UN Experts speak out against the euthanasia of persons with disabilities

In a press release of 25 January 2021, the Special Rapporteur on the rights of persons with disabilities, the Special Rapporteur on extreme poverty and human rights; and the Independent Expert on the enjoyment of all human rights by older persons strongly reiterated that disability can never justify euthanasia or assisted suicide. Such joint position is exceptional. The authors, independent experts mandated by the Human Rights Council, are respected and experienced academics.[1]

They are concerned about the growing trend to adopt laws that allow access to euthanasia on criteria largely based on disability, including age-related disability, whereas disability should never justify ending a human life directly or indirectly. They emphasise that ending one's life because of one's disability would make no more sense or not be more acceptable than ending one's life because of one's membership of any other protected group, be it because of race, gender, or sexual orientation.

They argue that under no circumstances should a law consider a decision to terminate a person's life on the basis of one's disability to be taken freely and in an informed manner, nor should the State contribute to the implementation of such a decision. A law that allows for the termination of the life of a person who is not at the end of their life is in fact based on assumptions that experts refer to as ableist: based on the capacity of the person. Such a law implies a judgment about the quality and value of a person's life. However, the Convention on the Rights of Persons with Disabilities, adopted on 13 December 2006, definitively rejected ableist conceptions and associated stereotypes because disability is not a deficit of the person but a universal aspect of the human condition. In Article 10 of this convention, States Parties reaffirmed that the right to life is inherent to the human person and committed themselves to take all necessary measures to ensure the effective enjoyment of this right by persons with disabilities on an equal basis with others. Their status as persons with disabilities cannot, therefore, justify any impairment to their lives.

The experts further observe that even when euthanasia or assisted suicide is limited to persons at the end of their life or the terminally ill, older persons, persons with disabilities and particularly older persons with disabilities may feel subtly pressured to end their lives prematurely by the attitude of those around them or by the lack of appropriate services and support.

They then point out that a much higher proportion of people with disabilities live in poverty, especially in certain countries. People with disabilities who are condemned to live in poverty because of the lack of social protection may decide to take their own lives out of desperation, but such a decision can hardly be described as free and informed.

Finally, the experts note that persons with disabilities and their representative organisations are generally not involved in the legislative process, even though their participation in the drafting of laws affecting them, including those relating to assisted dying, is a key element of the States' obligation to promote and protect the right to life of every person on an equal basis.

Although not mentioned by experts, this strong statement comes at a time when Canada is in the process of amending its end-of-life legislation. Bill C-7, the Physician Assisted Dying Act, already passed by MPs, is currently before the Senate. Indeed, in 2019, a Quebec Superior Court judge struck down a provision of the current law that allows for assisted dying only for those whose natural death is reasonably foreseeable. As this impending death test was challenged by two people who suffered from degenerative and disabling diseases without being at the end of their lives, the judge found that the restriction violated their rights to equal treatment before the law and to life, liberty and security of the person (Truchon v. Attorney General of Canada). The federal government did not appeal, despite the request of dozens of associations of persons with disabilities.[2] It has to bring the law into conformity with the decision before February 26. It is surprising, by the way, that a single judge of a trial court can impose a change in a democratically adopted law.

According to the Canadian press, the three experts wrote to Canadian senators to remind them that disability can never justify euthanasia. The previous Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, in April 2019, upon her return from her mission to Canada,[3] had already expressed extreme concern about the implementation of the Medical Assisted Dying Act with regard to persons with disabilities, in particular because of the lack of proposed alternatives, of pressure, of lack of palliative care, etc. The Special Rapporteur had also expressed her concern about the lack of a legal framework for medical assistance for persons with disabilities. The Correctional Investigator (Ombudsman for Federal Offenders), in his June 2020 Annual Report, was alarmed by cases of euthanasia in prisons and called for " I recommend an absolute moratorium on providing MAiD inside a federal penitentiary, regardless of circumstance."[4] The Canadian Conference of Catholic Bishops launched an urgent appeal against the proposed legislation on euthanasia and assisted suicide,[5] which is also strongly opposed by associations of people with disabilities, but also by doctors, lawyers, religious communities, etc. The Canadian Conference of Catholic Bishops has also called for a moratorium on the use of euthanasia in prisons.

The UN experts observe the risks and the inevitable excesses of any legalisation of euthanasia, in particular the pressure exerted even discreetly or even unconsciously on elderly or disabled people. They share the concern of the World Medical Association which, at its General Assembly in October 2019, after a broad consultation on all continents, concluded: "The WMA reiterates its strong commitment to the principles of medical ethics and that utmost respect has to be maintained for human life. Therefore, the WMA is firmly opposed to euthanasia and physician-assisted suicide."[6]

They go further, placing the debate on the anthropological terrain. Indeed, as they point out, a law that allows the end of a person's life to be decided implies a judgement on the quality and value of their life. It assumes that the value of the person is linked to their quality of life, to the perception that they or those around them have of their life and to their participation in social life. This conception of man, whose value would therefore be subjective, arbitrary and changing over time, is the basis of the evolution observed in several countries, first and foremost Belgium, the Netherlands and Canada, but also of a certain amount of case law, such as the Vincent Lambert case in France, certain decisions of the European Court of Human Rights and the aforementioned decision of the Quebec Superior Court.

On the contrary, for the anthropology which is the foundation of European civilisation and which is recalled in every international instrument, dignity is inherent to all members of the human family and therefore does not depend on external and changing factors. The Convention on Persons with Disabilities, after recalling this fundamental principle set out in the Universal Declaration of Human Rights, insists by specifying that "discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person" (Preamble §8). The experts therefore position themselves in this classic perspective.

They also affirm that disability is a universal aspect of the human condition. Their statement is based on the Convention on the Rights of Persons with Disabilities, which sets out in Article 3 the principles on which it is based, including respect for the inherent dignity of persons and "Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity". The use of the term "human condition" is, however, very remarkable at a time when man wants to control everything and believes he is master even of life and death, like Pierre Simon who considered life as a "material" to be "managed". The "human condition" presupposes that man is subject to circumstances or norms that do not depend on him, that he receives his existence. The experts therefore resolutely place themselves in the classical anthropological perspective, the one that establishes not only the whole of European civilisation but also the entire system of international human rights protection.

Official text of the Declaration:

Disability is not a reason to sanction medically assisted dying – UN experts 

GENEVA (25 January 2021) – UN human rights experts today expressed alarm at a growing trend to enact legislation enabling access to medically assisted dying based largely on having a disability or disabling conditions, including in old age.

“We all accept that it could never be a well-reasoned decision for a person belonging to any other protected group – be it a racial minority, gender or sexual minorities - to end their lives because they experience suffering on account of their status,” the experts said.

“Disability should never be a ground or justification to end someone’s life directly or indirectly.”

Such legislative provisions would institutionalize and legally authorize ableism, and directly violate Article 10 of the UN Convention on the Rights of Persons with Disabilities, which requires States to ensure that persons with disabilities can effectively enjoy their inherent right to life on an equal basis with others.

The experts said that when life-ending interventions are normalised for people who are not terminally ill or suffering at the end of their lives, such legislative provisions tend to rest on - or draw strength from - ableist assumptions about the inherent ‘quality of life’ or ‘worth’ of the life of a person with a disability.

“These assumptions, which are grounded in ableism and associated stereotypes, have been decisively rejected by the Convention on the Rights of Persons with Disabilities. Disability is not a burden or a deficit of the person. It is a universal aspect of the human condition.

“Under no circumstance should the law provide that it could be a well-reasoned decision for a person with a disabling condition who is not dying to terminate their life with the support of the State.”

The experts said that even when access to medical assistance in dying is restricted to those at the end of life or with a terminal illness, people with disabilities, older persons, and especially older persons with disabilities, may feel subtly pressured to end their lives prematurely due to attitudinal barriers as well as the lack of appropriate services and support.

“The proportion of people with disabilities living in poverty is significantly higher, and in some countries double, than that of people without disabilities,” they said. “People with disabilities condemned to live in poverty due to the lack of adequate social protection can decide to end their lives as a gesture of despair. Set against the legacy of accumulated disadvantages their ‘architecture of choice’ could hardly be said to be unproblematic.”

The experts also expressed concern at the lack of involvement of people with disabilities, as well their representative organizations, in drafting such legislation. “It is paramount that the voices of people with disabilities of all ages and backgrounds are heard when drafting laws, policies and regulations that affect their rights, and especially when we talk about the right to life,” they said.

“Ensuring that people with disabilities and their representative organisations participate meaningfully in key legislative processes affecting them, including with regard to assisted dying, is a key component of States’ obligations to promote, protect and fulfill human rights and respect everyone’s right to life on an equal basis.”

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[1] The Special Rapporteur on the rights of persons with disabilities, Professor Gerard Quinn of Ireland, teaches at the Universities of Lund in Sweden and Leeds in the United Kingdom after having been a professor at the National University of Ireland, a member of the Commission on the Status of Persons with Disabilities, the Commission on Human Rights and the Council of State in his home country. Professor Olivier De Schutter, from Belgium, has been Special Rapporteur on extreme poverty and human rights since March 2020, after serving as Special Rapporteur on the right to food and then as a member of the Committee on Economic, Social and Cultural Rights. He is a professor at the Catholic University of Louvain and Science-Po Paris. As for the Independent Expert on the enjoyment of all human rights by older persons, Austrian academic Claudia Mahler, after having taught at the University of Potsdam, she became a member of the Deutsches Institut für Menschenrechte, the German equivalent of the National Human Rights Advisory Commission, responsible, inter alia, for the monitoring of the Convention on the Rights of Persons with Disabilities.

[2] https://inclusioncanada.ca/2019/10/04/advocates-call-for-disability-rights-based-appeal-of-the-quebec-superior-courts-decision-in-truchon-gladu/ 

[3] https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=24481&amp%E2%80%89;%20LangID%20=%20E 

[4] https://www.oci-bec.gc.ca/cnt/rpt/annrpt/annrpt20192020-fra.aspx?pedisable=true#s3 

[5] https://www.la-croix.com/Urbi-et-Orbi/Documentation-catholique/ferme-opposition-eveques-canadiens-projet-loi-leuthanasie-suicide-assiste-2020-11-25-1201126546 

[6] https://www.wma.net/fr/news-post/lassociation-medicale-mondiale-reaffirme-son-opposition-a-leuthanasie-et-au-suicide-medicalement-assiste/