by Péter Stánicz*
1. Introduction
In 2022, in Sweden, media attention was given to the case of Staffan Bergström, a medical doctor who helped a man with Amyotrophic Lateral Sclerosis (ALS) to end his life with medication and lost his licence to practice medicine as a result of such actions. Similar problems are of critical interest internationally and have recently been reviewed by the European Court of Human Rights (ECtHR) in Dániel Karsai v. Hungary.
Dániel Karsai, a well-known Hungarian human rights lawyer, was diagnosed with ALS, an incurable neurodegenerative illness. Hungarian legislation denied him the possibility of medical assistance to end his life, and Mr. Karsai alleged that the absence of end-of-life assistance for persons with disabilities should be considered discriminatory and violates the right to privacy. In its judgment from 13 June 2024, the majority of the ECtHR did not find that Hungary violated the Convention. In this blog post, I will spotlight the issues brought to the attention by the case and the judgment of the Court. At the time of writing, work is underway on a request for the Grand Chamber to reopen the hearing.
2. Diagnosis of an incurable illness: Preparing for the unthinkable
ALS is a moto-neuron disease that destroys the neurons moving the muscles and, consequently, causes the atrophy of the muscles, gradually leading to complete paralysis. In the last stage of the illness, the loss of respiratory functions inevitably leads to death because of a respiratory collapse. This final stage is preceded by a long interval of immense suffering: far before losing the ability to breathe, the patient experiences a complete loss of most of the bodily functions; they are unable to move, sit, eat or speak. ALS patients do not usually need life-sustaining (e.g. mechanical ventilation) treatment until the very final phase. As it stands, the disease is incurable.
The illness does not necessarily affect cognitive capabilities. Therefore, persons affected by ALS can experience the decay of body functions with the often intact minds, being aware of what is happening to them and also of what will inevitably happen to them. This feeling of inevitable death is often characterised as ‘existential dread’ or ‘existential suffering’.[1]
3. A short summary of relevant Hungarian law
Under Hungarian law, only end-of-life decisions linked to refusal of medical treatment are available.[2] This means that a person can refuse life-saving or life-sustaining treatment and that the person’s death will take place due to treatment restriction (withdrawal of ongoing treatment or abstaining from beginning the treatment). This can be called an on-the-spot refusal, compared to an advance directive.[3]
Hungarian law also prescribes advance directives vis-a-vis medical decisions.[4] In the advance directive, life-sustaining treatment can be refused under the same conditions as the on-the-spot refusal. However, there is one additional case: in an advance directive, a person may refuse lifesaving and life-sustaining treatment if he has an incurable disease and is unable to care for himself physically as a consequence of the disease or suffers pain that cannot be eased with appropriate therapy.
An incurably ill person unable to care for himself has the right to decide about shortening his life in Hungary. This end-of-life decision can only be made if the person requires life-sustaining treatment. Physician-assisted dying (euthanasia or assisted suicide) is illegal in Hungary. Hungary also criminalises physician-assisted dying with an extraterritorial effect. This means that if a person with ALS were to travel to a country where physician-assisted dying is legally allowed, any family members or friends accompanying the person would be criminally liable for suicide assistance.[5] The healthcare professionals providing end-of-life services would also be criminally liable under Hungarian law.[6]
4. Mr. Karsai’s application to the European Court of Human Rights
Dániel Karsai concluded that under Hungarian law, he would have no control over the end of his life, including the quality of life he considers dignified.
As the description provided in the sections above indicates, ALS patients require life-sustaining treatment at a late stage of their illness when their physical capabilities have long disappeared.[7] Incurably ill persons who are unable to care for themselves have a legal option in Hungary to shorten their lives by refusing life-sustaining treatment. ALS patients, by the nature of their illness, are excluded from this option.
To provide an example, a patient with small-cell lung or pancreatic cancer can opt for chemotherapy to slow down the disease or refuse treatment and hasten the death. An ALS patient’s end-of-life phase differs from these end-of-life cases, because the option of hastening the death is not available and the period of suffering while not requiring life-sustaining treatment is usually longer than for other incurably ill persons.
The two groups of patients are in a relevantly similar situation. Both groups are suffering from similarly terminal illnesses; they are going through similar agony, yet they are treated differently: only patients requiring life-sustaining treatment are allowed to shorten their suffering.
In his application, Dániel Karsai focused on the discriminatory nature of Hungarian legislation, the unjustified distinction between incurably ill persons who require life-sustaining treatment from an early stage of their illness, and those, who do not.
In its previous case law, the Court has considered that modern medicine is able to sustain and extend vital functions and biological life until the extremes, thus, many people are concerned that they could be forced to linger on, connected to machines, without any control over their situation.[8] In the Pretty case, the Court was “not prepared to exclude” an interference with the right to respect for private life, opening the door for such applications under private life (Article 8 of the Convention).[9] In the Haas-case, the Court moved forward and acknowledged the individual’s right to decide how and at which point their life should end, if it is based on an informed, voluntary decision free of undue influence.[10]
The core of Mr. Karsai’s application is that by excluding him from all lawful end-of-life decisions, the Hungarian State condemns him to immense suffering, forcing him to be the silent observer of his own life, deprived of the opportunity to decide about the life quality he deems dignified.
5. Decision of the Chamber and dissenting opinion
The Chamber found no violation vis-à-vis Mr. Karsai’s fundamental rights by 6 to 1 votes on 13 June 2024 (Dániel Karsai v Hungary, Application no. 32312/23).
The decision’s central argument was that Mr. Karsai has not contested that high-quality palliative care is available to him in Hungary, which would be suitable to ease his suffering.
The Court upheld that everyone has the right to choose the time and manner of their death, as it falls under the right to private life. The Court also noted that a European trend can be observed towards legalising a wider range of end-of-life decisions. Nevertheless, the Court reiterated its previous opinion that the regulation of end-of-life decisions falls under the states’ margin of appreciation.
The decision cited that the right to refuse or request discontinuation of medical treatment in end-of-life situations was inherently connected to the right to free and informed consent to medical intervention, which was laid down in the Oviedo Convention, whereas physician-assisted dying (PAD) was not. The Court therefore considered that the alleged difference in treatment of the two groups was objectively and reasonably justified.
In the dissenting opinion, Judge Gilberto Felici agreed with Mr. Karsai that his plight requires a solution from the Court as well as the state. The elaborately argued dissenting opinion provides a clear critique of the majority’s decision. According to Judge Felci’s dissenting opinion:
„Even during the public hearing that the Section correctly organised, Mr Karsai presented his situation with courage, strength and vigour. He reminded the Court of its duty to rule on the specific case and in concrete terms, not merely in abstracto. The applicant’s physical weakness was a striking counterpoint to the strength of his arguments. The impression is that the applicant’s legitimate concerns were not taken into account, and that his legitimate request for help fell on deaf ears.”
Judge Felici provided criticism of the majority decision in a subtle and sensitive way. The Court clearly expressed that it cannot require states to legalise end-of-life decisions in general. However, as Judge Felici pointed out, the majority failed to provide an answer for Dániel’s specific situation: being locked-in his own body with no control over the end of his life, as opposed to other incurably ill persons in Hungary. He is a silent observer, sitting on the ruins of his human dignity.[11]
6. Conclusion
The case of Dániel Karsai has reached its first legal milestone, and the Chamber’s decision found no violation. Nonetheless, he is determined to continue.
Throughout the last year, Mr. Karsai has given the public a glimpse into his daily life, including its ups and downs. Sometimes, the videos and posts he has shared are deeply intimate, such as his struggles with daily tasks due to his illness or the way he requires personal care.
TV talk shows, roundtable discussions and conferences were held and most recently, a screenplay debuted in a theatre. His regular Facebook posts are read by thousands.
Death used to be one of the main taboos of Hungarian society. Today, it is a topic that can be heard anywhere from dining tables to bus stops. The plight of incurably ill persons and the challenges of healthcare professionals are highlighted. That is a development that few believed would ever happen. Perhaps, Dániel Karsai’s efforts may also help the topic of dying become less of a taboo in other countries as well.
Dániel Karsai and his team are currently working diligently on a request to the Grand Chamber. Until then, the author would like to cite Mr. Karsai’s motto: “To live is a right, not an obligation”.
* Péter Stánicz is a Hungarian attorney-at-law and PhD candidate at Eötvös Loránd University (Hungary). He is the head counsel of Mr. Dániel Karsai’s legal team.
[1] This was confirmed by the expert hearing in Karsai v Hungary by Prof. Régis Aubry and Prof. Judit Sándor.
[2] Act CLIV of 1997 on Health (Hungarian abbreviation: Eütv.) section 20. paragraph (3).
[3] Kussinszky Anikó – Stánicz Péter: Életvégi döntések itthon és Európában – az Emberi Jogok Európai Egyezményéből fakadó alapkövetelmények (KJSZ, 2021/2., 35-41. o.)
[4] Sections 22 (advance directive) and 16 (continuing power of attorney) of the Health Act.
[5] Section 162 of Act C of 2012 on the Criminal Code.
[6] Section 3 paragraph (2) b) of the Criminal Code.
[7] Medical literature and studies show that medical teams rarely propose invasive mechanical ventilation for ALS patients (Rousseau, MC., Pietra, S., Blaya, J. et al. Quality of life of ALS and LIS patients with and without invasive mechanical ventilation. J Neurol 258, 1801–1804 (2011).
[8] See Pretty v United Kingdom, no. 2346/22, § 65.
[9] Pretty § 67.
[10] Haas v Switzerland, no. 31322/07, §§ 51, 60; see also Koch v. Germany, no. 497/09, § 52.
[11] Footage of the Chamber hearing available: https://prd-echr.coe.int/web/echr/w/karsai-v-hungary-no-32312/23-
