, you might want to use VLC (http://www.videolan.org) to read them.

Concernant les fichiers son ou audio (audio files) sur ce blog : ce sont des fichiers Windows ; pour les lire sur Mac, il faut les ouvrir avec VLC (http://www.videolan.org).


Appel à témoignage - Please share your experience - Teilen Sie Ihre Erfahrungen mit ! Don d'organes - Organ Donation - Organspende :


Appel à témoignage : lettre ouverte aux proches confrontés à la question du don d'organes (lire)

Please share your experience : letter to the attention of next-of-kin of donor-eligible individuals (read)

Im Krankenhaus oder in der Klinik wurden Sie nach dem mutmasslichen Willen Ihres Verwandten gefragt : ob er oder sie sich für Organspende ausgesprochen habe. Bitte teilen Sie Ihre Erfahrung mit ! (lesen)

Avertissement :

Merci de ne PAS poster de messages concernant la vente d'un organe et comportant des coordonnées téléphoniques, e-mail, etc. La loi française interdit la vente d'organes.

ICI LONDRES. LES CHIRURGIENS PARLENT AUX CHIRURGIENS. VIDEO DE JUIN 2013 SUR YOUTUBE : http://youtu.be/peHJg4taa1I

"Les principaux facteurs explicatifs de l'opposition au don d'organes"

En juin 2004, Claire Boileau a rédigé une étude pour l'EFG (Etablissement Français des Greffes), dont voici la synthèse :

"Les principaux facteurs explicatifs de l'opposition au don d'organes. Synthèse d'étude" (document PDF de 16 pages)

==> cliquer ici.

En page 11 de ce document figure une information tout à fait intéressante :
"A ce jour, il n'existe aucune étude portant spécifiquement sur le ressenti des médecins et leur participation au prélèvement d'organes. La participation des médecins, et plus spécialement des anesthésistes-réanimateurs, est pourtant fondamentale pour intensifier les politiques de recensement des donneurs potentiels".


Avant de permettre d'"intensifer les politiques de recensement des donneurs potentiels", une telle étude permettrait de mesurer l'ampleur des clivages existant au sein du milieu médical concernant le prélèvement d'organes en général et la mort encéphalique en particulier.

Les différents critères de prélèvement des organes (prélèvement sur patient en état de mort encéphalique ou prélèvement sur patient à coeur arrêté, voir la classification de Maastricht), la diversité des définitions (mort encéphalique en France, mort cérébrale en Grande-Bretagne) et pratiques (voir le projet pilote au Canada, qui permettra de prélever les reins de patients qui ne sont pas en état de mort cérébrale mais qui n'ont pas de chance de survie ; la France se refuse à suivre cette voie) : autant de facteurs complexes, entraînant forcément une divergence d'opinions au sein du corps médical.

Ainsi, une étude "portant spécifiquement sur le ressenti des médecins et leur participation au prélèvement d'organes" s'avère nécessaire, disait Claire Boileau en juin 2004. Un mémoire de Master en Ethique Médicale, dirigé par le Professeur Christian Hervé et Manuel Wolf, promotion 2004-2005 : présenté par Jean-Christophe Tortosa, ayant pour titre : "Acceptation, par les professionnels de la santé, des prélèvements d'organes sur des sujets en mort encéphalique, sur des patients victimes d'atteintes cérébrales majeures et sur des patients en arrêt cardiaque. Résultats préliminaires d'une étude pilote menée dans deux centres hospitaliers, en France" pourrait répondre à cette attente.

Ce mémoire est téléchargeable sur le site de l'INSERM (éthique) :
==> cliquer ici (PDF, 366 Ko)

Page 21, on peut lire, à propos d'un patient A, qui présente "une perte durable et irréversible de toutes les fonctions cérébrales, les autres fonctions physiologiques (cardio-vasculaires, etc) étant maintenues grâce à des soins intensifs" : "Sur les 22 soignants qui pensent que le sujet A est vivant, 17 sont prêts à accepter un prélèvement d'organe".

Christophe Tortosa conclue (p. 38) :
"Il est à attendre, en France, un débat sur les prélèvements sur sujet à coeur arrêté ou sur la transgression de la règle du donneur décédé, débat foisonnant dans le monde anglo-saxon et confidentiel dans l'Hexagone".

Regret consenting to organ donation : one testimony (Germany)

It was in 1997, when we got the bad news that our son Arnd had had an accident.

"It took my husband and me six endless hours to get to the hospital where he was in an intensive care unit. His head was bandaged after an operation, he was breathing with the help of a respirator and was attached to monitors and other technical devices. He was in an artificial coma. He had a bruise over his left eye. As his right shoulder was not covered we could see a contusion there. Seeing my son, who had been so spirited and active, in this helpless state made my world suddenly dark and cold. The following time my husband and I sat next to him whenever it was possible holding his hands and talking to him. It was like moments of eternity and I thought I would remember these hours as a happy time, nevertheless. I feared and knew deep inside what the doctor on duty would tell us about his chance of survival. But hearing it was quite different. She told us, his family, that his 'brain death' might be diagnosed soon. 'Brain death' sounded like death. My husband said spontaneously, 'Then we’ll probably be asked about organ donation.'"

"The world did not stand still. I did not break down or scream but functioned automatically – my perception, my feelings, my mind being separated, a state usually described as shock. We didn’t know that my husband’s remark made them consider our son as a prospective organ donor from the beginning. The next day the nurse on duty assured us, 'You have come to a good decision.' At that time we were not informed about the regulations and that this question shouldn’t be asked even indirectly before the second 'brain death' test and after the 'brain death' has been declared. Instead we thought we would have to tell them as soon as possible. My son had said to his wife, our daughter-in law, he would donate his organs after his death but hadn’t signed any donor card. So we felt bound to what he had wanted and informed the doctors before the 'brain death' tests about our consent.

Realizing that my son was about to die was so overwhelming that organ donation seemed to be unimportant compared to that. We didn’t even ask anybody for information or advice or discussed this issue. But my daughter and I felt uneasy about it. Five days after his accident when his 'brain death' was diagnosed we gave our formal consent to the removal of his organs – a decision made in the state of shock and ignorance about what it implied.

What did my son know about organ donation? He only knew what the lay public is told, 'Organ donation saves lives.' He believed what the organ donor card says, that organs are removed 'after my death'. And he thought, 'When I am dead I won’t need my organs any longer. Then they can help other people survive.' I had the same knowledge and point of view. We all were not informed about the consequences the organ removal would have. Too late I realized that we had to abandon elementary human rights: My son was treated, tested and conditioned not in his own interest, but in the interest of the organ recipients. So he could not die in dignity, without bodily harm, being attended by his family. Because of the organ removal we could not show him our love by being with him in the hour of his death.

Months later nightmares and inner films of this final operation began to haunt me day and night and made me feel bad and guilty because I hadn’t protected my dying child against the demands of others. I’ll never forget the last sight of my dead son in his coffin. His face told us that his death hadn’t been peaceful.

Organ transplantation is often called an 'established' therapy. The only focus is on the organ recipients. But what organ donation really means for the organ donors and their next of kin is not taken into consideration. After the consent of the family the transplantation medicine doesn’t care about them any longer although it would be essential to listen to those who agreed to the organ retrieval and suffer from the consequences. The lives of a lot of donor families have been shaken, and many of us have lost their peace of mind.

This is what we should have known:

- All the vital signs like the heartbeat, the circulation, the body temperature etc are still present right up till the point when the organs are removed.

- The doctors apply painful stimuli to various parts of the body, especially the face, in order to confirm the diagnosis 'brain death'. If the patients do not response to this the conclusion is that their brain is destroyed.

- My son was not anaesthetized during the operation and got no pain killers. Instead they treated him with paralysing medication to prevent disturbing movements of his body.

- During the retrieval operation his blood was replaced by a cold fluid which flooded through his organs to preserve them for the organ recipients.

- Before the organs were taken his heartbeat was stopped by cardioplegia.
This is my advice:

- You have the right simply to say NO, especially when they ask you about the presumed will of your brain dead family member.

- If you are willing to donate your organs, insist on your rights!

- Make sure that you get all the relevant information.

- Discuss organ donation with your family because it will have an impact on their mourning.

- Decide which organs and tissues you are willing to donate and which not.

- Insist on a general anaesthesia during the organ removal.

- Your next of kin have the right to see your dead body right after the organ removal operation.

- Your next of kin have the right to inspect the files.
This is what I think after my bitter experience:

A therapy that needs the living organs of dying patients to help other patients survive cannot be called established. All those who claim that 'brain death' is death close their eyes to the vital signs of a patient defined as dead. They also ignore the price the organ donors and their families have to pay. Before the accident, I thought that in a democracy people get full and fair information about interventions concerning life and death. Now I know better – or worse."

Source:
http://initiative-kao.de

Regret consenting to donation: 2 testimonies (USA)

This testimony, by Bernice Jones, can be found at : "My little corner of the world". A morally devastated "donor mom" reveals her doubts about "brain death", feels like she has been deceived by the transplant medicine community, and, having agreed to the organ harvesting on her child, wonders if she did not let go of her child at a time when this child would have needed her protection more than ever.


Voici le témoignage d'une mère ayant accepté de donner les organes de son enfant en état de mort encéphalique. Elle se sent finalement trahie par le corps médical, persuadée de n'avoir pas pris la bonne décision, d'avoir été manipulée, d'avoir abandonné son enfant au pire moment. Le ton est émotionnel, polémique.


"The deception is horrible. Those that are in the state of shock and are completely trusting of the physician and staff to preserve, protect and prolong the life of their loved one is defiled. A physician - one who heals - does everything to protect and prolong the life of their patient - don't they? In the event of an emergency and trauma, when the life of a loved one hangs in the balance, what choice does the family of the injured loved one have?"

"I had no idea there were those that would put the honored title of 'Doctor' before their name and disgrace themselves and the medical profession in general with such vile acts of immorality! It is legal, of course, to pronounce one dead when in fact alive. It is legal to dissect one to death - excising even the beating heart! It is legal to treat a patient as a mere object of fresh vital organs in stead of a patient in need of medical treatment, care and compassion to preserve the injured person's life - not the preservation of his/her organs for harvesting for the life of another!

Legal? Yes! Medically acceptable? Socially acceptable? Yes! For as long as the truth remains withheld from the general public and every effort is made in a continuance to perpetuate the myth of one having all signs of life - VITAL FUNCTIONS - and be dead at the same time, people remain - out of shear ignorance and having been deceived - will continue to submit their bodies and those of their loved ones to this excruciatingly painful procedure as an 'organ donor' and dissected to death! This is a crime! It is a an atrocity!

When I first began researching 'brain death' I was appauled by the various definitions. Uniform redefinition of death? Apparently, since there are no laws or moral boundaries governing this coined term it remains solely the opinion of the attending physician. The definition of death continues to expand and expand to achieve death. Within the law there are no provisions for ones faith, rather, open-ended, loose guidlines that allow 'brain death' to be a prognosis as there is clearly not diagnosis! 'Brain death' was establised for the sake the convenience of a timed, planned death.

However, it also remains to be a controversy due to this as well! Thankfully there remain those in the medical field that regard human life as sacred and would do nothing to harm their patient. There remain true physicians that will 'do no harm' even when a patient is presumed to be near death. Killing is not an option - not in the name of 'mercy' or any other name. Truly, for the physician with integrity, based on sound moral principals, life is from conception until natural death! VITAL SIGNS remain to be just that - their patient's SIGNS OF LIFE!

I am very narrow minded. I refuse to compromise truth. 'Brain death' - the redefining of death - is the means in which to jusify the end results - organ transplantation. It is simply a utilitarian philosophy that has been well articulated and propogated. This has been exceedingly successful in promoting death as a cure. It seems to be the icon of our current 'culture of death' as it has been through this developed, established means to end the lives of those deemed to have 'died anyway,' those whose lives in which do not meet the current standard of worthiness or 'quality of life' and are tactfully dehumanized as they are labeled 'donor' and no longer considered a LIVING PERSON.

It is simply amazing. Through a maze of intellicual verbage and after more than forty years we have a distored, twisted and demoralized the view of human life. All of our institutions reflect this morbid concenses that has become readily adapted and has had fatal concequences. This was the intent was it not?

Had I not been in such a state of shock, had I been of 'sound mind,' had I the knowledge I now have of the history of organ transplantation and the invention of the coined term 'brain death,' I would not have been deceived. I most assuredly would not have the title of 'donor mom' - a title of disgrace, guilt, remorse and pain that I now have."
(...)
A testimony by Bernice Jones

Source:
http://forums.delphiforums.com/corner2/start

Another testimony, by the author of the website: "My little corner of the world":


Le témoignage suivant est de l'auteur du site "My little corner of the world". Parents d'un garçon de 18 ans, Kathy Oak et son mari regrettent après-coup leur décision d'avoir consenti à donner les organes de leur fils qui s'est retrouvé en état de mort encéphalique, suite à un accident de voiture. Ils estiment avoir été manipulés, pour eux les familles de donneurs sont maintenues dans le flou d'une communication qu'on peut difficilement qualifier d'honnête. Il s'agit pour le corps médical d'obtenir les organes à tout prix, non de présenter les très dures réalités que recouvre le terme de "don" d'organes, à savoir : les parents doivent abandonner leur enfant mourant et laisser les équipes chirurgicales prélever ses organes, ce qui bien entendu signera la mort de leur enfant. On est dans la violence et la transgression, voire le sacrifice, bien plus que dans le don, selon Kathy Oak, qui parle au nom de sa propre expérience. Aujourd'hui, elle veut s'assurer que les parents qui consentent au don d'organes de leur enfant soient informés de ces réalités, et non laissés dans l'ignorance, manipulés par un discours visant à tout banaliser, pourvu que les parents acceptent le prélèvement, quitte à le regretter après ...


"Nobody seems to want to hear about people like me who regret consenting to donate a loved one's organs and would, if only I could, take the decision back. In my case, the loved one was my 18-year-old son who was declared brain-dead after a car accident in October, 2001. My husband and I were told nothing at all about the special tests that are supposed to be done to confirm brain death, and there is nothing I can see in the 'required request' law that protects shocked and grieving families from being taken advantage of. After carrying the organ donor icon on our driver's licenses for many years, my husband and I no longer do, nor would we ever accept an organ transplant now that we know how poorly donor families can be treated. We would not wish this added grief on anyone anymore than we would wish for anyone to need an organ transplant. It's all about getting the organs, getting the organs, getting the organs. Now I feel like we were brain-washed by all the pro-organ-donation hype we were exposed to over the years. If those who work in organ procurement were honest, they would tell you that the hardest thing you will ever be asked to do is walk away from your child--leave the hospital--while your child is still on life support, still has a heartbeat. Brain death is controversial enough that everybody should know this upfront. It should not be up to a few select people to decide for all of humanity that organ donation is the only right thing to do. I also didn't know until after the fact that brain death accounts for only 1 percent of all deaths, which means that the overwhelming majority of people never have and never will experience the brain death of anyone they loved and will never understand how much less closure there is. The whole thing leaves me wondering if it's really altruism or ignorance that compels most organ donation, and more should be done to make sure it's not the latter."

DonorMom

Source:
http://www.kidney.org/

Mort encéphalique et classification de Maastricht

Sur le site internet de l'INSERM (éthique), j'ai trouvé le résumé d'une enquête datant de 2005 :

"Sur un échantillon limité de 60 professionnels impliqués dans le prélèvement d'organe et répartis dans deux hôpitaux, il apparaît que 83,1% d'entre eux définissent la mort encéphalique selon les critères admis, bien que 22% des décideurs utilisent le critère britannique de mort du tronc cérébral.
90% des soignants sont favorables aux prélèvements sur les sujets en mort encéphalique et 10% des soignants sont favorables aux prélèvements sur des sujets en état végétatif permanent.
Les prélèvements sur donneurs à cœur arrêté sont acceptés pour les décédés de la classe II de Maastricht par 75% des soignants et par près de 30% d'entre eux pour les décédés de la classe III.
Cette enquête pilote, qui sera étendue à d'autres centres en France, laisse apparaître un besoin continu de formation dans le domaine du prélèvement d'organe, tant sur le plan juridique qu'éthique. Elle montre l'acceptation des protocoles de prélèvement sur donneurs à cœur arrêté."

Petit rappel sur les quatre classes de Maastricht :

"Quatre types de situations pouvant conduire à un prélèvement à cœur arrêté ont été identifiées dans une classification dite 'de Maastricht', qui décrit les donneurs potentiels :

Classe I : Les personnes qui sont en arrêt cardiaque et pour lesquelles le prélèvement d'organes est envisagé si la durée de l'arrêt cardiaque est inférieure à 30 minutes.

Classe II : Les personnes qui ont un arrêt cardiaque en présence des secours, et dont la réanimation échoue. Cette catégorie représente la principale source de donneurs potentiels à 'coeur arrêté'.

[ndlr. : Le SAMU constate l'arrêt cardiaque, indiquant l'heure exacte de l'arrêt cardiaque. Si durant une-demi heure le coeur "ne repart pas", le patient est conduit à l'hôpital. Il est branché sur un respirateur artificiel. Une fois l'AVC constaté (accident vasculaire cérébral), il convient d'avoir un temps d'ischémie chaude le plus court possible (problème de conservation des organes). La mort de ce patient est déclarée. Branché sur une machine de CEC (circulation extra-corporelle), le patient subit un prélèvement de sang. Une fois écartée toute contre-indication médicale au prélèvement d'organes, le consentement pour le prélèvement de ces organes est demandé à la famille de ce patient. Ceci se pratique aussi en Espagne, depuis des années. Aux USA, on ne prélève pas d'organes sur ce type de patient, car on juge insuffisante la qualité des organes qui pourraient être prélevés ainsi. En compensation, un système de présélection a été mis en place, concernant les patients de cette classe aux USA. Par ex; si les reins d'un patient appartenant à cette classe sont jugés comme étant dans un état satisfaisant, ils peuvent être prélevés.]

Classe III : Les personnes pour lesquelles on décide d'un arrêt de la réanimation. Cette situation est celle qui pose le plus de problèmes éthiques, puisqu'elle peut être assimilée à un arrêt de soins. Il y a extubation du patient.

[ndlr. : Le Docteur Bernat dirige actuellement un programme en Nouvelle-Angleterre, concernant des patients qui sont presque en état de mort cérébrale. Si ces patients font un arrêt cardiaque dans l'heure qui suit le constat de leur état, ils sont inclus dans ce programme.]

Classe IV : Les personnes en état de mort encéphalique qui font un arrêt cardiaque irréversible alors qu'elles se trouvent en réanimation."

[Ndlr. : A cela on peut ajouter une Classe V : elle est l'équivalent de la Classe II, sauf qu'au lieu de se trouver hors de l'hôpital, le patient y est déjà.]

Source :
http://www.renaloo.com