22nd of June is the National donor day in France. But we shouldn't wait for this opportunity to highlight families confronted to organ donation, whatever their choice. I’m writing this open letter to the attention of families who once (recently or a long time ago) had to choose between donating organs from their "brain dead" relative, or refuse this donation, whatever the reasons might have been. I’m writing in the hope I can also receive testimonies in the context of donation under cardiac death (DCD).
Parents or relatives or friends confronted to so called "post-mortem" organ donation, let me tell you some home truths you may very well be aware of: we hardly hear or read about you at all! How come organ donation is not primarily about your own experience? This seems extremely odd to me. "Donating organs is like giving birth", so says a MD PhD. The newborn and his mom should be fine, though. Nobody expects the mother to die, do they? Another MD PhD, Pr. Bernard Devauchelle, a face transplant pioneer, said in May 2009: "Organ and tissues retrieval or procurement is like a ceremony (…)". Birth or ceremony, two different points of view regarding organ donation, though not utterly antagonist, you might even say: two complimentary points of view. The first one is dealing with the gift of life; the second one reminds us of some very uncomfortable facts – some facts we so easily tend to forget about: this gift of life occurs during the dying process of another person (the so called "donor"). Organs and tissues from a cadaveric body won’t cure anyone, will they? So talking about a ceremony does make sense in this context: religious or non-religious ceremonies accompanying death and the burial of the loved one. Giving birth to a child, after a nice baby shower party, is quite different – happens in a quite different context. This matters a lot, doesn’t it? Both situations are commonly seen as similar, though, essentially by transplant surgeons, who are, as you might imagine, more than happy to be able to "save the life" of a critically ill person thanks to an organ transplant or grafting. Before a so-called "lifesaving" organ can be grafted on some patient, it has to be retrieved from another one. Your experience about these facts, your point of view is what matters in this organ transplantation activity.
I’m mightily interested in your point of view, because I do believe I cannot understand a damn thing about organ transplant (and actually nobody does) if I haven’t heard about your experience. Facts do matter, not mere principles, like generosity and so on! Your hard won experience is what matters, what cannot and must not be left unspoken. The so called "obligation of discretion" – the Discretion of doctors – will not help the broad public understand what the media mean with "organ donation shortage" that "kills people" (some 222 in 2009 in France, according to the Agence de la biomédecine). Is this just honest indignation? Is this tinkering with facts? A French sociologist, Philippe Steiner (University of La Sorbonne, Paris) talks about "organ donation" resulting from some kind of "social marketing", like he puts it, as donation used to be called sacrifice in the first place. What do you think of these harsh words? You – of all people – have earned a right to talk and this is understatement. Are organ transplant a vicious circle? Did we, at some point, miss some kind of opportunity to see a different world?
You have accepted or refused this "gift of life"? Did anyone try to make you feel guilty? Did you feel guilty anyway giving away the organs of the dying loved one?
"Post-mortem" organ donation is usually presented as a common thing. The banality of this gift is often underlined before the organ procurement happens. Afterwards, however, organ donation is often sublimated, says French sociologist Philippe Steiner. What is your own experience?
According to some sociologists who specialize in organ transplantation, getting some feed-back on next-of-kin donation decision is particularly difficult. How come? Who should be to blame for this ? Blame or fault, we are familiar with this concept in the context: "due to organ donation shortage, XXX critically ill persons have died this year."
The organ transplant medicine community failed to inform the broad public about this particular experience: what about the next of kin donation decision? We always hear about the same kind of experience: parents who were so happy to give every organ and tissue that could be procured and grafted, and who never experienced any kind of doubt or regret. Informed consent regarding organ donation means: we hear about every kind of experience regarding next of kin donation decision. Not only about the (over)happy or (over)joyous kind. Or we just might as well stop talking about informed consent regarding "post-mortem" organ donation. Maybe doctors think they have nothing to do with this, as their role is mainly to cure people, meaning, performing as many organ transplantation as possible, to cure as many critically ill patients as possible.
Human aspects of medical sciences have become less important than some technical aspects. Not really new … This is a trend, or a fact, not to be debated here as I have no solution. My main concern is I just cannot believe in this sole and unique category of (over)happy and (over)easy next-of-kin donation decision. This sounds too much like promoting organ donation (pushing too hard on Donation), not enough like information. I’m determined to hear what you’ve got to say, even if this means that I will become less enthusiastic than I used to be when I was twenty about "post-mortem" organ donation.
I’ve been trying to listen to what you have to say since March 2005, to pass on messages for the attention of the transplant medicine community - very uncomfortable ones sometimes. I’ve been keeping some secrets, like when you didn’t want me to mention your ordeal to anybody. Hush, hush, mom's the word … So I kept all this inhuman pain secret, just as you wished. At other times, you wanted me to proclaim your displeasure for this very same reason: the inhuman pain … Sometimes transplant surgeons or coordinators just didn’t want to hear anything about those ordeals and became incredibly aggressive.
Why such an exemplary commitment to your cause, since I have nothing to do (touch on wood!) with organ transplantation from a personal point of view? I came to the conclusion that you don’t stand a chance to be heard, unless you (over -) commit to the Organ Donation cause, which is what you sometimes do. Hope this helps? …
Presumed consent to organ donation is the law in France. It has always been. How does this find its ethical justification in the information regarding organ donation for a broad public? Well, "brain death" is not very usual: only one per cent of yearly deaths are "brain deaths". We do have an exception, though, where "brain death" is more common: Spain, because of corrida (bullfighting). So it is commonly said that you stand a better chance of becoming an organ receiver than of becoming an organ donor, from a sheer statistical point of view. But if only one child in one hundred dies if bitten by a snake, you don’t have 100 children. And if you’ve only got one and if he happens to be bitten by a snake, you just don’t care about the damn statistics.
Like another MD, PhD, professeur Jean-Michel Boles (University Hospital of Brittany, Brest), stated in June 2009: "the organ transplant activity is changing: a change in quality, due to quantity." 15.000 patients on the transplant national waiting list in France in 2010! More than 4.000 organ grafts on a yearly basis, 12 organ grafts per day on an average. For these, each and every day you’ve got to find 3 or 4 donors which would be dead persons with functional vital organs. We would need three times this quantity to cope with the tragically called "vital organs donation shortage". It is indeed a tragedy!
In France and since 2007, "brain death" is not the only kind of death allowing organ retrieval. Heart failure can also permit organ procurement, this is the so called donation under cardiac death (uncontrolled cardiac arrest leading to the harvest of kidneys). In the US, in Canada, Belgium and other countries, this program of Donation under Cardiac Death has been implemented a long time ago, however it differs from the French one: controlled cardiac arrest leads to the procurement of some vital organs and of some tissues in these countries, consequently to an end-of-life decision, which is not the case in France, where a patient’s cardiac arrest is said to be irreversible, but it is said that no end-of-life decision has been made that would be, in some way, linked to organ procurement. Uncontrolled cardiac arrest in France, controlled cardiac arrest in the US, UK, Belgium and Canada. Can you tell the difference? If a patient’s cardiac arrest is said to be irreversible, because this is the decision some doctors have made, how come we don’t call this an "end of life decision"? Kind of tricky, isn't it? Anyway, "brain death" is a very scarce organ resource; heart failure is not. It’s much more common. Law and ethics are aiming at extending the donor pool, as the need for the resource is breeding much quicker than the resource itself. The dying process has become a resource for organs. I would definitely call this fact "a change in quality, due to quantity".
If you don’t have your say in this matter, then we can reasonably talk about "organ donation" as a result of some kind of "social marketing". Underestimating the complexity of next-of-kin organ donation decision or process might be very harmful for some of us. Please - just remember your questions, doubts, feelings, the incredible pressure because a decision needed to be taken. You’ll never make me believe this was incredibly easy, even if you’re awfully good at it.
What can be heard on the radio, seen on TV, read on the internet – I just don’t like it when people are pushing too hard on "organ Donation". I think it's even counterproductive, because I don’t believe I stand a better chance of receiving an organ than becoming a donor. Not anymore.
"(…) a change in quality, due to quantity."
I would like to hear about your experience because a French publisher is interested in a book collecting your happy and sorry stories. This publisher specializes in social or societal issues. Should you be interested in this project, please let me know!
Warmest regards.
Catherine Coste
Pour la première naissance en France à partir d'ovocytes congelés, le Professeur René Frydman a dû contourner la loi française qui devrait être révisée en 2011. 
Suite à mon appel à témoignage de Juin 2010, je reçois des mails demandant si mon projet de livre destiné au grand public et entièrement consacré aux témoignages des familles confrontées à la question du don des organes et/ou tissus d'un(e) proche est toujours d'actualité. La réponse, plus que jamais, est : oui. Pays concernés : toute l'Europe. Langues : anglais - allemand - français.
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