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The hearings for the public inquiry into the death of Joyce Echaquan, which took place over the past few days, made it possible to portray a reality that many people experience in the health system. We no longer talk about isolated cases: many of them are discriminated against by health workers because of their skin color, gender, sexual orientation, weight, disability and much more.
The consequences can be serious and can go as far as not being treated properly for the patient. When you are at risk of discrimination, how can you protect yourself by seeking treatment? We discuss it with experts and with those who experience this type of situation.
Before going to a health care facility
- To be accompanied
“You are not always the best person to defend yourself, especially if you feel vulnerable, anxious, fragile or uncomfortable,” says Edith Bernier, author, consultant and activist against fat-phobia. She believes that being accompanied by someone you trust can reduce the risk of being discriminated against if you are likely to be discriminated against. The company of a loved one allows you to have a witness and a defender in the event of an incident. Unfortunately, health regulations related to Covid-19 can make it more difficult.
- Prepare your questions
Where possible, Ms. Bernier also suggests drawing up a list of questions to ask the staff dealing with them. She believes that this makes it possible to guide the discussion, and to return to the real subject of the discussion, i.e. to the reason for the consultation. “We can ask ourselves why the proposed solution is the only one, or the most effective, for the problem we have,” she says.
- Know your rights
Can patients take advantage of their rights, which are too often overlooked, in a hospital establishment? Did you know that you can refuse care? Asked about this, the Ministry of Health and Social Services states that, in general, a refusal form must be signed and recorded in the file.
The patient must also consent to receive care. “Even if you have given your consent for something, even if you have signed, you can withdraw at any time,” explains Ariane Métellus, consultant in perinatal and sexual, reproductive and perinatal health. She indicates that consent must be obtained for each procedure when receiving treatment at the hospital.
“It is the duty of health professionals”, underlines the consultant. A patient may also seek a second opinion, change medication, or be transferred to another institution. Also according to the Ministry of Health, the patient should discuss this with the health care team on site, as protocols and procedures vary depending on the service.
“Each institution has its own ways of doing things; the patient will be able to access and learn about them by talking to the teams on site”, say the health authorities. Unfortunately, acting preventively does not exclude the possibility of an incident occurring. ” Mireille Ndjomouo is an example of someone who has made their rights known. It's very revealing,” regrets Ariane Métellus. The mother of the family, whose death is the subject of an investigation, could not be accompanied for most of her hospitalization.
During a visit
- Document the visit and ask questions
The medical team must enter several things in the patient's file. The rules concerning the information that must be recorded in a file vary according to the institution and the ethical obligations of the health professional. “You must write what is done and what is administered, but also what the patient refuses, whether it is a treatment or an intervention,” explains Ms. Métellus. The consultant recommends making sure of this, for example, by saying: “You are refusing me such and such things, I want it to be written in my file.”
Ms. Métellus also recommends asking questions about the risks, benefits, alternatives, and risks associated with a proposed or imposed treatment, procedure, or protocol.
“It's part of consent,” she said. The consultant also advises patients to take notes in a personal notebook to document everything they experience. For her part, Edith Bernier suggests recording conversations with medical staff when you feel threatened.
After a visit
- Access his file
A patient's medical file belongs to them and can be consulted at any time. “It is important to do this to get an idea of the facts and to obtain other elements,” summarizes Ms. Métellus. The Health book allows access to certain information online. If it is a medical file kept in a hospital or a CLSC, it is possible to access it by making a request to the institution's archives.
In general, patient records held by a hospital should be kept for a minimum of five years after the last entry in the file.
- File a complaint
“Discrimination is contrary to the Charter of Human Rights and Freedoms,” says Me Geoffroy Guilbaut, a lawyer specializing in liability. In the event of a discriminatory incident, the lawyer suggests filing a complaint with the Commission des Droits de la Personne et des Droits de la Jeunesse, which will investigate. It is a free process that can be initiated by an individual or organization on behalf of a complainant.
While the Charter protects individuals against discrimination based on ethnicity, age, sexual orientation or religion, for example, weight and appearance are not listed, says Edith Bernier, who campaigns for this to be recorded. Patients who feel they have received inadequate or discriminatory service in a health and social services institution can also contact The Service Quality and Complaints Commissioner of the establishment. “The complaints taken into consideration aim to change practices. No action will be taken against the health professional targeted by the complaint,” notes Ariane Métellus, reproductive and sexual health consultant. To file a complaint, it is possible to obtain help from the complaint assistance and support centers (CAAP). The consultant also offers a complaint support service.
“There is all this education to do around the complaint process,” reports Ms. Métellus, who considers that the process can be difficult and long. “These are not easy steps. The system is ill-suited, as for people who file complaints of sexual violence. It's the same for people who have experienced violence in the health system,” she believes. If a caregiver has comments or behaviors that cause harm, you can also contact the professional order of caregivers, for example the Collège des Médecins or the Order of Nurses and Nurses of Quebec. Doctors and nurses are governed by their code of ethics, and it is possible to file a complaint against an individual who violates it.
For example, the code of ethics for physicians states that physicians must perform their professional obligations with integrity and with respect for dignity. On the legal side, a patient can file a civil liability claim if he believes that a health professional has made a mistake that has caused him damage. As the lawsuit process can be expensive and complex, Ms. Guilbault recommends that patients file a complaint.
- Sharing your story
“Access to networks, which is not a legal responsibility, is often effective”, testifies Me Geoffroy Guilbault. The latter emphasizes that speaking out on the web makes it possible to highlight a situation, and also to demonstrate the concern of a community, as we have observed. Giving people a voice is what Tori Ford, founder of Medical Herstory, wants to do. The platform invites participants to share their diverse perspectives and experiences in a trauma-informed environment. To combat the phenomenon, Ms. Ford favors self-representation, by helping patients navigate the medical sphere.
It was her own experience in the health system as a result of chronic health conditions that prompted her to launch the platform in 2018. “I started to hear about so many others who had faced situations of sexism, racism, and discrimination based on physical ability in the medical setting,” says the founder. At the time, there was no place to give evidence. Ms. Corinne Jacquet, a lawyer at the Saint-Michel Legal Clinic, believes that more needs to be said about this subject. “Often, people experience medical racism and don't know that they are experiencing it. They are experiencing traumatic or troubling experiences, but they are moving on, even though they have just experienced a form of stigma and systemic racism,” she tells us. When the irreparable happens, the case goes to the coroner.
“The coroner's mandate is not to distribute blame, but to prevent other similar situations from happening,” said Me Geoffroy Guilbault. This is how the death of Akeem Scott, which occurred in 2019, was qualified as avoidable in the recently published report by the coroner Karine Spénard.
His family questions whether racial profiling resulted in negligence on the part of staff at the Jewish General Hospital, where the young man showed up in an ambulance. His best friend was with him.
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