Juliette Tapaquon's tragic story exposes health-care inequality

Juliette Tapaquon spent her final months in unimaginable pain. It’s the thought that still keeps her mother, Joyce Tapaquon, up at night.

A cervical cancer patient at Pasqua Hospital’s palliative care unit and a member of Carry the Kettle First Nation, Juliette was escorted out of the southern Saskatchewan hospital by police months before her death after texting to her home care nurse, whom she considered a friend, that she would “slap the bitch,” referring to her pain specialist. Leading up to the text, she’d felt the doctor had belittled her during an assessment and, on several occasions, hadn’t managed her pain.

According to the health authority’s internal report on the incident, the doctor called police because she perceived herself at substantial risk due to the text.

Juliette was left without a discharge plan or pain management care and went a month without acute services, according to a document about the case an Aboriginal health consultant prepared for Joyce. The health authority’s report says Juliette received consultative services in the months that followed, but not palliative care.

Juliette and her family believed she was being stereotyped as an addict and as a member of a gang. The health authority’s internal report said Juliette was believed to “have close association with individuals with significant criminal affiliation,” stating this was part of the reason her doctor felt at risk enough to call police.

Joyce says it wasn’t right to kick her daughter out of hospital and not allow her back until months later. “That's not how people live. This is racism. This is profiling,” she says.

Readmitted in August 2014 due to her deteriorating condition, Juliette was allegedly unable to access spiritual care and the ceremonial room in the months before she died. On the day of her death, Oct. 2, 2014, Joyce says she and her family were repeatedly ignored when calling for help from staff.

It was a long and painful road after her daughter's death.

Joyce spent almost five years in meetings with Regina Qu’Appelle Health Region officials to try to address her complaint about what she and Juliette experienced. Though the health authority’s initial report addressed the police incident, Joyce also raised concerns during their meetings about how her daughter was treated after she was readmitted and advocated for changes to be made.

Joyce says several promises weren’t kept by the health authority.

She feels no one in a position of authority truly cared about what her daughter faced or about making sure allegations of racism were addressed in the hospital — criticisms all too common among Indigenous patients and their families about health-care complaint processes, according to an investigation by Surviving Hate, a multi-year probe into alleged racism and discrimination against individuals across the country. Discrimination and racism disproportionately affect Indigenous Peoples in health-care settings.

The Regina Qu’Appelle Health Region started an internal review five months after Juliette was escorted out of hospital. It found hospital staff did not consult other services, such as social workers or security, before calling police. It also confirmed no discharge plan was made for Juliette and several requests for continued care by Aboriginal Home Care had been refused at the time.

Though the review acknowledged Joyce’s concerns, she says there were no consequences for those in charge of Juliette’s care. Most of her recommendations and the hospital’s commitments to improve cultural safety and address racism were either not followed through or if they were, no one told her.

When communications with the health authority dissolved and she stopped receiving updates entirely, Joyce filed formal complaints with the provincial college of physicians and surgeons and the human rights commission. None of them resulted in any true accountability for how Juliette was treated, Joyce said.

In a statement to Surviving Hate about Joyce’s complaint, the Saskatchewan Health Authority (which has since amalgamated provincial health regions, including the Regina Qu’Appelle Health Region) said it “cannot comment on specific cases or individuals due to privacy legislation.”

As an Elder who is visually impaired and feels the effects of several exhausting years trying to fight the system, Joyce says one memory drives her to continue. It’s when she sat at her daughter’s bedside in her final days.

“I told her … if something happened to her, or she passed away, that I would continue to fight her journey and seek justice for her so that there's no racism in the hospital or stereotyping,” says Joyce.

“We shouldn't be looked at like we're just drug addicts or we're just off the street.”

Complaints of racism not tracked, processes falling short

When a patient has a concern about care during a hospital visit in Canada, there is a system in place to help families and patients resolve complaints, typically facilitated by the hospital’s health authority responsible for setting policies.

Usually, the process recommended by hospitals and health authorities is this: Whenever possible, first address your concerns to the care provider. If the matter isn’t resolved to their satisfaction at this stage, the individual can make a formal complaint to the patient relations or patient quality care office. A complaint can be made to this office in person, by phone or online.

When it comes to fighting racism in the health-care system, there are many ways to complain and seek accountability. But none result in criminal convictions, punishment or ongoing accountability for racism and inequality, according to interviews with experts for this investigation.

Outside of going to patient relation services, patients or family members can — as Joyce did — also turn to the provincial ombudsperson, human rights commission or a health professional regulatory body if their first complaint fails to resolve the issue. Like health authorities, complaint practices vary and are typically mandated provincially or by the institution’s own policies.

The resolutions offered at these organizations aren’t designed to discipline health-care staff, says Bridget Klest, who researches institutional betrayal and trauma in health care at the University of Regina.

“These [complaint] processes were developed with the goal, not of helping the institution or helping the patient, but protecting the institution [or health-care worker] from legal harm,” says Klest.

Some reports on anti-Indigenous racism in health care in select provinces have also criticized existing complaint systems’ ability to address concerns by Indigenous patients about their care.

One review prompted by the B.C.’s government in 2020, the In Plain Sight report, for example, found “complaint processes appear ill-equipped to deal with allegations of racism and discrimination.”

Because of gaps in the system, the Surviving Hate team embarked on an investigation to find out if other people like Joyce Tapaquon were experiencing similar problems. We collected 31 instances where an Indigenous patient or family member filed a formal complaint about alleged racism in their care in a Canadian hospital. Nineteen, the majority of whom were interviewed by the team, described negative experiences such as receiving little updates or no response for their complaint, disingenuous apologies, little action against racism and even explicit denials that discrimination was a factor. (You can read our methodology here.)

Some also felt the process was so complex or exhausting to navigate that they took no further action or received little help to take their concerns further.

To determine efforts made to evaluate their own complaint systems, Surviving Hate also contacted 28 hospitals and health authorities about the complaints process run by their patient relations departments in each province and territory. Twenty-five responded. The survey only serves as a snapshot of hundreds of hospitals across Canada. We could not find any evidence of complaints by Indigenous patients about their hospital care or general complaints of racism faced during a hospital visit that led to criminal charges.

While all 25 respondents made formal complaints to their patient relations office, 20 say front-line health-care staff do not log complaints or concerns addressed at the unit level, complicating the ability to meaningfully track complaint data at their institution.

According to our analysis of the data, 15 said they don’t have a specific category for racism or discrimination that can be logged for trends tracking. In eight responses, health authorities or hospitals said they do not have a formal internal evaluation of their complaints process.

Twenty-one institutions said they have at least one representative who can assist Indigenous patients in navigating the hospital system as a whole — including the complaints process. Few had a representative for Indigenous patients navigating the complaints process specifically. While 22 institutions have cultural sensitivity training, it was not always mandatory or ongoing for staff.

“It’s not surprising,” says Dr. Barry Lavallee, reacting to Surviving Hate’s findings. Lavallee is a member of the Métis community of St. Laurent in Manitoba and CEO of the Keewatinohk Inniniw Minoayawin Inc. (KIM), a First Nations-led health transformation organization.

KIM works to create an anti-racist health-care system that meets the needs of northern First Nations people in Manitoba and collects data about the quality of health care.

“Patient complaints come ... (are) shared with the system and ... (then) gone forever. No transparency, no accountability … because on the other side of that large power equation are non-Indigenous people who control the narrative and the pathways.”

‘People were full of denial’: Tapaquon

With no funds for legal representation in her fight for more details about her daughter’s death in 2014, Joyce enlisted the help of Bob Hughes, then spokesperson for the Saskatchewan Coalition Against Racism, who supported her at the time.

To bring their concerns forward, they sought the help of an Aboriginal health consultant at the overseeing health authority, Regina Qu’Appelle Health Region. The consultant prepared a document summarizing the March 2014 incident. About a week after Juliette’s death in October 2014, the family had its first meeting with the health authority.

“When I look at the whole situation, people were full of denial,” says Joyce of that meeting.

“It could have been ironed out if everybody took accountability.”

Joyce and Hughes claim staff from Aboriginal Home Care, which had provided health services to Juliette in her home, and a patient advocate were prevented from speaking with the Tapaquon family and participating in the process. It was devastating.

“We felt so alone and so lost ... we needed people in our lives [who] were gonna help us through our journey,” says Joyce.

In the family’s responses to the health authority, presented during their meetings, Joyce asked the health authority to hold staff accountable for Juliette’s treatment, provide more education for staff, and make elders and spiritual care more accessible to patients. She also wanted the hospital’s ceremonial room to be accessible 24 hours a day like the hospital’s chapel, and a medicine lodge to be created in Juliette’s honour.

In a letter dated Jan. 5, 2016, the health authority also said it would “review its obligation in providing traditional items of care” and that “standard work documents” would be developed for things like smudging and access to spiritual care at the palliative care unit. The health authority also committed to ongoing consultations with Joyce and cultural sensitivity training for palliative care staff.

Eventually, the health authority changed its policy regarding access to the ceremonial room, making it available on request, but Joyce says it was still inaccessible to her when she asked permission during her own visit to hospital years later. Joyce also heard allegations of racism from peers in the years following Juliette’s death, making her feel as if nothing has changed. No effort was made to create a medicine lodge in Juliette’s honour.

From there, the communications with the hospital fizzled. So she attempted to take her concerns elsewhere.

In 2017, Joyce tried to file a complaint with the Saskatchewan Human Rights Commission (SHRC), but it was refused because it came in past its one-year post-incident deadline.

That same year, she filed a complaint with the College of Physicians and Surgeons of Saskatchewan. The college said it shared her concerns with the doctor, who they were confident had “genuinely feared for her safety” and provided adequate medical advice to Juliette’s caregivers.

“In all three instances — the health region, the college and the SHRC — the family's been met with bureaucratic intransigence and insult,” says Hughes.

The last thing Joyce heard, the hospital was developing new standardized processes. However, putting them into action seems to be a different story. Not getting closure through this drawn-out process has been a constant weight and stress on the family, she says.

The authority says the province’s privacy law prevents it from discussing Joyce’s case. Because of this, Surviving Hate gathered information on any general changes put in place to support Indigenous patients.

When asked what has changed since 2014, the health authority said protocols and procedures for how people access culturally appropriate care and support have been altered, but that it is “not feasible to attempt to outline specific changes that have taken place.”

When asked about what is currently available, the health authority said compulsory cultural responsiveness training is given to employees as part of their orientation and smudging can be done upon getting permission from staff. Health educators, elder and cultural support are available to patients and families through the health authority’s First Nations and Métis health office. It is unclear if any of those changes were made in direct response to Joyce’s complaints or requests.

No effective way to legally raise concern

Suing for medical malpractice is another way to try to hold institutions and people accountable in situations where patients feel their care was mismanaged or that racism was involved, but it can be costly and retraumatizing, says Shelagh McGregor, a civil lawyer with Weir Bowen LLP. She says non-disclosure agreements are also common, often leaving patients unsatisfied.

While a health-care provider can be charged for criminal negligence causing death, convictions are extremely rare.

Timothy Bryan, an associate professor in sociology at the University of Toronto and a hate crime expert, says even using Section 319 of the Criminal Code — provisions targeted at hate crimes — against an alleged perpetrator proves difficult.

“It’s designed to respond to things; behaviours, actions, incidents as individual occurrences,” says Bryan. Section 319(1) deals with public incitement of hatred, and Section 319(2) is wilful promotion of hatred.

These legal processes aren’t set up to respond to the kinds of violence that communities experience, says Bryan.

“When you have problems that are far more structural, far more systemic, there isn’t really an effective legal way of raising those concerns,” says Bryan.

One month after Joyce Echaquan's death, for example, the Canadian Women's Foundation wrote a joint letter about Indigenous women experiencing persistent barriers such as racism and prejudice while accessing Quebec's institutions, hospitals, schools and police services. The foundation wrote this prejudice is rooted in the history of residential schools, colonialism and genocide.

Joyce Tapaquon chose not to sue any organization for the experiences her daughter and family faced.

‘I deserve answers, I’m a human being’

In February 2022, the Federation of Sovereign Indigenous Nations (FSIN), a political organization based in Saskatchewan representing 74 Indigenous communities, announced along with Indigenous Services Canada the development of a new First Nations Health Ombudsperson’s Office. It is the first of its kind in Canada.

“It will be a completely standalone institution created by FSIN to deal specifically with the discriminatory practices within the health-care system,” says David Pratt, vice-chief at FSIN, who recalls hundreds of reports of discriminatory incidents to the organization prompting the creation of the new office.

The office is expected to officially open at the end of June.

Pratt says that even family members like Joyce can file a complaint with the ombudsperson’s office.

“We'll work with Joyce's family to ensure that treatment like that doesn't happen anymore,” says Pratt, adding the new office will also work with self-regulating bodies such as the College of Physicians and Surgeons of Saskatchewan.

According to Betty Nippi-Albright, Saskatoon MLA and Saskatchewan NDP opposition critic for Métis and Indigenous relations, the new ombudsperson office isn’t enough.

“If there's no accountability, if there's no evaluation of effectiveness or willing to change it … this is what always happens, and this is part of [the] status quo,” says Nippi-Albright.

“There needs to be co-ordination within government as well as with these nations, and there needs to be an evaluation component.”

Learning for the first time about the new ombudsperson in an interview with Surviving Hate, Joyce says she plans to file a complaint.

“I will try anything to resolve it, to have peace of mind … I deserve answers, I’m a human being,” says Joyce.

Danielle Orr is a freelance multimedia journalist, producer and former private investigator (open-source intelligence) based in Ontario. Her work has appeared in The Social (CTV), the Toronto Star, Canada’s National Observer, Canadaland, The Local and the Investigative Journalism Bureau. Danielle has an honours bachelor’s in criminology and socio-legal studies from the University of Toronto and graduate certificate in new media journalism from Sheridan College.

Martha Troian is an investigative journalist and producer who has worked with and contributed to media outlets across North America. She practises investigative journalism, data journalism, radio and online storytelling. Experienced in both mainstream newsrooms and reporting independently, Martha has been involved with small- to large-scale collaborative projects that focus on data journalism, Indigenous politics, environmental issues, justice and human rights issues. She has a master of journalism from Carleton University with a specialization in broadcast journalism, and a master of journalism from the University of King’s College with a specialization in investigative journalism. Martha is originally from Obishikokaang (Lac Seul First Nation).

Janice Saji is project assistant with Humber College's StoryLab as well as Humber Press. She completed her postgraduate studies in journalism at Humber College in Toronto. She previously worked as an intern journalist at The Hindu in India, writing stories covering crime, art and science. When she’s not busy chasing stories, you can find her stalking the neighbourhood cats and binge-watching standups.

Research credits: Kunal Chaudary, Stephanie Roberts, Nitika Mishra and Jianfu Lan

Helplines:

The Hope for Wellness Help Line is available to all Indigenous Peoples across Canada and provides immediate mental health crisis intervention and support 24/7. The service is available by phone at 1-855-242-3310 online chat on its website: https://www.hopeforwellness.ca/.

For those living in the North, Kamatsiaqtut Helpline offers 24/7 confidential mental health support and can be reached at 1-800-265-3333. Volunteers speak English, Inuktitut and French.

To view other mental health helplines in your province or territory, you can visit the following links:

https://manynations.com/group-benefits/mental-health-resources

https://humberstorylab.ca/projects/surviving-hate/

Surviving Hate is a multi-year investigation into how racism, hate and discrimination affect Canadians. If you have experienced an incident involving racism or discrimination, you can also take the Surviving Hate survey.

Surviving Hate is a collaborative journalism project co-ordinated by Humber College's StoryLab seeking to fill the data gap on the reporting of hate crimes in Canada, with a focus on anti-Indigenous racism. Academic partners include the Investigative Journalism Bureau, Algonquin College, Trent University, the University of King’s College, Toronto Metropolitan University, Carleton University and the Centre for Human Rights Research at the University of Manitoba. Our media partners are Canada’s National Observer, the Toronto Star, TVOntario and JSource. Surviving Hate is supported by the Inspirit Foundation, Google News Initiative, Journalists for Human Rights and Humber College’s Office of Research and Innovation and Faculty of Media and Creative Arts.