Colloquium End of life, and if we really talked about it: the essential of the debates.

The workshops of the bioethics, in collaboration with Généthique and the French National Observatory on End of Life (ONFV) organized a colloquium in the Palais Bourbon on 1^st February 2013 on the theme End of Life: and if we really talked about it. This day gathered health professionals of different specialties, all concerned by the end of life, lawyers and polling firm chairmen. The overview of the situation on the end of life in France and their experiences lead them overwhelmingly to affirm their disagreement, and their fear regarding the will of the government to legalize euthanasia.

 

 

 

Death became taboo: our society is marked by the “evasion of death” (1) . Nicolas Brouard, director of research at the INED, observes that we die 4 times less today than in the 18th century, which results in a massive ageing population and an excessive medicalization of the end of life. Moreover France is champion of Europe for the medicalization of the end of life states Regis Aubry chairman of the ONFV. The European survey EURELD, presented by N.Brouard, provides an overview of the death: in 2010, France counted 550,000 deaths among which 17% of sudden deaths, 23.2% of deaths following a medical decision without considering it could speed up death, and 47.7% of deaths after a medical decision of which we knew it could potentially speed up death. In these 47.7% we count 28.1% of deaths after a medical decision of pain treatment, 18.8% of deaths after deciding to interrupt the treatment, and 3.1% of death after voluntary decision to speed up death among which 0.6% with patient’s request, and 2.5% without patient’s request. When reading these figures Nicole Delepine (2) considers there are too many acts of euthanasia in France.

 

 

The law of 4th March 2002 relative to the rights of patients and to the quality of healthcare system, called “Kouchner law” which reinforces the right of the patient to oppose to the treatment (instituted in 1999) and strengthens the right to palliative care.  

The law of the 22nd April 2005 relative to the right of patients and to the end of life, called “Léonetti law”, is presented by Dr. Michèle Salamagne, ex-chairman of the Société française d’accompagnement et de soins Palliatifs (SFAP) (French society for accompaniment and palliative care). She recalls that this law refuses categorically the unreasonable obstinacy, and recognizes a right for any patient to refrain from taking or to stop the treatments. Also, it proposes the anticipated directives, underused in France, which allow integrating the desire of end of life patient. Finally, it foresees the terminal sedation for distress reason and the double effect.         

The voluntary homicide, the incitement to suicide, and the non-assistance to a person in danger are condemned.             

The European Court for human rights recalls (Pretty c/RU case) that the right to live cannot recognize a right diametrically opposed that could be the right to die.

 

 

The polls “for” or “against” euthanasia differ according to the polling companies, in relation with the way the question arises. Such figures are thus difficultly useable to really succeed in giving the point of view on end of life of the French population.               

On the contrary, in all the polls, we find the same ignorance on the reality of end of life in France today. This way 68% of the interviewees ignore that a law prohibits the unreasonable obstinacy (3) , or that 54 % of them consider that the most important point to improve is the possibility to stop the therapeutic obstinacy (4) . Or even, 48% of interviewees think it is not true that the law authorizes the patients to ask physicians to stop all treatments which maintain them alive.    

Miss Marie-José Forissier, CEO of the polling firm Sociovision admits that the perspective of the pain, particularly moral, the disarray of relatives faced with it, the fear of the therapeutic obstinacy (which reveals a lack of knowledge of the Leonetti law), presents euthanasia as a “default resort”.

 

 

 

The Sicard report expresses that the Leonetti law is in fact badly known and applied while it meets the majority of the situations of end of life. Thus it recommends not taking new legislative provisions in emergency. However it makes some recommendations to respect if the assistance to suicide was legalized for exceptional cases, like the collegiality, the presence of the physician at the moment “of the act and the agony”…Finally, it clearly cautions that legalizing euthanasia would “switch the medicine from the universal duty of humanity of accompaniment care to a so disputed action on a universal point of view”. Moreover, the report underlines that such a transgression would have infinite consequences: “any displacement of a prohibition creates other extreme situation, always initially unforeseen and susceptible to generate reiterated requests of new laws”. This way in Belgium since the State authorizes euthanasia (2002), already 25 extension projects have been presented (for minors, people with Alzheimer).

 

 

Euthanasia is not a medical act. Dr. Puybasset, an anesthetist-resuscitator, and head of surgical neuro-resuscitation unit at the Pitié-Salpêtrière hospital and author of the book “euthanasie, le débat tronqué”, reminds strongly that euthanasia is in total contradiction with medicine: “it is not a treatment to stop someone’s heart”. As a matter of fact, there is no need of a physician to kill oneself, it states. He identifies euthanasia, the right to die, as a societal problem which is not medical, and affirms that physicians are not “actors of the political will”. Régis Aubry, for him, underlines that this excessive medicalization of the end of life is due to the loneliness, to the lack of familial solidarity as well as to an economical problem. Didier Sicard is surprised that the society has delegated, for years, the death to the medicine, and suddenly today wants to impose its vision.

What concerns the medicine, Louis Puybasset insists, is the end of life, and the balance which has to be find between the fact to consider vulnerable people like persons who have something to say, and the fact to avoid creating an handicap from scratch: “The responsibility of the medicine is to not create unlikely situations”. Moreover Vincent Morel, chairman of the SFAP, reminds that legalizing euthanasia would create complex situations to associate the palliative approach and the eventuality to kill. For him, legislating is not the adapted answer to the patients’ request, because the Léonetti law already answers it, the euthanasia request of a patient who suffers is in fact “due to our medical incompetence”. Because today we know how to treat pain. But the suffering is multifactorial, specifies a pediatrician from Marseille, and we must take time to accompany it in all its dimensions.

 

The legal contradictions. MP Jean Léonetti, which introduced the colloquium, underlines the French madness of the legal vacuum. Indeed, those who want to legalize euthanasia express that the law 2005 does not cover all the problems. Jean Léonetti then wonders about the possible scarcity of these situations: “do we need a law for each individual, or a common law with values that can adapt to each case? Does the society have to support the will of each individual?”. For exceptional situations, the law cannot intervene explains Mr. Jeanson, lawyer, citing Robert Badinter: “creating a legislation for exceptional cases is not the good way to resolve them”. It is the opinion of professor Sicard who “refuses to make laws for 1.4% of French people”. Thus it is the role of the judiciary to analyze the exceptions on a case-by-case basis, not to the legislative authorities. Then Jean Léonetti plans more judicial flexibility for exceptional euthanasia situations.  

At his turn, Xavier Labbé, lawyer and law professor explains that legalizing on euthanasia or the assisted suicide would mean to review all our legislation. He points out the legal and practical difficulties that would be created. The assisted suicide would contravene the prohibition of the provocation to suicide; the sole consent of the victim can never erase the culpability. The distinction between the assistance and the incitement to suicide would thus be impossible to establish. Also it would contravene the non-assistance to a person in danger: “how to help suicide if the law forces us to save the person in danger”. This would arise important problems in the emergency unit, since there would be suicide persons who will have to be resuscitated, and other not.      

Finally, Professor Sapin, professor in neonatology and head of pediatric surgery department, warns about the ineluctable consequences that will open the legalization of euthanasia regarding the physician proceedings. This will result in an inversion of the principle of precaution which allowed the medical advances during so many years.

 

The necessity to debate. As suggests the Sicard Report, most of the interveners ask for an official debate on the end of life. Louis Puybasset, says he is shocked that the law on euthanasia is planned for the month of June 2013, and that professionals have not been yet consulted whereas they are the first concerned. Similarly, Régis Aubry expresses the emergency to debate, and “certainly not the precipitation to legislate”: “we must debate on the relation to the vulnerability, the otherness, and the singularity” which gather at the time of death. He challenges the relationship to the transgression that the society would develop.

 

The influence of the media. Professor Sapin, denounces the attitude of a society influenced by the media. Dr. Puybasset adds that the exceptional situations which mobilize public opinion are the results of real therapeutic obstinacies: “these patients would have been dead if they have not been resuscitated”. The real problem is then in resuscitation. As in neonatology, where the waiting resuscitation can generate “the conditional survival” of a child who deceased in its absence and which arises real difficulties of decisions.

 

The multiple ideas for the end of life. The participants have noted several ideas to better take into account the end of life, without needing to legalize euthanasia. There are many other things to complete to modify the landscape of the end of life. Didier Sicard talks particularly about the accompaniment to the death at home, Vincent Morel about the collegial procedure in the decisions of end of life, Louis Puybasset about regulating the activity-based payment (T2A) which deprives from human accompaniment, or even establishing a coma plan for instance, Jean Léonetti considering a directive for the magistrates, or more fundamentally like underlines Régis Aubry rethinking our relationship to vulnerability. Sicard report also gives multiple action proposals. l This would allow responding to the difficulties of the end of life, when the legalization of euthanasia will evade them and will add new difficulties.

 

(1) 2012 Sicard Report

(2) Head of the paediatric oncology unit of the University Hospital Raymond- Tribune Economie matin 30/01/13

(3) Poll January 2011, institut Opinion Way on 1,015 adults.

(4) Sociovision mastering a changing world poll 2012-2013 on 2,000 interviewees.