E.B. v. X

E.E., an adult, was in a car accident in 1992. As a result of this accident, she entered into an irreversible vegetative coma. E.E. was not clinically dead, defined as the “irreversible  cessation  of  all  encephalon  functions,” but was clinically in a permanent vegetative state (PVS). She was kept alive through force-feeding by means of a nasogastric tube.

Three friends of E.E. reported that shortly before her accident, E.E. had visited a friend who was in a coma following a car accident, and said that she preferred the situation of a boy who died instantly in the same accident to that of her friend. E.E.’s teachers reported the same statements.

E.B., E.E.’s father, was made the guardian of E.E. As guardian, E.B. petitioned the   Tribunal of Lecco to end E.E.’s force feeding. Advocate X was appointed as E.E.’s guardian ad litem and agreed with E.B.’s petition. The Tribunal held on 2 February 2006 that E.B.’s petition was inadmissible as neither E.B. nor the guardian ad litem were entitled to represent E.E. The guardian appealed to the Court of Appeal of Milan, which on 16 December 2006, found the appeal admissible because of the presence of the guardian ad litem but rejected E.B.’s petition on the merits with the position that as E.E. was still alive, her right to life trumped E.B.’s assertion of her rights to self-determination or dignity. E.B. appealed to the Court of Cassation with the guardian ad litem cross-appealing.

The Court held that a judge may allow the removal of a nasogastric tube that is keeping artificially alive someone in a PVS for many years if there was no medical foundation for the possibility of recovery and a truly expressive request is made by the represented person based on personality, lifestyle and convictions regarding their dignity. The case was remanded to determine if E.E. had made a truly expressive request.

The Court ruled that someone in a PVS retains all rights, including the right to life and the right to health care. The right to health care includes informed consent. Informed consent is the basis for the doctor-patient relationship and includes the ability to choose and refuse therapy. There are only a few statutorily defined situations where health treatments would be compulsory. A doctor must therefore respect the informed, authentic refusal of treatment expressed by a competent person or by their legal representative.

The Court also ruled that a legal guardian did not have an unconditional power over the health choices of the person in PVS because of the highly personal nature of the right to health. A legal guardian must act in the “exclusive interest of the incompetent person” and make decisions "with" the incompetent person.

The Court distinguished refusal of treatment from euthanasia as refusal of treatment allowed an illness to follow its natural course and did not accelerate it.

"Ove  il  malato  giaccia  da  moltissimi  anni  (nella  specie,  oltre  quindici)  in  stato  vegetativo permanente,  con  conseguente  radicale  incapacità  di  rapportarsi  al  mondo  esterno,  e  sia  tenuto artificialmente  in  vita  mediante  un  sondino  nasogastrico  che  provvede  alla  sua  nutrizione  ed idratazione, su richiesta del tutore che lo rappresenta, e nel contraddittorio con il curatore speciale, il giudice può autorizzare la disattivazione di tale presidio sanitario (fatta salva l'applicazione delle misure  suggerite  dalla  scienza  e  dalla  pratica  medica  nell'interesse  del  paziente),  unicamente  in presenza dei seguenti presupposti: (a) quando la condizione di stato vegetativo sia, in base ad un rigoroso  apprezzamento  clinico,  irreversibile  e  non  vi  sia  alcun  fondamento  medico,  secondo  gli standard  scientifici  riconosciuti  a  livello  internazionale,  che  lasci  supporre  la  benché  minima possibilità di un qualche, sia pure flebile, recupero della coscienza e di ritorno ad una percezione del  mondo esterno; e (b) sempre che tale istanza sia realmente espressiva, in base ad elementi di prova chiari,  univoci  e  convincenti,  della  voce  del  paziente  medesimo,  tratta  dalle  sue  precedenti dichiarazioni  ovvero  dalla  sua  personalità,  dal  suo  stile  di  vita  e  dai  suoi  convincimenti, corrispondendo al suo modo di concepire, prima di cadere in stato di incoscienza, l'idea stessa di dignità  della  persona.  Ove  l'uno  o  l'altro  presupposto  non  sussista,  il  giudice  deve  negare l'autorizzazione,  dovendo  allora  essere  data  incondizionata  prevalenza  al  diritto  alla  vita, indipendentemente  dal  grado  di  salute,  di  autonomia  e  di  capacità  di  intendere  e  di  volere  del soggetto interessato e dalla percezione, che altri possano avere, della qualità della vita stessa."

"il carattere personalissimo del diritto alla salute dell'incapace comporta che il riferimento all'istituto della rappresentanza legale non trasferisce sul tutore, il quale è investito di una  funzione  di  diritto  privato,  un  potere  incondizionato  di  disporre  della  salute  della  persona  in stato di totale e permanente incoscienza."