 Our next presenter may have come the furthest of anybody for our conference, I guess, Veronique Fournier, who's a cardiologist and public health physician, who in 2002 founded the Center for Joint Clinical Ethics at Cauchy Hospital in Paris, and in 2010 published a book called Bioethics Bizarre. That's B-A-Z-A-R-R, A-A-R, not A-R-R-E, in which she describes a collection of life stories that she describes as disrupting public morality. And Veronique will speak to us on end-of-life care in neonatology in France, the impact of recent changes in legal regulations on clinical practices. So welcome to the podium, Veronique. And thank you too for your excellent guidance to our clinical ethics center in France. It has been very important for us, and we feel part of the big Maclean family. And please go on with that. We need it. We need your support, and we need you to come in France and visit us and do clinical ethics with us. And I can tell you that we are planning a clinical ethics conference in Paris in 2014, and you are all invited to present something and to submit something. Before presenting, I would like to acknowledge for my poor Frenchy English, so please be indulgent, and if you don't understand exactly what I say, I hope the slides will help you. So I chose to speak today about the preliminary results of our work in progress we have in Paris for a few months now. And it's about end-of-life practices that change quite drastically in France since a new law has been adopted in 2005 about end-of-life. This law doesn't say anything very original. Just say that activitonase is forbidden, futile treatment is forbidden too, and people have right to have access to double effect treatments. But it changed quite radically the practices at the end of life, especially in NICUs. Why in NICUs? Because in NICUs before, since the 90s, the model in France was currently what has been called the resuscitation pending model. When a baby at birth, when the diagnostic and the prognosis of the baby was quite uncertain, doctors usually resuscitated a lot. And wait a few days or a few weeks to be more clear about the diagnosis and the prognosis. And if the baby seems very badly impaired after a few weeks, even if the baby had become autonomous, the doctors could decide to stop treatments and to hasten death even actively. This model has been quite heavily denounced in France, namely by the National Ethics Committee in 2000. And then because of the law forbidding quite firmly activitonase, the team decided not to do these sort of things anymore. And the paradigm has changed a lot, and now they don't do any more lateral injections, and the recommended approach is palliative care, including withdrawal of artificial nutrition and hydration. You must know that in France we never did this withdrawal of artificial nutrition and hydration before 2005, neither in adults or in pediatrics. And at this point people said, well, if our colleagues in the States are doing that, we should do that too, and we are going to try it. But nobody had any kind of experience about this. And these practices, the withdrawal of artificial nutrition and hydration, still remains quite controversial, even so more in neonates. So we decided to implement a clinical ethics research study to understand further what was going on on the ground for people who were facing such decisions, mainly parents and healthcare workers. As I told you, the work is still in progress. We don't have finished it exactly now, but it is composed of two parts. The first part is general interviews about the practice with high-respected professionals in the neonatalogy field, and the second part is a qualitative study about the perception of the practice by parents and healthcare teams, consisting in one-to-one interviews of 45 minutes around, at least six months after the baby died. I will not detail the grid for the interviews. We could do this after if you have any questions. I'll show you on this map all the centres that participate in the study to show you that they are quite all over the territory in France. What is the population description for the qualitative study? 18 neonates will have been decided with an elective decision of withdrawal of artificial nutrition and hydration, and about these 18 neonates we interviewed 41 people 11 parents, couple or single, and 30 caregivers. In seven cases, the parents refused to be interviewed for four cases and could not be reached for follow-up in three cases. I will not describe the population either because I don't think I have time for that. We can come with questions after on this population. I just would like to stop two minutes on this slide. In six cases, the baby died in less than four days. Then in one week, he died in four cases, he died in less than one week. In one case, the baby didn't die after eight days, so the parents asked to withdraw the nasopharyngeal cannula that the baby had, and he finally died because of that. And in seven cases, the baby died in more than two weeks. They died from withdrawal of artificial nutrition but late and probably due to an adjusted practices, too much fluids and enteral analgesics and sedation, which were not very operant. So our findings show that there are three different theoretical as well as practical models for what concern end-of-life practices now in NICU. On the left, you have the first model, the quite new one, just because of the new law. So people chose withdrawal of artificial nutrition and hydration with the minimum sedation just to be sure that the baby is not suffering, but it is in a life-respecting project. The idea is medicine can't do nothing more for this baby, so we withdraw everything which is active and treatments and we let the baby do what he wants to do. If he wants to survive, he has to survive. If he is not surviving, he will die. On the opposite, so you see that's a minority position and it's mostly younger doctors. On the opposite, the third model is quite similar of the old model. It is no withdrawal of artificial nutrition and hydration, but terminal sedation up the baby die. The intention is really to bring about death, but not to do it illegally, too much illegally, with a lateral injection, just with a sort of terminal sedation or what sometimes people call palliative etanasia. And in the middle are the most part of the practices at this point in France. It is withdrawal of artificial nutrition and hydration with little or more sedation, but in a palliative care, too, and of life. The intention is really to bring about death and the majority of doctors try to do this, in conformity of the law, but they are not really expressing moral is. There are much in moral is on the two other models, but not in this middle model, maybe due to quite unstable practices. In the five centers we are studying precisely what they are doing, two are belonging to the first model I will show you and three in the second model. The center three and five, they are doing palliative care as a life-respecting project. They propose this with stop hydration and nutrition only for mature babies. They don't propose any systematic sedation. They propose regular stimulation for natural feeding and at the end, very often the baby feeds spontaneously. The problem is that in this series, more of 50% of babies are survivors. And I remind you that these babies, they have been considered by medicine very badly handicapped probably. So it is a problem now because these babies, a lot of them are survivors and we don't know exactly for what sort of quality of life. In the middle, in the model two, you have three centers, the three other centers in two different waves. The first wave center two and four with role of artificial nutrition and hydration is part of the care and of life project with practices that has been adjusted between 2009 and 2011. Now, people put central catheter so they can do only low fluids and parental sedation adapted to edin scale. No more than one trial for natural feeding. If the baby don't feed naturally, they don't propose any more to feed. And in center one, you'll see it is in the middle between model two and model three. With role of artificial nutrition and hydration is part of a more active and of life project and they do not hesitate to give high sedation at the really beginning of the withdrawal unlike classical palliative care. What can we say about the overall perception of withdrawal of artificial nutrition and hydration? On the 11 cases for which we have seen the parents as well as the health care team, parental perspectives were not so good and very badly perceived or ambiguously perceived in eight but on 11 cases. And in caregivers, you can see that the perceptions was a little better. But it's important to notice that for four among the seven lost cases, the team's perspective was that the practice has been very badly perceived by themselves and by the parents. And that might be the reason for what the parents refuse to participate in the study. We try on this global schema to illustrate our main findings. The point where we are, we think that there is a sort of virtuous threshold on these point three to five days where there is a sort of optimal balance, ethical balance. It is the point where people say that the practice has been the most human in a way. Depending on time, time was not too short and not too long. Depending on control, there was not too much control by doctors and by medicine to hasten death and related to communication, good relationship and good building relationship between the team and the parents. If the time is shorter on the left, people feel that it seems like activity in Asia too much control of medicine on death, too violent, brutal, artificial, not natural. And if it's too long on the opposite, on the right part of the table, people feel it like inhuman in a way because it's a too long, prolonged dying process with a high risk of survival of babies with poor quality of life. Too long, too much physical deterioration, no respect of human dignity, that's what the parents are telling us. And doctors do not assume their responsibility. So considering end-of-life practices in NICUs, we will say that visual hydration and nutrition looks like ethically-tenable only if it's part of a clear palliative end-of-life project. It is done with appropriate practices and if the baby does not survive more than a few days. In such condition, it seems that it could bring a substantial benefit compared to previous practice because more time for dialogue and preparation for death, more communication and support within the team and with the family, and less control over death. For the discussion, we would like to compare this with the Toronto study that has been published a few months ago in the BMJ by Helman and Al. They did the same thing, a retrospective chart review with a parental survey. They included 15 neonatal deaths following specific decisions for withdrawal of hydration and nutrition. Ten parents participated. They were inquired through a brief questionnaire at least one year after the baby's death and the results were favorable perceptions for all parents. What are the similarities and differences between our results and the Canadian ones? Similarities, importance of good communication and relationship building, differences, parental perceptions, favorable in all cases in Canada, and only in three cases out of 11 in our series. Time and physical deterioration didn't appear as thumb-in blocks in the Canadian study, were heavily denounced in the French one. With terrible words, I can tell you about the baby team if you like after. Meaning an intention of using which role of artificial nutrition and hydration not discussed in Canada, very controversial in France. What are our hypotheses to explain such differences? We propose two hypotheses. Maybe the difference is due to difference in research methods. In Canada, they did that by mail questionnaire and we met people for individual interviews and qualitative long interviews. And the researchers are not the same. It was the consent-pegiotic team in Canada and in our country it was outsiders from the pegiotic team. Second hypothesis, the difference may be due to differences in previous practices. We are wondering if maybe the Canadian parents were not happy of having this possibility because they don't have any possibility to let their baby die before and they might consider that the purpose for the baby was to die. So maybe they were happy about having a possibility. Whether in France, in the past, people have possible to have access to active energy for such babies and they don't have any more. So they might consider that it is a regression in a way. In conclusion, we propose to consider that in such cases the key ethical issue should be to express solidarity in acting for alleviating as much as possible the suffering of both the parents and the baby in respecting their own timing and not only the biological timing of death but the global timing, the holistic timing of people and family and in clearly assuming the intention of bringing about death. For what we are concerned, we think that the ethical issue to remain focused so much on whether death is actively provoked or not. And we think that the role of the law should be to insist on the necessity of a collective commitment vis-à-vis the parents that are confronted with such momentous circumstances rather than on setting limits and reminding interdictions. So those are the names of all the teams that we are working with and thank you to them very much and those are the names of all the fellows in our centre who participated to this study and Nicola is part of them so thank you to them too. Thank you very much.