Alex RKIn Karsai v Hungary [2024] ECHR 516, the European Court of Human Rights has made clear that, whatever the current political head of steam behind moves towards legalising assisted dying / assisted suicide, there is only limited judicial appetite to frame it as a matter of rights.
Mr Karsai, a leading human rights lawyer in Hungary, has motor neurone disease (or ALS as it is known elsewhere). He unsuccessfully challenged the ban in Hungary on obtaining what was described in the judgment as some form of physician assisted dying (it is not entirely clear from the judgment whether he wished to receive assistance, but take the final step himself, or to be administered the lethal medication himself. He brought his challenge to Strasbourg, and, unsurprisingly, sought to raise every argument that he could to challenge the Hungarian ban by reference to the ECHR. In a submission which may well be thought to chime with what is often read in the media,
96. The applicant pointed out that over twenty years had passed since the judgment in Pretty(cited above). Referring to the judgments in Haas and Mortier(both cited above), the applicant argued that the case-law of the Court had evolved, as had the legislation in many member States, which increasingly recognised the right to make end-of-life decisions. Referring to recent judgments in Italy, Germany, Austria and Canada, and to the legislation in the countries where assisting suicide had been decriminalised through a legislative process, the applicant argued that there was an emerging consensus in the Euro-Atlantic legal space on the disproportionate nature of the absolute ban on all forms of assisted suicide with respect to terminally ill patients who were fully mentally competent but unable to terminate their life without help. In his submission, the European consensus was reflected also in the attitude and acceptance of PAD by the general population and the medical profession. The applicant referred to the results of several opinion polls on the extent of public acceptance of PAD in Hungary.
Interestingly (and unusually), the court heard from two experts; a palliative care expert and a bioethics expert, as well as considering submissions from the Italian government, as well as bodies arguing both in favour and against assisted dying. The court also undertook a review of comparative law across the Council of Europe and further afield, including reviewing cases decided domestically in England & Wales, Germany, Italy and Canada.
The Government of Hungary sought to argue that Mr Karsai’s case was inadmissible, on the basis that there was no right to self-determined death under the ECHR, and the Article 8 did not apply, as the question of the prosecution of third parties who might wish to assist him did not touch upon his own interests. The Court had little truck with this argument, finding that his:
87. […] complaint falls to be examined as concerning an aspect of the applicant’s right to respect for his private life within the meaning of Article 8. As regards the question whether this Article goes so far as to require the respondent State to allow or provide the applicant a certain form of PAD, this is a matter which can be resolved only through an examination on the merits, with due regard to the conflicting considerations and the State’s margin of appreciation.
When it came to the merits of the case, the ECtHR first asked itself whether the case involved the State’s negative and / or positive obligations. Negative obligations are (in essence) rights not to have things done to you by the State (for instance, a right not to be tortured). Positive rights are (in essence) things that you can demand from the State. It noted that anyone who provided Mr Karsai with assistance to die in Hungary, or to a Hungarian national abroad, could be punished under Hungarian criminal law. On the fact of it, therefore, this appeared to be a situation where his right to respect for private life under Article 8 ECHR was being interfered with – i.e. this was a case purely about negative rights. Importantly, however, the court continued:
136. This being stated, the Court notes that the applicant himself argued that the State should be under a positive obligation to secure the conditions for the effective exercise of the right to a self-determined and dignified death, and that the decriminalisation of certain forms of assisted suicide would require strict regulation and appropriate safeguards (see paragraph 94 above). In the case of PAD, this would also necessarily involve a positive provision of access to medical intervention, such as access to life-ending drugs (see paragraph 48 above, and also Haas, cited above, § 53). The applicant’s complaint therefore goes beyond mere non-interference,engaging negative and positive obligations, which are intertwined. In this respect, the Court would reiterate that the boundaries between the State’s positive and negative obligations under Article 8 do not always lend themselves to precise definition. However, the applicable principles are similar. In both contexts regard must be had to the fair balance that has to be struck between the competing interests.
The court then turned to see whether the ban in Hungary was compatible with Article 8, requiring it to examine:
138. […] whether a fair balance has been struck between the applicant’s interest in being able to end his life by means of PAD, and the legitimate aims pursued by the legislation in question, regard being had also to the positive obligations entailed by decriminalisation of PAD (see paragraphs 135 and 136 above) and the State’s margin of appreciation in this domain.
The ECtHR:
143. [could] not but note that a certain trend is currently emerging towards decriminalisation of medically assisted suicide, especially with regard to patients who are suffering from incurable conditions (see paragraph 63 above). Nevertheless, and even if access to PAD has recently been or is being deliberated in the parliaments of certain other member States (see paragraph 60 above), the majority of member States continue to prohibit and prosecute assistance in suicide, including PAD (see paragraph 61 above). Moreover, the Court notes that the relevant international instruments and reports (see paragraphs 35-41 above), including the Council of Europe’s Oviedo Convention, provide no basis for concluding that the member States are thereby advised, let alone required, to provide access to PAD (contrast, mutatis mutandis, Fedotova and Others, cited above, §§ 175-77).
144. In view of the foregoing and noting that this subject continues to be one that raises extremely sensitive moral and ethical questions, and one on which opinions in democratic countries often profoundly differ (compare A, B and C v. Ireland [GC], no. 25579/05, § 233, ECHR 2010), the States must be granted a considerable margin of appreciation (see Haas, cited above, § 55). From the perspective of Article 8 this margin extends both to their decision to intervene in this area and, once they have intervened, to the detailed rules laid down in order to achieve a balance between the competing interests (see Pejřilová v. the Czech Republic, no. 14889/19, § 43, 8 December 2022, and Evans v. the United Kingdom [GC], no. 6339/05, § 82, ECHR 2007-I). Having said that, the Court would reiterate the long-established principle that even when the margin of appreciation is considerable it is not unlimited and is ultimately subject to the Court’s scrutiny (see Handyside v. the United Kingdom, 7 December 1976, § 49, Series A no. 24; A, B and C v. Ireland, cited above, § 238, and Verein Klimaseniorinnen Schweiz and Others v. Switzerland [GC], no. 53600/20, §§ 450 and 541, 9 April 2024).
145. Having regard to the arguments raised by the Government and some of the third parties (see paragraphs 99-100, and 114-116 above), the Court finds it appropriate to point out that it has already found that Article 2 does not prevent the national authorities from allowing or providing PAD, subject to the condition that the latter is accompanied by appropriate and sufficient safeguards to prevent abuse and thus secure respect for the right to life (see paragraphs 126 and 127 above). It is in the first place for the national authorities to assess whether PAD could be provided within their jurisdiction in compliance with this requirement.
The Hungarian government placed considerable reliance on the argument that relatxation of the relevant legislation could “expose vulnerable people to overt and covert pressure to end their lives, affect their sense of self-worth, undermine trust in the medical profession, and create the effect of a ‘slippery slope’” (paragraph 149). In response, the ECtHR noted that
150. […] any system of PAD – even one limited to terminally ill patients with refractory symptoms (see paragraph 94 above) – would require the development of a robust regulatory framework, capable of being effectively and safely applied in practice, and willingness to cooperate on the part of the medical profession. It notes in this connection that the safeguards which are already in place with respect to RWI in Hungary and some other contracting States might admittedly be of some relevance (see paragraphs 21, 77, 79, 94, above; compare also the criteria for compatibility with Article 2 of PAD and withdrawal of life-sustaining interventions, summarised in paragraphs 127 and 130 above). However, it cannot be overlooked that the provision of PAD in respect of patients who are not dependent on life support may give rise to further challenges and a risk of abuse (compare Pretty, cited above, § 74).
151. In this connection, the Court notes that both of the experts heard by the Court referred to the challenges in ensuring that a patient’s decision to use PAD is genuine, free from any external influence and is not underpinned by concerns which should be effectively addressed by other means (see paragraphs 49 and 54 above). Furthermore, the process of communication with the patient must be capable of accommodating the real possibility that the patient will change his or her view on PAD as the disease progresses. Ensuring the ongoing validity of the request can be particularly difficult in the case of medical conditions, such as ALS, where patients might ultimately lose the ability to communicate (ibid., and paragraph 12 above). In any case, the Court understands from the expert evidence that effective communication with the patient requires special skills, time and significant commitment on the part of medical and other professionals, as does the provision of adequate palliative care, which both experts considered to be a necessary precondition for considering recourse to PAD (see paragraphs 49 and 54 above). The Court notes in this connection that the assessment and allocation of such resources is, in principle, a matter which falls within the margin of appreciation of the domestic authorities.
An important plank of Mr Karzai’s case was that he would be condemned to “existential suffering” in the period of time before a combination of the withdrawal of life-sustaining treatment at his request (in the court’s jargon, “RWI,” for “refusal… or withdrawal of life-sustaining or life-saving interventions). As the court noted, he appeared to “rely heavily on this alleged lack of any alternative means of addressing his suffering” (paragraph 154).
The court identified that “according to the expert evidence heard by the Court, the available options in palliative care, guided by the European Association of Palliative Care’s Revised Recommendations, including the use of palliative sedation, are generally able to provide relief to patients in the applicant’s situation and allow them to die peacefully” (paragraph 154).
Mr Karzai did not dispute this, but instead:
155. […] argued that he would refuse such a course of action, since, by being medically sedated, he would lose what is left of his autonomy (see paragraph 91 above; see also the concerns expressed by the German Federal Administrative Court, paragraph 71 above). The Court notes that this is a legitimate personal choice, and one of an undoubtedly crucial nature (see paragraph 46 above). However, it considers that a personal preference to forego otherwise appropriate and available procedures cannot in itself require the authorities to provide alternative solutions, let alone to legalise PAD. To hold otherwise would effectively mean that Article 8 could be interpreted as encompassing PAD as a right that is enforceable under the Convention, regardless of the available alternatives.
The court noted that the existential suffering to which Mr Karzai referred was not uncommon in patients with ALS / MND, but not exclusive to them, and also that “existential suffering may be refractory to medical treatment […] and that the use of sedation to alleviate it might be contested or unwarranted in certain situations.” It continued:
158. The gravity of the applicant’s suffering can in no way be underestimated. However, in the Court’s opinion, it is part of the human condition that medical science will probably never be fully capable of eliminating all aspects of the suffering of individuals who are terminally ill. Moreover, although it amounts to genuine and severe anguish, existential suffering relates essentially to a personal experience, which may be susceptible to change and does not lend itself to a straightforward objective assessment (see, for instance, paragraph 43 above). It is not for the Court to determine the acceptable level of risk involved in PAD in such circumstances; it is enough to note that the difficulties in objectively appraising refractoriness and other relevant elements of existential suffering may further exacerbate the risks addressed above (see paragraphs 149-151). For this reason, the Court is unable to accept this argument as one which militates for an obligation under Article 8 of the Convention to legalise PAD. However, this heightened state of vulnerability warrants a fundamentally humane approach by the authorities to the management of these situations, an approach which must necessarily include palliative care that is guided by compassion and high medical standards. The applicant did not allege that such care would be unavailable to him (see paragraph 154 above), and the domestic authorities cannot therefore be regarded as falling foul of any positive obligation that might arise from Article 8 of the Convention in this regard.
The ECtHR dismissed relatively briefly Mr Karzai’s claim that the criminal prohibition in the Hungarian law (including the application to assisting him to having recourse to it abroad) was disproportionate, placing particular weight on the considerable margin of appreciation granted to member States of the Council of Europe. It reiterated that “the applicant’s complaint that he was prevented from having recourse to PAD in Hungary because of the criminal-law prohibition on its use cannot be examined separately from the question of the positive provision of PAD, which it has already addressed. That is because, as explained previously […], the introduction of an exception to the impugned prohibition would inevitably require positive measures and regulation of PAD by the State” (paragraph 159).
In conclusion, on the “pure” Article 8 ECHR claim:
166. The Court emphasises that the issue it has been asked to determine in the present case is not whether a different policy – such as one providing for PAD – might have been acceptable, but whether in striking the particular balance that they did between the competing interests, the Hungarian authorities remained within their considerable margin of appreciation (compare, for instance, Hristozov and Others, cited above, § 125). Against the above background, the Court does not find that the Hungarian authorities overstepped that margin. It thus follows that there has been no violation of Article 8 of the Convention.
167. That being said, the Court would reiterate that the Convention has to be interpreted and applied in the light of present-day conditions. The need for appropriate legal measures should therefore be kept under review, having regard to the developments in European societies and in the international standards on medical ethics in this sensitive domain (compare S.H. and Others v. Austria, cited above, § 118, and Y v. France, no. 76888/17, § 91, 31 January 2023),
The ECtHR then turned to the question of whether Mr Karzai was discriminated against because Hungarian law did not provide him with an option to hasten his death, although it did provide such an option to terminally ill patients who were dependent on life-sustaining treatment. It dismissed this complaint briskly:
174. The Court takes note of the Government’s argument that RWI and PAD are inherently different acts in terms of their causation and intent (see paragraph 172 above), and that the applicant cannot be compared to those persons whose lives depend on life-sustaining treatment (see paragraph 171 above). However, the Court is not required to determine these contested points as, in any event, the alleged difference in treatment has objective and reasonable justification. As a further preliminary point, it should be noted that the applicant also argued that terminal illness as the condition to have recourse to RWI was not defined in law (see paragraph 170 above). The Court notes that the Healthcare Act refers to a serious illness leading to death within a short period of time (see paragraph 21 above). While the Healthcare Act does not specify that period in further detail, the Court does not find this of particular importance, especially since the applicant’s main argument is based on the fact that he is expected to need continuous life-sustaining treatment, if at all, only at the very end stage of his disease.
175. The Court notes that the right to refuse or request discontinuation of unwanted medical treatment is inherently connected to the right to free and informed consent to medical intervention, which is widely recognised and endorsed by the medical profession, and is also laid down in the Oviedo Convention (see paragraphs 35, 36, 41 and 56 above; see also Mayboroda v. Ukraine, no. 14709/07, § 52, 13 April 2023, and Reyes Jimenez v. Spain, no. 57020/18, §§ 29 and 30, 8 March 2022). This point has also been consistently reiterated by the Court with regard to situations where the refusal to accept a particular treatment might lead to a fatal outcome (see Pretty, cited above, § 63; V.C. v. Slovakia, no. 18968/07, § 105, ECHR 2011 (extracts); and Jehovah’s Witnesses of Moscow v. Russia, no. 302/02, § 135, 10 June 2010). It must be acknowledged that the refusal or withdrawal of treatment in end-of-life situations is the subject of particular consideration or regulation because of the need to safeguard, inter alia, the right to life (see paragraphs 37, 38, 130, and 171 above); however, such refusal or withdrawal is intrinsically linked to the right to free and informed consent, rather than to a right to be assisted in dying.
176. The Court further notes that it has found it justified for Hungary to maintain an absolute ban on assisted suicide, on account, among other aspects, of the risks of abuse involved in the provision of PAD, which may extend beyond those involved in RWI (see paragraph 150 above); the potential broader social implications of PAD (see paragraph 149 above); the policy choices involved in its provision (see paragraphs 151, 157 and 161 above); and the considerable margin of appreciation afforded to the States in this respect (see paragraph 144 above). Similar cogent reasons exist under Article 14 for justifying the allegedly different treatment of those terminally ill patients who are dependent on life-sustaining treatment and those patients who are not, and who in consequence cannot hasten their death by refusing such treatment. The Court would note in this connection that, in contrast to the situation with regard to PAD, the majority of the member States allow RWI (see paragraph 59 above). Furthermore, as mentioned above, the right to refuse or withdraw consent to interventions in the health field is recognised also in the Oviedo Convention, which, in contrast, does not safeguard any interests with regard to PAD (see paragraphs 35 and 36 above). The Court therefore considers that the alleged difference in treatment of the aforementioned two groups of terminally ill patients is objectively and reasonably justified.
177. It follows that there has been no violation of Article 14 taken in conjunction with Article 8 of the Convention.
The arguments under Articles 3 and 9 ECHR were not considered to raise any separate issues.
Judge Wojtzczek would not have held that the application was admissible. Judge Felici also strongly regretted the fact that the case had not been remitted to the Grand Chamber “which would have allowed a more up-to-date approach to the principles regarding end-of-life care and PAD, which, given the extreme importance of the subject, was certainly the task and responsibility of the Grand Chamber.”
Comment
In line with my normal approach to this issue, I will not comment on the merits of whether what I will call here PAD (after the judgment) should be made legal. It is, however, a decision which makes interesting reading given the prominence of the issue in politics in the United Kingdom (and its surrounding islands) at the moment. It is, indeed, a decision which I suggest makes necessary reading for those wanting to grapple with the underpinning rights issues in a way which goes beyond soundbites (and, for those wanting to go behind headlines, this explainer may also be useful). The court’s decision is, in particular, helpful in making clear how legalising PAD is not simply a matter of the State getting out of the way of willing doctors wishing to prescribe medication to wanting patients. Rather, as the court makes clear, it inevitably involves positive actions on the part of the State, including providing “access to medical intervention, such as access to life-ending drugs.” That is, in itself, not an argument for or against legalisation. It is, however, an argument for clarity about what it entails.
For information, for those wanting to take the political temperature in the United Kingdom, the Labour manifesto is silent on the subject. The Conservative Party manifesto provides that:
We will maintain the position that assisted dying is a matter of conscience and will respect the will of Parliament. Debates on assisted dying should never distract from the importance of delivering high-quality palliative care services and we will continue to support children’s and adults’ hospices.
The Liberal Democrat manifesto provides that they would;
Give Parliament time to fully debate and vote on legislation on assisted dying for terminally ill, mentally competent adults with strict safeguards, subject to a free vote.
The Green manifesto provides that they would:
Elected Greens will support a change in the law to legalise assisted dying for people suffering from terminal disease who wish to avoid prolonged unnecessary suffering, if this is their clear and settled will. Proper safeguards would be put in place.
Plaid Cyrmu is silent on the subject. The SNP had not published its manifesto at the time of writing this (16 June 2024) but assisted dying would be a matter in the first instance for the Scottish Parliament – albeit, as I note here, one requiring action by the Westminster Parliament).
