How France's assisted dying law discriminates against disabled people

Diagnosed with a rare and serious genetic disorder, Duchenne Muscular Dystrophy, he fought for years to get an electric wheelchair. When he had a cavity, dentists refused to take on his case as they feared he would choke during the procedure.

Now, as he represents an organisation that supports those with disabilities and at the end of life, he faces another challenge. As France’s assisted dying Act (Proposition de loi relative au droit à l’aide à mourir) is planned to go into effect early 2027, he stands concerned that it discriminates his country’s most vulnerable members, including himself.

On the surface, France’s assisted dying law says that those who have a disability are not eligible. However, looking deeper, those with serious disabilities or conditions can be offered the procedure under the descriptions of a “serious and incurable condition” that is “irreversible,” "points to a “worsening of health,” or “compromises quality of life.”

Bouffard spoke about that concern at the UN in Geneva during a side event within the Human Rights Council session. The event was hosted by the European Centre for Law and Justice (ECLJ) and took place earlier in October. It was livestreamed on YouTube in French and later dubbed into English.

“For me, this possibility is primarily a danger, and it means having to live with that possibility,” he says. He also asked: “Would I be better off dead or alive?”

Evaluation

The side event also featured the UN Committee on the Rights of Persons with Disabilities’ Secretariat Officer, Ximena Suarez. Suarez followed up on the questions that the Committee asked to France and its concerns that the bill discriminates against those with disabilities. She also called for the need to evaluate safeguards and protections in the law.

“Must we also examine its real effects on persons with disabilities? Must we examine its effects on the right to life, the disproportionate effects it may have and the ableist assumptions it may reinforce?” she says.

She also expressed that “if a policy presents suffering as a natural consequence of disability, it risks ignoring the roles of social barriers as well as failures in the realisation of rights.” She gave the example of Canada that amended its criminal code to create a second track (track 2) within its Medical Assistance in Dying programme (MAiD).

This track 2, she says, extends its eligibility to those whose natural death is not “reasonably foreseeable.” Upon further evaluation of that particular track, it was found that it was disproportionately used by women with disabilities and marginalised individuals with disabilities. There was also the absence of an independent mechanism to oversee what was taking place, Suarez added.

“Does the state truly guarantee that persons with disabilities can live in dignity and on an equal basis with others?” She challenged.

As solutions, she calls for a structural evaluation of measures to improve quality of life such as housing, support services, as well as care.

Suarez also proposed an analysis of the bill’s compatibility with the UN’s convention on human rights. Particularly the recommendations involving the rights to life, integrity, independent living, health, and social protection. She also stressed that the French government should invest in more support services such as palliative care.

Lastly, Suarez advocated the need to participate in debates and discussions involving human dignity and improving quality of life for everyone. Integrity and knowledge of rights should be at the beginning, not at the end of a policy, she stressed. Those with disabilities should also be present within these discussions, and with that, we can learn what it means to live a dignified life together, she added.

Not an afterthought

Now that Suarez has outlined the necessary steps, the ECLJ hopes that their side event will not become an afterthought for the French government. What they want to see is a correct understanding of human rights from the UN as well as find ways to protect dignity and its framework. In the meantime, lawyers within the ECLJ have been trying to confront the law’s ambiguous phrasing as it undergoes the decrees of application.

As of now, ECLJ legal experts, Nicolas Bauer and Christophe Foltzenlogel, say that they are challenging the bill’s two-day waiting period. Although the physician is given a maximum of fifteen days, nothing prevents him from quickly consulting two colleagues in a collegial procedure and get back to the patient with a decision within a few hours only.

For one to be aided in dying, the conditions set are not tight: “suffering from a serious and incurable condition, regardless of its cause, that is life-threatening and in an advanced OR terminal stage” and “experience physical or psychological suffering related to this condition that is EITHER resistant to treatment OR deemed unbearable by the person when they choose not to undergo treatment OR to discontinue treatment.”

What is a serious condition? What is an advanced stage? The definitions are ambiguous and open to interpretation which can lead to manipulation and abuse, the ECLJ said. They have since appealed to the French legal system and to various institutions within the medical system.

In addition to the waiting period, they would also like to see the freedom of conscience and religion made into a mandatory law. This is especially crucial when the health authority is considering doing a list of doctors who grant or who may want to opt out of performing assisted dying procedures. Because, if many physicians have a contentious objection to assisted suicide, how will the right of patients to be aided in dying be fulfilled?

“We don’t feel that conscience is a fundamental freedom here and that the government wants to prioritize the access to euthanasia,” Christophe Foltzenlogel says who is an Advocacy Officer at the ECLJ.

No criminal offence

And the most unsettling part of the bill is assessing whether a person is under pressure or coercion in applying for their death. According to the assisted dying law, doctors have the right to refuse if they feel the applicant was under any undue pressure. However, approval of the request is dependent upon a single doctor, and that is a problem.

“If the physician in charge doesn't see the pressure or doesn't care about the pressure that the patient is going through, then he can still go on with euthanasia anyway, and he'll just say in his report that there was no pressure, or: “I didn't see any pressure from anyone during the procedure, so I went on,” Foltzenlogel said. He also emphasises that “there is no criminal offence for this type of pressure.”

Besides the ECLJ and the UN, more have voiced concern about the law granting complete autonomy to a single doctor. A mother of an adult son who has multiple disabilities also spoke at the ECLJ’s side event and called on the UN committee’s help.

“Giving power to life or death to a single doctor is unacceptable to me. Just like the sidelining of the caregiver who may not be the legal representative even though they have dedicated their life to supporting their loved one.”

She also called out the law’s inconsistencies.

“From vague definitions to blurry terms, from inconsistency to contradictions, this law has sown confusion, distress and fear in me,” she said.

What the Act leaves out may be disturbing. But the loss of freedom, especially when it comes to the most vulnerable members, may be the most unsettling of all.

“They are presenting this law to us as a new freedom. But freedom also implies being able to choose between several possibilities. Otherwise, it is a single choice, and what many disabled people lack today is not the possibility of dying. It is the means to live,” Louis Bouffard said at the event.