Case-law of the European Court of Human Rights (ECHR: it is an international court set up in 1959. It rules on individual or State applications alleging violations of the civil and political rights set out in the European Convention on Human Rights of 1950) End of Life and the European Convention on Human Rights: CASE OF LAMBERT AND OTHERS v. FRANCE (Application no. 46043/14) Judgment of 5 June 2015 (Grand Chamber)

Case-law of the European Court of Human Rights The facts: The applicants are the parents, a half-brother and a sister of Vincent Lambert who sustained a head injury in a road-traffic accident in 2008, as a result of which he is tetraplegic (i.e. a form of paralysis resulting in partial or complete loss of usage of body), in a chronic neuro-vegetative or minimally conscious state. Vincent Lambert receives artificial nutrition and hydration, which is administered via a gastric tube. They complained in particular about the judgment delivered on 24 June 2014 by the French Conseil d’État which, relying on, among other things, a medical report drawn up by a panel of three doctors, declared lawful the decision taken by the doctor treating Vincent Lambert, to discontinue his artificial nutrition and hydration.

Case-law of the European Court of Human Rights It is worthwhile recalling the peculiar assessment of the medical team based inter alia on the fact that: Vincent Lambert reacted to the care provided and to painful stimuli, but concluded that these were non‑conscious responses. In their view, it was not possible to interpret them as conscious awareness of suffering or as the expression of any intent or wish with regard to the withdrawal or continuation of treatment. The experts found that Vincent Lambert’s clinical condition corresponded to a vegetative state, without any signs pointing to a minimally conscious state. Furthermore, they stressed that he had difficulty swallowing and had seriously impaired motor functions of all four limbs, with significant retraction of the tendons. They noted that his state of consciousness had deteriorated since the assessment carried out in 2011.

Case-law of the European Court of Human Rights Moreover, in its judgment of 24 June 2014, the Conseil d’État found, in the light of the testimony of Vincent Lambert’s wife and one of his brothers and the statements of several of his other siblings, that Dr Kariger had correctly interpreted the wishes of not living under such conditions, expressed by the patient before his accident. The applicants submitted in particular that withdrawing his artificial hydration and nutrition would be contrary to the State’s obligations under Article 2 (right to life) of the European Convention on Human Rights and that this would amount to torture within the meaning of Article 3 (Prohibition of torture or inhuman or degrading treatment) of the Convention and would infringe his physical integrity, in breach of Article 8 (Right to respect for private and family life) of the Convention.

Case-law of the European Court of Human Rights For the reasons mentioned above, the Court stated that the applicants do not have standing to raise the complaints under Articles 2, 3 and 8 of the Convention, in the name and on behalf of Vincent Lambert. In addition, the Court held that there would be no violation of Article 2 (right to life) of the European Convention on Human Rights in the event of implementation of the Conseil d’État judgment of 24 June 2014. It observed in particular that there was no consensus among the Council of Europe member States in favour of permitting the withdrawal of life-sustaining treatment. In that sphere, which concerned the end of life, States must be afforded a margin of appreciation.

Case-law of the European Court of Human Rights The Court considered that the provisions of the Act of 22 April 2005 (loi relative aux droits des maladies et à la fin de vie, so-called “Loi Leonetti”) as interpreted by the Conseil d’État, constituted a legal framework which was sufficiently clear to regulate with precision the decisions taken by doctors in situations such as that in the present case. The Court was further keenly aware of the importance of the issues raised by the present case, which concerned extremely complex medical, legal and ethical matters. In the circumstances of the case, the Court reiterated that it was primarily for the domestic authorities to verify whether the decision to withdraw treatment was compatible with the domestic legislation and the Convention, and to establish the patient’s wishes in accordance with national law.

Case-law of the European Court of Human Rights The Court’s role consisted in examining the State’s compliance with its positive obligations flowing from Article 2 of the European Convention on Human Rights. The Court found the legislative framework laid down by domestic law, as interpreted by the Conseil d’État, and the decision-making process, which had been conducted in meticulous fashion, to be compatible with the requirements of Article 2. The Court reached the conclusion that the present case had been the subject of an in-depth examination in the course of which all points of view could be expressed and that all aspects had been carefully considered, in light of both a detailed expert medical report and general observations from the highest-ranking medical and ethical bodies.

Case-law of the European Court of Human Rights In the dissenting opinion of 5 judges, the following aspects were raised: They question the “lack of convergence” argument raised by the Court, according to which the national decisions contested by the applicants were based on “the certainty that Vincent Lambert would not have wished to be kept alive under the conditions in which he now finds himself”. Therefore, the applicants intentions would allegedly conflict with the patient’s interests. This statement would be correct only if the applicants alleged a violation of Vincent Lambert’s right to personal autonomy under Article 8 of the Convention (which according ECHR past case-law includes the individual’s right to decide in which way and at which time his or her life should end)

Case-law of the European Court of Human Rights However, the applicants do invoke Article 8 but in a completely different context; it is Vincent Lambert’s physical integrity, and not his personal autonomy, that they seek to defend before the Court. Their main complaints raised on behalf of Vincent Lambert are based on Articles 2 and 3 of the Convention. Article 3 guarantees a positive right not to be subjected to ill- treatment, but no “right” whatsoever to waive this right and to be, for example, starved to death. As a consequence, “The right not to be starved to death” being the only right that Vincent Lambert himself could have validly claimed under Articles 2 and 3, it is logically impossible to find any lack of “convergence of interests” between him and the applicants in the present case, or even entertain the slightest doubt on this point.

Case-law of the European Court of Human Rights Hence, according to the dissenting judges, the applicants did have standing to act in the name and on behalf of Vincent Lambert, and that their respective complaints should have been declared compatible with the provisions of the European Convention on Human Rights. Vincent Lambert is, according to the available evidence, in a persistent vegetative state, with minimal, if any, consciousness. He is not, however, brain dead – there is a failure of function at one level of the brain but not at all levels. In fact, he can breathe on his own (without the aid of a life- support machine) and can digest food (the gastro-intestinal tract is intact and functioning), but has difficulty in swallowing, in moving solid food down the oesophagus. More critically, there is no evidence that he is in pain (as distinguished from the evident discomfort of being constantly in bed or in a wheelchair).

Case-law of the European Court of Human Rights From the evidence submitted before this Court, enteral feeding involves minimal physical invasion, causes the patient no pain, and, with minimal training, such feeding can continue to be administered by the family or relatives of Mr Lambert (and the applicants have offered to do so) Vincent Lambert is alive and being cared for in a way that is proportionate to his health condition. He is also being fed – and food and water are two basic life- sustaining necessities, and are intimately linked to human dignity.

Case-law of the European Court of Human Rights Reproductive rights and the European Convention on Human Rights: Embryo donation and scientific research Grand Chamber judgment of 27 August 2015 in the case of Parrillo v. Italy (application no. 46470/11) The facts: The applicant, Adelina Parrillo, is an Italian national who was born in 1954 and lives in Rome (Italy). In 2002 Ms Parrillo and her partner had resorted to assisted reproduction techniques and underwent in vitro fertilisation treatment. Five embryos were obtained and stored by cryopreservation.

Case-law of the European Court of Human Rights Ms Parrillo’s partner died in November 2003, before the embryos could be implanted. After deciding not to go ahead with a pregnancy, she sought to donate them to scientific research However, section 13 of Law no. 40/2004 of 19 February 2004 prohibits experiments on human embryos, even for the purposes of scientific research, making any such experiment punishable by a sentence of between two and six years’ imprisonment Ms Parrillo’s requests for the release of her embryos for this purpose were therefore refused.

Case-law of the European Court of Human Rights Complaints: Under Article 1 of Protocol No. 1 (protection of property) of the European Convention, Ms Parrillo complained that she was unable to donate her embryos, conceived through medically assisted reproduction, to scientific research and was obliged to keep them in a state of cryopreservation until their death. Ms Parrillo also considered that the prohibition in question amounted to a violation of her right to respect for her private life, protected by Article 8. On 28 January 2014, the Chamber to which the case had been assigned relinquished jurisdiction in favour of the Grand Chamber

Case-law of the European Court of Human Rights Decision of the Court: For the first time, the Court was called upon to rule on the question whether the “right to respect for private life” could encompass the right to make use of embryos obtained from IVF for the purposes of donating them to scientific research The Court, noting that the embryos obtained through IVF contained the genetic material of the person in question and accordingly represented a constituent part of his or her identity, concluded that Ms Parrillo’s ability to exercise a choice regarding the fate of her embryos concerned an intimate aspect of her personal life and accordingly related to her right to self-determination. It therefore concluded that Article 8 was applicable in this case.

Case-law of the European Court of Human Rights On the legitimacy of the aim pursued by the interference in Ms Parrillo’s private life: According to the Italian Government, this interference, provided for in Law no. 40/2004, pursued the aim of protecting the “embryo’s potential for life”, as the human embryo is considered in the Italian legal system as a subject of law entitled to the respect due to human dignity The Court considered that Italy was to be afforded a wide margin of appreciation in this case, which raised sensitive moral and ethical issues. In addition, it did not concern prospective parenthood, and the right invoked by Ms Parrillo was not one of the core rights protected by Article 8, as it did not concern a crucial aspect of her existence and identity.

Case-law of the European Court of Human Rights This need for a wide margin of appreciation was confirmed by: the lack of a European consensus on this subject international texts Particularly, the Court noted that there was no European consensus on the delicate question of the donation of embryos not destined for implantation: Although certain member States had adopted a permissive approach in this area, others had chosen to prohibit it or to impose strict conditions on research using embryonic cells

Case-law of the European Court of Human Rights Lastly, the Court noted that: there was no evidence that Ms Parrillo’s deceased partner (who had had the same interest in the embryos in question as the applicant at the time of the IVF) would have wished to give the embryos to science. Therefore: Italy had not overstepped the wide margin of appreciation enjoyed by it in this case and that the ban in question had been “necessary in a democratic society”. In consequence, there had been no violation of Article 8. With regard to Article 1 of Protocol No. 1 (protection of property), the Court considered that it did not apply to the present case, since human embryos could not be reduced to “possessions” within the meaning of that provision. This complaint was accordingly dismissed.

Solving real-life bioethical dilemmas A practical case: Minors (Application of Art. 6 (Consent) of the UNESCO Universal Declaration of Bioethics and Human Rights) JB, a 5 year old girl, is brought to hospital by her parents with symptoms of fever and weakness. Upon further examination acute lymphocytic leukemia (ALL) is suspected, but a bone biopsy is required to confirm the diagnosis. The parents are informed of the procedure for the “bone marrow pin-prick” and give their consent. When a diagnosis of ALL is confirmed, the standard chemotherapy treatment is explained to the parents as well as the probable prolongation of life for a few years. On realizing the cost involved in this treatment and that “success” is not guaranteed, the parents are distraught and feel it is not worth continuing treatment. An Opinion of the clinical ethics committee is requested by the medical team.

Solving real-life bioethical dilemmas In analysing this case, you should focus on: The principle of informed consent in this specific context (i.e. what do we mean by “informed” and “consent”?) What is the relevant informed consent process? Should any kind of exception to this principle apply to the present case?