“In order to respect privacy, taking photographs or filming videos showing a user or an intervener without their knowledge is prohibited by anyone.”
This is what we can read on a poster in the intensive care unit of the CISSS de Lanaudière, where Joyce Echaquan lost her life on September 28. A poster that brings back pain, while the drama is still very present in the memories of members of Quebec's Aboriginal communities.
It has now been six months since Joyce Echaquan filmed her last moments live using her phone.
It was his filming, in violation of this directive, that allowed the whole world to see and hear a reality that many Aboriginal people experience in the health system. A photo of this poster went viral on social networks last December. Carol Dubé, Joyce's husband, was struck by the poster. He called the hospital in Joliette to understand the reason for this directive. “They say it had been there since 2018, but I have never seen that,” he tells us.
Filming ban: a trigger across Quebec
After the death of Joyce Echaquan, the bans on filming in hospitals came as a shock to many people from Indigenous communities. Adélard Joseph, a teacher from Innu-Aimun, accompanied his wife to the Sept-Îles hospital for a consultation last December. “At the registration, right next door, there was a wall with a poster that said not to take photos or videos,” he explains to us, adding that he had never seen such a poster at the hospital before.
For Mr. Joseph and his spouse, the poster was a provocation. “Right away, in my head, it reminded me of the Joyce Echaquan case; he came looking for me,” he continues. My wife was frustrated. It was also looking for it.”
“I didn't know Joyce Echaquan. I know she was Atikamekw. She was an Aboriginal woman. She wanted services. Seeing a nurse insulting an Aboriginal patient, it made me react, it came to me inside. Has that ever happened in the past? Yes, but we didn't have cell phones or evidence.”
Today, he accompanies his spouse to each of his hospital visits to reassure her. “It can happen again,” says Mr. Joseph, referring to the death of Joyce Echaquan and the racism she experienced in the hospital.
This couple is not only expressing their frustration with the posters, but also the need to strengthen cultural safety for Indigenous people in Quebec hospitals.
A community that is still wary
Sipi Flamand testifies to the distrust of the Manawan community in the face of health care at the Joliette Hospital. “I also understand that the presence of this poster is necessary, but with Joyce's story, I think that the CIUSSS, the Lanaudière Social Services Center and the others should consider another approach because we see that families are a bit more suspicious of the center. hospitable,” explains the vice-head of the Atikamekw Council of Manawan.
Sipi Flamand asks for explanations about the relevance of the posters. “I think they should review them. And that they really explain why these posters were installed,” he adds. While it is forbidden to use your cell phone in certain places in hospitals as a security measure, the Grand Chief of the Atikamekw Nation Constant Awashish nevertheless also questions the relevance of these posters at the Joliette Hospital. “The use of the poster must be justified. In the current context, I don't think it's justifiable,” he says. Sandrine Filiatrault, a physician in training from the Wendate Nation, thinks that the guidelines concerning the ban on filming in hospitals are justified,” he says. But they need to be reviewed.
“It is totally inadequate to take videos and photos of others without their permission, even more so if they are in a vulnerable situation in the hospital while they are sick,” she says. “On the other hand, I think you should use your judgment, and each case deserves to be evaluated separately,” adds the future doctor.
“In the case of Joyce, we clearly understand that the primary purpose of her video is not to invade someone's privacy, but to denounce a totally unacceptable situation. In similar cases, taking into account the concepts of systemic racism and cultural safety, in my opinion, this rule should not apply,” believes Sandrine Filiatrault. The Minister of Aboriginal Affairs, Ian Lafrenière, was not aware of the existence of the posters and the discomfort they caused in the communities prior to our call. “I hope there is no connection to what happened with Ms. Echaquan,” he told us over the phone. He adds that he is curious and disappointed. “Honestly, I would be furious to hear that the posters were put up after the events.”
We inform him that, according to the CIUSSS de Lanaudière, they have been installed since 2018 in various facilities, in order to ensure respect for the privacy of users and hospital staff. The CISSS de Lanaudière informed us by email that it has taken note of this concern of community members and that it will follow up with its cultural safety officer. But there is no answer as to whether the CISSS will contextualize the poster.
“We're talking about something that was there before, but I understand the sensitivity very well,” adds the minister responsible for Indigenous Affairs, who assures us that he will follow up with the hospital. Several people we interviewed said they had not seen this kind of guidance in hospitals before Joyce Echaquan died. However, the CISSS de Lanaudière confirms that it has not installed more posters in recent months. As for the CISSS de la Côte-Nord, linked to the Sept-Îles hospital, last month it updated its posters, which were several years old, to add video shooting, in addition to photos.
This update was necessary, says the institution. The first poster was created on her own initiative several years ago and is displayed in particular in emergency rooms, tells us the communications and legal affairs advisor Marlène Joseph-Blais. According to the Ministry of Health and Social Services, these posters are not specific to the CISSS de Lanaudière and the Côte-Nord region.
However, they do not fall under provincial guidelines. They fall under the right to privacy, which is protected in Quebec under the Civil Code and the Charter of Rights and Freedoms.
Privacy protection: a legislative vacuum
But why are these guidelines relevant? According to Me Patrick Martin-Ménard, a lawyer specializing in health issues, the guidelines are based on the right to confidentiality of users and hospital staff. “At the patient level, I think it is clear,” he tells us. In my opinion, there is little room for debate. Every patient has the right to the confidentiality of their medical file.”
“Now, there is another element, which is the staff,” continues the lawyer, whose firm is dedicated to defending the rights of users who are victims of the health system. Often, in the past, there have been cases where, in fact, staff were filmed without their knowledge, and this gave rise to public denunciations with the publication of videos where the staff were clearly identified. And in some cases, it had negative consequences for them.”
However, Ms. Martin-Ménard notes a legislative void in connection with this right to confidentiality and a lack of uniformity in the directive. “There is a need to find a way to legislate so that videos can be shot in a context that will both respect the confidentiality requirements of users and that will make it possible to document situations that may prove to be problematic.” According to him, each establishment adopts its own regulations to enforce the right to confidentiality..
This duty is applied differently from one place to another, as confirmed by the Ministry of Health and Social Services. In some places, these guidelines are strongly reinforced, and in others, users have been able to film in detail the care they received without having their phones removed, reports Me Martin-Ménard.
A delicate context
The legislative vacuum triggers several people, especially after the death of Joyce Echaquan, as evidenced by our stakeholders. The Commission of Inquiry on relationships between Aboriginal people and certain public services in Quebec has shown that the quality of services offered to Aboriginal peoples has never been prioritized.
We are therefore discussing posters with the co-director of research at the Viens Commission. “When, spontaneously, we look at a poster whose objective is to preserve people's privacy, but in the end, it is interpreted as putting the lives of these people at risk, it is because, somewhere, there is a message that does not get through,” says the co-director of research for the Viens Commission and professor of the UQAT School of Native Studies, Sébastien Brodeur-Girard.
But it was thanks to Joyce Echaquan's phone that the message about the realities experienced by Indigenous peoples in Quebec institutions got through. As attested by several Aboriginal experts, it was indeed after the death of Joyce Echaquan that the 142 recommendations of the Viens Commission were more seriously implemented.
“If Joyce hadn't filmed herself, we wouldn't have heard about it. And that's an awareness that must follow as well. Because, yes, people were shocked by the existence of this discrimination, but beyond that, we must realize that this discrimination exists and continues. You don't pay attention to it because you have to film it for people to realize that something is going on. It takes images, otherwise you dismiss it all the time. That is a serious issue.”
Joyce's principle for repairing
According to the people we consulted, posters prohibiting filming in hospitals undermine the cultural safety of Aboriginal people. There is still a long way to go to repair relationships between Indigenous communities and the health system. Joyce's Principle offers a step in that direction.
“With Joyce's principle, we propose to work together to find ways to raise awareness, reports the vice-head of the Manawan community, Sipi Flamand. I think that the Joliette Hospital and the other hospitals could communicate to start collaborating with Indigenous communities and see how they could raise awareness, either on reconciliation or on healing together between Indigenous communities and hospital centers.”
However, this principle has been slow to be applied by the provincial government. “We did not agree on systemic racism,” says the Minister responsible for Indigenous Affairs, Ian Lafrenière. “But even if we did not agree on the principle of systemic racism, that does not prevent us from fighting racism. We are in part responding to Joyce's principle,” he said about the appointment of a member of the Manawan community to the board of directors of the CISSS de Lanaudière.
In the meantime, at the Joliette hospital, where Joyce Echaquan lost her life a few moments after filming herself receiving racist insults from members of the health care staff, posters prohibiting her act are being circulated without contextualization.