The young 14-year-old Inès, who had been in a coma for one year, died recently when mechanical ventilation was disconnected. On January 5, 2018 the doctors recommended this decision, which was validated by the Council of State. Treatment was discontinued on June 19, 2018, against the parents’ wish.

On June 22, 2017, Ines had a cardiac arrest at home, due to her rare neuromuscular disease: autoimmune myasthenia gravis. The ambulance emergency squad resuscitated her and admitted her to the University Hospital in Nancy, where she remained unconscious but in stable condition since then, via artificial ventilation and gastric tube feeding.

On August 3, 2017, the parents were informed in writing of the physician’s decision to extubate Inès and stop mechanical ventilation, after having implemented the collegial procedure provided for by law, judging that it was now a situation of “unreasonable obstinacy”.  However, they agreed not to enforce the decision against the parents’ will.

The parents then filed several different appeals. In January 2018, the Council of State’s report stated that “according to the report established by three medical experts, carried out on request of the administrative court in Nancy, the neurological prognosis of the child is even more severe, she is in a persistent vegetative state, unable to communicate, the irreversible nature of the neurological lesions being certain in the current state of science “. As a result, “considering the current knowledge in medical science, continuing treatment could be characterized as unreasonable obstinacy”. The European Court of Human Rights came to the same conclusion.

The date of Tuesday, June 19th, was chosen to disconnect the respirator, which was to be accompanied by highly qualified palliative care. This procedure is a tragic and painful experience for loved ones. The parents attempted to postpone the deadline, which was finally postponed until late afternoon. The young girl died 40 hours later on Thursday morning, June 21st. Security forces had to restrain both parents from interfering during the discontinuation of the respirator.

The French “Inspectorate General of Social Affairs” (IGAS) published its evaluation of the 2016 end-of-life law. The report gives suggestions for assisting medical teams and families in the event of tenacious conflicts. Quite frequently, medical teams initiate the decision process to limit or cease treatment, while patients or their families are often convinced that their best interest is to remain in opposition. The rapporteurs explain that “medicine finds itself trapped by continual rhetoric on medical progress”.

For Alliance VITA, it is agonizing to speak out on such cases of human suffering. Nonetheless, last January, Alliance VITA’s General Delegate, Tugdual Derville proposed his reflections on the current case. He carefully showed the difference between the case of Inès, and that of Vincent Lambert, who is in a pauci-relational state and does not require mechanical ventilation.

“The situation of the young Ines cannot be compared to that of Vincent Lambert. It is with respectful trepidation that we speak out on situations involving conflicting opinions within families, or between relatives and caregivers, which have been made public, either by media coverage or by legal accusations. Nevertheless, for Vincent Lambert’s case, we spoke out to emphasize that in our viewpoint, pursuing an enteral diet (once a gastric feeding tube has been inserted) and giving artificial hydration, both essential for the life of a pauci-relational or neuro-vegetative patient does not constitute unreasonable obstinacy, but only due care, which patients always deserve (to be kept warm, washed, dressed, fed, and hydrated). It should be noted that Vincent Lambert is not in an end-of-life situation, and that he breathes without mechanical ventilation. 

Regarding young Ines and the arduous conflict between her parents and the health care team, the case is completely different in our opinion since she can no longer breathe without mechanical ventilation.

  • After suffering a cardio respiratory attack at the end of June, as a secondary effect of her genetic disease, it is possible that at the beginning of summer, the recommendation to cut off the respirator, which was keeping her alive, was made hastily and without compassion.
  • Nonetheless, the role of medicine is not to keep seriously-ill and unconscious patients artificially alive for months on end, by mechanically forcing their respiratory function.
  • Furthermore, once the patient’s condition has been stabilized, and if his health permits, he will breathe spontaneously once the respirator is disconnected.
  • Therefore, in principle it is not an act of euthanasia, since the objective is not to cause death, but rather to stop treatment which has become unreasonably overzealous, and which is inappropriate to impose on the person to delay death. If the long-term respiratory maintenance virtually prevents a patient from dying, it can be qualified as abusive and overzealous care.

According to the law dated April 22, 2005 regarding rights for the sick and those at the end-of-life, care is qualified as “overzealous” when medical procedures “appear useless, disproportionate or when they have no effect except that of maintaining artificial life “.

The difference between stopping a respirator versus stopping nutrition and/or hydration may seem to be a rather tenuous and fine line but, for us and our medical advisors, it is crucial, if the medical practice wants to remain on the cutting edge of appropriate treatment, that is “Neither disproportionate treatment, nor euthanasia”.