The Cochin Hospital Clinical Ethics Centre published in June 2009 a leaflet called Demander la mort de son enfant…, elaborated from the acts of a working day of the Committee on infantile euthanasia of May 2008. Coordinated by Eric Favereau, journalist and member of the Clinical Ethics Centre and Véronique Fournier physician and head of the Clinical Ethics Centre, this document wants to honour the memory of three children, today dead, to testify to theses painful stories and examine this past, to help the parents and health professionals. The stories of life and death of Carl, Janaée and Jeanne, told by physicians, parents and members of the committee, present situations where the parent demand for euthanasia first came up against the refusal of health professionals who “considered that they probably betrayed their profession, their professional values or their personal convictions when accompanying them in such a way“.
Three questions were treated transversally by the authors: “who is the patient?” (in paediatrics it is impossible not to consider the parents), “finally who has to decide?” (what is the point for people who cannot express their own opinion?), and finally: “is it possible to decide either to precipitate the death of other people and even to choose for him to die?” We present you some extracts from these dramatic stories, with the pain they have and with the hesitations and death-carrying processes they describe.
Carl is a two-year old little boy who drowned in a pond and then was resuscitated. He was in a vegetative coma judged as irreversible but lived without any other medical aid except a stomach tube. His heart beat and he breathed normally. The medical team in France considered that its duty was to keep the child alive, without aggressive therapy, but his mother estimated that it dealt with therapeutic obstinacy. Before being repatriated in France, Carl was cared in Singapore where he had the accident. There, the physicians accepted the parent’s demand to stop everything. However “this was horrible because it was a real death agony. This was lasting, Carl breathed” despite the morphine doses. “This lasted. Then we were told that Carl’s organism was very strong and that he was going to survive. Thus we went back to France.”
The parents very quickly asked again not to maintain Carl alive. They “could not bear the situation of their child, for them he was already dead, he was not the Carl they have known. They told us that since the 24th of December, he did not exist, they were in front of a being already dead” a witness told. For the physician, the parent’s demand to stop feeding Carl was problematical: Particularly because “young child like disabled child depends on the adult to be fed” and it dealt with a “stable child [and] from the moment we fed him, the child was alive“. Finally the physician did not have to choose because the child died from a febrile episode.
Coming back on this case, the physician concluded on this paradox: “Personally, I was always and since the beginning, in favour to meet the mother’s demand. […] On a principle level, I had no problems. The difficulty was much more in the form. I could not imagine me entering the room with my syringe.” For the member of the Ethical committee, the situation needed we recognise the principle of autonomy of the parents because Carl did not have relational life, but “life has to include relationship“: “in this story, if we really want to find an ethical principle, I would say that I would rely on the principle of autonomy not of the child but of the parents“. “For this family Carl’s life was not acceptable while it could have been for others.”
Janaée was born with arthrogryposis: she cannot breathe and eat normally and cannot move. The parents consider that her life is not worth living against the opinion of health professionals who notes progress day after day. A first health team refuses until the end to meet their demand, and it is in another hospital that she was “disconnected”. For her mother: “the law must really be changed so that the parents can make the final choice. For me, causing the end of life when we are sure about the pain, the non recovery and we are sure about the indecent life on a human level, it is not a murder […] To disconnect her and to wait for her heart stops beating, for me, this is called to release a person we love“.
Since Janaée’s handicap was not detected during prenatal examinations, the member of the committee interviewed wonders if “because of this medical mistake during pregnancy, even if the resuscitation team was not responsible, it did not have to take it into account to make the decision. As if it could thus repair something in the story of this child and her parents. It is a notion we call “restorative justice”. […] Next to the principles of beneficence, malfeasance and respect of autonomy, the principle of justice exists in which we can include this element. “
Jeanne was born highly disabled with a confused neurological diagnosis. Her parents estimate that her stomach tube is an inappropriate and too heavy treatment, they ask to stop the feeding. Finally this was granted by the paediatrician, after debate between health professionals and dialogue with the parents and the Committee. Then the little Jeanne died.
For the physician “we can consider that in this story, we overstepped what the legislator wanted; it is not a regret“. Indeed she estimates that Leonetti law is not adapted to paediatrics. The member of the Committee interviewed confessed: “I am not sure, but yes, today my answer is that the parents are probably in the best position to decide whether their child can live in such situations“.
Ref : Demander la mort de son enfant, coordonné par Eric Favereau et Véronique Fournier, Centre éthique clinique, APHP, juin 2009.