Alex RKThe decision of the European Court of Human Rights in Pindo Mulla v Spain [2024] ECHR 753 is a very significant case about the interplay between Articles 2 and 8 ECHR in the context of the refusal of medical treatment.
Ms Pindo was a Jehovah’s Witness, living in Spain.[1] Following medical tests carried out between May to July 2017, Ms Pindo Mulla was advised to have surgery. She subsequently issued two documents – an advance directive, and a lasting power of attorney – each recording her refusal to undergo a blood transfusion of any kind in any healthcare situation, even if her life was in danger, but that she would accept any medical treatment that did not involve the use of blood. The applicant indicated that she carried the lasting power of attorney document on her person. The advance medical directive was deposited in the official Register of Advance Directives of Castile and Leon and was accessible to Soria hospital via the electronic system used by health professionals in the region. Under the legal framework in Spain, advance directives deposited in the regional registers are to be copied within 7 days to the National Register of Advance Directives, so as to be accessible to health care providers throughout the country.
On 6 June 2018, Ms Pindo Mulla was admitted to Soria Hospital with serious internal bleeding, causing severe anaemia. That evening, a doctor spoke to her about receiving a blood transfusion, which she refused. She expressed her refusal in an informed consent document, which she and the doctor both signed. The document became part of the applicant’s medical file at Soria hospital.
The following day, due to haemorrhaging, she was transferred by ambulance to a hospital in Madrid known for its capacity to provide alternative forms of treatment to blood transfusions. She agreed to the transfer, her understanding being that she could be treated there without resort to blood transfusion. She was accompanied by a doctor with her medical records.
During the journey, the doctor warned the doctors at the hospital in Madrid that her condition was very serious. In light of this warning, anaesthesiologists at that hospital contacted the duty judge for instructions on what to do when she arrived. They indicated that she was a Jehovah’s Witness, that she had verbally expressed her refusal of all types of treatment and that her condition would be very unstable upon arrival. The duty judge, who did not know the identity of the patient, nor her precise wishes, transmitted the doctors’ request to a forensic doctor and to the local prosecutor and requested their opinion. Within approximately an hour, based on the information received and those opinions, the duty judge authorised all medical or surgical procedures that were needed to save her life.
Treating the situation as an emergency, the usual consent protocol was not followed at the hospital. Surgery was performed that day and three transfusions of red blood cells were administered to Ms Pindo Mulla, who had not been informed of the duty judge’s order, despite it having been arranged during her journey to the hospital when it was recorded that “she was conscious, orientated and cooperative”, and despite still being fully conscious, as noted in her records, when she was taken to the operating theatre. The applicant, who believed that she was to undergo treatment without blood transfusions, did not reiterate her refusal or refer to any written document stating that refusal. She learned of the precise surgery carried out and of the transfusions the day after the operation.
Ms Pindo Mulla brought proceedings in the national courts, out of principle, to overturn the decision. The decision was upheld on appeal, and her subsequent appeal was declared inadmissible by the Constitutional Court.
Somewhat unusually, her application to the European Court of Human Rights was heard by the Grand Chamber in the first instance (a step which normally takes place in relation to an issue identified by the court as being of particular, wider, significance). Whilst Ms Pindo Mulla relied upon both Article 8 (right to respect for private and family life) and Article (right to freedom of conscience and religion), both she, and her the court, ultimately focused on Article 8.
In the course of a long judgment, the Grand Chamber set out an important series of general propositions, before turning to the application of those propositions to the facts of her case. The Grand Chamber focused, in particular, on the necessity of justification for the interference with her rights under Article 8 ECHR, as follows:
– On personal autonomy in the sphere of health care
137. It has long been recognised by the Court that the right to respect for private life encompasses personal autonomy. As stated in the Pretty case, cited above, this is an important principle underlying the interpretation of the guarantees of Article 8 (at § 61; see also Lambert and Others, cited above, § 142). That judgment refers to personal autonomy as the right to make choices about one’s body (at § 66; see also Nicolae Virgiliu Tănase v. Romania [GC], no. 41720/13, § 126, 25 June 2019).
138. In the sphere of health care, respect for personal autonomy is a general and fundamental principle. It is safeguarded notably by the universally recognised rule of free and informed consent. The legally competent patient who has been duly informed about his or her health condition and the available treatments, as well as the implications if no treatment is accepted, has the right to freely decide whether to give consent to treatment or to withhold it (see Article 5 of the Oviedo Convention and paragraphs 34-35 of its explanatory report, Article 3 of the Charter of Fundamental Rights of the European Union, and Article 6 of the Universal Declaration on Bioethics and Human rights, all quoted above). The Court has decided a number of cases involving the issue of consent to medical treatment, which mostly focussed on the need to ensure that the patient is placed in a position to take an informed decision about his or her health care (see as an early authority Trocellier v. France(dec.), no. 75725/01, ECHR 2006-XIV, and more recently Mayboroda, cited above, § 52, with further references). Another aspect that the Court has examined is whether the consent procedure laid down in the law of the respondent State was correctly followed. In this respect, the Court has stated that even if the Convention does not lay down any particular form of consent, where certain requirements are imposed by domestic law, these must be fulfilled; if they are not, an adequate and effective response to the patient’s complaint is required from the domestic system (see Reyes Jimenez, cited above, §§ 36-38.
139. As for the refusal of treatment, in Pretty the Court stated that while this might lead to a fatal outcome, the imposition of medical treatment without the consent of a mentally competent adult patient would interfere with a person’s physical integrity in a manner capable of engaging the rights protected under Article 8 § 1 of the Convention (at § 63; see also Lambert and Others, cited above, § 180).
140. The right to refuse medical treatment, specifically the religious objection to blood transfusion, featured in the cases Jehovah’s Witnesses of Moscow and Others v. Russia (cited above) and Taganrog LRO and Others v. Russia (nos. 32401/10and 19 others, 7 June 2022). As the respondent Government and the intervening Government have pointed out, the context of those cases was very different to that of the present one. They involved the dissolution and banning of Jehovah’s Witness organisations in Russia. Consequently, the Convention rights at issue were different, notably those of freedom of association and freedom of religion. The right of the patient to refuse medical treatment was not directly addressed as such. Even so, these judgments may be recalled here inasmuch as they affirm, in relation to Jehovah’s Witness beliefs, the principles set out in Pretty. In Jehovah’s Witnesses of Moscow and Others, the Court stated that the freedom to accept or refuse specific medical treatment was vital to self-determination and personal autonomy. A competent adult patient was free to decide on surgery or medical treatment, including blood transfusion. It referred to cases decided in various jurisdictions concerning the refusal of blood by Jehovah’s Witnesses in which the position taken was that although the public interest in protecting the life and health of patients was legitimate and very strong, the interest of patient autonomy was stronger still, and that free choice and self-determination were themselves fundamental constituents of life. The Court also observed that in the absence of any need to protect third parties, the State had to abstain from interfering with the individual’s freedom of choice regarding health care (see § 136; see also Taganrog LRO and Others, cited above, § 162).
– On the duty of the State to protect the life and health of patients
141. As the Court has often affirmed, the Convention must be read as a whole (see, among many authorities, Haas, cited above, § 54, and Lambert and Others, cited above, § 142). Given that in the present case the applicant was assessed as facing an imminent danger to her life, it is necessary to have regard to the principles that the Court has derived regarding the Contracting Parties’ duty to safeguard patients. Thus, in Lopes de Sousa Fernandes, cited above, it was stated that the Contracting States’ substantive positive obligation under Article 2 requires that they enact regulations compelling public and private hospitals to adopt appropriate measures for the protection of patients’ lives (at §§ 166 and 186). A parallel duty has been derived from Article 8 with respect to patients’ physical integrity (see Mayboroda, cited above, § 51).
142. In addition, as already noted (see paragraph 125 above), the principles set out in certain cases that concerned end-of-life situations are not, despite the very different subject-matter, devoid of relevance for the present case. The Court emphasised there the necessity of robust legal and institutional safeguards in the relevant decision-making process so as to ensure that a decision of such consequence is explicit, unambiguous, free and informed. The person has to be truly conscious of the implications of what they are asking for and must be protected against pressure and abuse (see in particular Mortier, cited above, at §§ 139 and 146).
143. The Court has also adverted to the importance of establishing that the patient still has the capacity to take such a decision, if there are circumstances that may give rise to doubt in this regard. The case of Arskaya v. Ukraine (no. 45076/05, 5 December 2013) involved a complaint under Article 2 about the failure to protect the life of the applicant’s adult son, who died following his persistent refusal of the necessary treatment for a serious respiratory illness. At the time, the deceased had shown signs of mental disorder, but his refusals had nevertheless been taken at face value by the doctors treating him. The Court considered that, from the standpoint of Article 2, a clear stance should have been taken by the medical staff regarding the validity of the deceased’s refusal of life-saving treatment so as to remove the risk that that decision was made without a full understanding of its implications. It pointed to the need for sufficient guarantees in this respect, and for a regulatory framework which adequately ensures that, where necessary, a patient’s decision-making capacity can be promptly and objectively established via a fair and proper procedure (see Arskaya, cited above, 88).
– On procedural safeguards
144. Finally, while Article 8 does not contain any explicit procedural requirements, it is important for the effective enjoyment of the rights guaranteed by this provision that, where decisions are taken that impinge upon a person’s private life, the decision-making process is fair and such as to afford due respect for the interests safeguarded by it. In this regard the Court examines whether, in light of the particular circumstances of the case and notably the nature of the decision to be taken, the person affected has been sufficiently involved in the decision-making process, seen as a whole, to afford them the requisite protection of their interests (see R.R. v. Poland, no. 27617/04, § 191, ECHR 2011 (extracts)). Such an examination allows the Court to satisfactorily assess whether the reasons adduced by national authorities to justify their decisions were “sufficient” for the purposes of Article 8 § 2 (see Fernández Martínez v. Spain[GC], no. 56030/07, § 147, ECHR 2014 (extracts)).
145. Furthermore, in the authorities referred to above, Lopes de Sousa Fernandes and Mayboroda, the Court stated that the obligation to put in place a regulatory framework protecting patients must be understood in a broader sense which includes the duty to ensure the effective functioning of that framework. The regulatory duties thus encompass necessary measures to ensure implementation, including supervision and enforcement (Lopes de Sousa Fernandes, cited above, § 189, Mayboroda, cited above, § 53).
The court then set out how to reconcile the different rights and duties at stake, noting that it had not yet had the opportunity in its practice how this was to be done in an emergency situation.
146. […] It would commence by affirming the position that comes through clearly in its existing case-law in relation to patient autonomy, namely that in the ordinary health care context it follows from Article 8 of the Convention that the competent, adult patient has the right to refuse, freely and consciously, medical treatment notwithstanding the very serious, even fatal, consequences that such a decision might have. It is a cardinal principle in the sphere of health care that the right of the patient to give or withhold consent to treatment has to be respected. As important as that right is, however, its location within the scope of Article 8 means that it is not to be construed in absolute terms. The right to respect for private life, being the broader right that encompasses patient autonomy, is a qualified right. The exercise of any facet of that right may therefore be limited in accordance with the second paragraph of Article 8 (see for example Pretty, cited above, § 70).
147. In a situation involving real and imminent danger for an individual’s existence, the right to life will also be in play, in tandem with the individual’s right to decide autonomously on medical treatment. From the perspective of the State, its duties to ensure respect for both of these rights will likewise be engaged, that is to say its duties deriving from Article 8 and Article 2 of the Convention. Concerning the latter provision, the Court reiterates that the right to life ranks as one of the most fundamental provisions in the Convention and also enshrines one of the basic values of the democratic societies making up the Council of Europe. It requires the State not only to refrain from the “intentional” taking of life, but also take appropriate steps to safeguard the lives of those within its jurisdiction (see Lopes de Sousa Fernandes, cited above, § 164, and also Lambert and Others, cited above, § 117).
148. While it was stated in Jehovah’s Witness of Moscow and Others that the public interest in preserving the life or health of a patient must yield to the patient’s interest in directing the course of his or her own life, the Court also acknowledged that the authenticity of refusal of medical treatment is a legitimate concern, given that the patient’s health and possibly life itself are at stake (see § 138 of that judgment). This is consistent with the requirement that the Court has derived from Article 2 for robust legal safeguards and sufficient guarantees where the patient’s very life is at stake, referred to at paragraphs 142-143 above. What must be ensured is that, in an emergency situation, a decision to refuse life-saving treatment has been made freely and autonomously by a person with the requisite legal capacity who is conscious of the implications of their decision (see Article 5 of the Oviedo Convention and paragraph 34 of the explanatory report in relation to this provision, set out at paragraph 72 above). It must also be ensured that the decision – the existence of which must be known to the medical personnel – is applicable in the circumstances, in the sense that it is clear, specific and unambiguous in refusing treatment, and represents the current position of the patient on the matter (see Article 9 of the Oviedo Convention and paragraph 62 of the explanatory report in relation to this provision, set out at paragraph 72 above; see also the Arskaya case, cited above, at § 88).
Drawing the threads together, this meant that:
149. It follows that where in an emergency there are reasonable grounds to doubt the individual’s decision in any of these essential respects, it cannot be considered a failure to respect his or her personal autonomy to proceed with urgent, life-saving treatment. The Court observes that this position is fully in harmony with Article 8 of the Oviedo Convention, which permits in an emergency situation an exception, that must be narrowly construed, to the general rule of consent. It also follows from the weight to be accorded to respecting the patient’s autonomy that reasonable efforts should be made to dispel the doubt or uncertainty surrounding the refusal of treatment. As the Court has previously observed, albeit not in the same context, the wishes of the patient must be treated as being of paramount importance (see Lambert and Others, cited above, § 147). The text of Article 8 of the Oviedo Convention does not further elaborate on what is required in such circumstances. In relation to this provision the explanatory report underlines the need for health care professionals “to make every reasonable effort to determine what the patient would want”. What constitutes a “reasonable effort” will necessarily depend on the circumstances of the case and may also be influenced by the content of the domestic legal framework.
150. Where, despite reasonable efforts, the physician – or the court, as the case may be – is unable to establish to the extent necessary that the patient’s will is indeed to refuse life-saving medical treatment, it is the duty to protect the patient’s life by providing essential care that should then prevail.
The court also addressed the weight to be placed upon the previously addressed wishes of the patient:
151. The Court refers to Article 9 of the Oviedo Convention, according to which the previously expressed wishes of a patient who is not, at the time of the intervention, in a position to express his or her wishes “shall be taken into account”. As stated in the corresponding passage of the explanatory report to this treaty, it was not intended that such wishes must be automatically followed in all circumstances. It is acknowledged that there may be a need to verify that wishes previously expressed remain applicable and valid in a given situation (see paragraph 62 of the explanatory report, set out above; see also the World Medical Association’s Statement on Advance Directives, quoted at paragraph 80 above).
152. The Oviedo Convention does not enter any further into the arrangements that States must or may make with respect to previously expressed wishes. Nor does Article 8 of the Convention. While the principal institutions of the Council of Europe have taken positions in favour of advance directives and continuing powers of attorney in the medical sphere, the Court notes that, in keeping with their non-binding nature, these positions contemplate considerable discretion for States regarding the status of and the modalities in relation to such instruments.
153. In the Court’s view, the aforementioned texts reflect both the complexity and the sensitivity that attach to the introduction and operation of a system of advance medical directives (and similar instruments). As found by the comparative survey that was completed for the purposes of the present case, while a considerable number of Council of Europe member States have specific provisions and arrangements in place for advance medical directives, or for taking into account previously expressed wishes, they have not done so in a uniform manner. In the other States surveyed, domestic law does not include provisions dealing specifically with the previously expressed wishes of patients regarding medical treatment. Therefore, it appears that there is a diversity of practice in Europe when it comes to the modalities for reconciling as far as possible the right to life and the right to respect for the autonomy of the patient by taking account of previously expressed wishes. In light of the above considerations, the Court takes the view that both the principle of giving binding legal effect to advance directives, as well as the related formal and practical modalities, come within the margin of appreciation of the Contracting States.
On the facts of Ms Pindo Mulla’s case, the Grand Chamber noted that the “domestic framework for ensuring that patient autonomy is respected within the Spanish health system appears to be a well-developed one, and its features as such have not been criticised by the applicant. Indeed, it can be said to represent a judicious balancing by the legislature between the fundamental rights of patients, the corresponding duties of the State and weighty public interests” (paragraph 172). However, the framework went wrong in her case:
181. The Court fully appreciates that the actions taken in relation to the applicant on the day in question by the staff of both hospitals were motivated by the overriding concern to ensure the effective treatment of a patient who was under their care, in keeping with the most fundamental norm of the medical profession. It does not question their assessments regarding the severity of the applicant’s condition at the time, the urgency of the need to treat her, the medical options available in the circumstances, or that the applicant’s life was saved that day.
182. However, the authorisation by the duty judge to proceed with whatever treatment was considered necessary resulted from a decision-making process that was affected by the omission of essential information about the documenting of the applicant’s wishes, which had been recorded in various forms and at various times in writing. Since neither the applicant nor anyone connected with her was aware of the decision taken by the duty judge, it was not possible, even in theory, to make good that omission. Neither this issue, nor the issue of her capacity to take a decision,[2] were addressed in an adequate manner in the subsequent proceedings. In light of this, it cannot be said that the domestic system adequately responded to the applicant’s complaint that her wishes had been wrongly overruled.
The Grand Chamber identified that “what occurred in this case has caused the applicant significant distress. The Court therefore considers it appropriate to make an award of compensation for non-pecuniary damage” (paragraph 189), awarding her 12,000 euros.
A concurring judgment from Judge Elósegui sought to identify particular features that were required to avoid such a problem arising again in Spain. A concurring judgment from Judges Ktistakis (joined by Judge Mourou-Vikström) regretted that the Grand Chamber had not taken the opportunity “to affirm with clarity the principles of self-determination and personal autonomy.” Judge Ktisakis noted that “a pivotal aspect of the (rather paternalistic) perspective in the present assessment is the “appearance” of Article 2 of the Convention and the positive obligations on States,” and regretted the prioritising of the judgment of Lopes de Sousa Fernandes v. Portugal over the previous judgments relating to Jehovah’s Witnesses, which placed much more weight on Articles 8 / 9. Several of the judges also joined in partly consenting / partly dissenting judgments as to whether the award of damages should have been made.
Comment
This case makes entirely clear, should there be any doubt, that the European Court of Human Rights considers:
- That mental capacity is a valid concept, contrary to the position adopted by the UN Committee on the Rights of Persons with Disabilities.[3]
- That reliance upon the presumption of capacity is entirely wrong where there are reasons to doubt that the patient has the capacity to make decisions about life-sustaining treatment.
- That Articles 2 and 8 require to be balanced, and that balancing act is particularly difficult in the emergency situation.
- That things start to go wrong very quickly, and very badly, if there are inadequate systems in place to make sure that wishes expressed in advance (no matter the basis upon which they are based) are recorded and brought to the attention of those who need to know them at the right time.
[1] The facts here are largely taken from the press release of the court.
[2] Earlier, at paragraph 177, the court noted that: “[t]he question whether the applicant had the capacity to do so was a crucial one, given that there was an advance medical directive on record to ensure that her refusal of blood transfusion would remain operative in the event of her being unable to take such a decision at the relevant point in time according to Spanish law. Yet that issue was not put to the judge at the outset. While it was alluded to by the forensic doctor during the consideration of the application, it was not expressly addressed in the decision that was given. Rather, it was implicitly answered in the negative with the authorisation that was given to proceed directly with the necessary treatment without needing to obtain consent”
[3] Despite the extensive references to conventions / recommendations other than the ECHR, the CRPD did not feature at all in the judgment, which perhaps reflects the fact that Ms Pindo Mulla was not identifying herself as disabled. There is an interesting question as to whether, given the expansive definition of disability for purposes of the CRPD, she should have been identified as been.
