May 1, 2019

Democracy in health care: The healing power of equality

A lot can be said about a society based on how they care for their weakest members. So how are Canadian democratic ideals reflected in our health-care systems?

I recently attended the wedding of a Syrian friend in Calgary, and was sitting with guests who were new to Canada. Conversation drifted to the history of Indigenous relations in Canada, and I mentioned that these relations were, to put it mildly, problematic.

Why? The guests wanted to know.

I explained about reserves. The Sixties Scoop. Residential schools.

There was a long silence.

"But this is Canada," one of my table-mates said. "I thought…"

The sentence was left hanging, but I filled it in silently. "You thought this was a country where everyone was treated with respect. You thought everyone was treated fairly. You thought this was a democracy."

Deep down, how democratic are we?

Democracy is about more than how we vote. If you look up the word in the Oxford English Dictionary, you’ll find the expected “government by the people” definition. But keep reading and you’ll also find this:

“[A] form of society in which all citizens have equal rights, ignoring hereditary distinctions of class or rank, and the views of all are tolerated and respected; the principle of fair and equal treatment of everyone in a state, institution, organization, etc.”

These are democratic ideals, and we like to think we have them in Canada. But you don’t have to dig far to find that the ways we live up to (or don't live up to) our ideals are less than ideal.

You’ll find the Quebec City mosque shooting of 2017. You’ll find rising rates of hate crimes. You’ll find alarming suicide rates for Indigenous youth.

A humbling process of improvement

In recent years, Canada has been taking a long, hard look at its ideals, getting our problems out in the open and trying to ensure our democratic principles apply to more than just our voting system. For example, the Truth and Reconciliation Commission (TRC), or the passing of M-103, a non-binding motion condemning Islamophobia and religious discrimination.

But what about our health-care system? Are all patients treated with respect, tolerance and fairness?

In UCalgary's Faculty of Nursing, Dr. Aniela dela Cruz, PhD, and instructor Heather Bensler aim to expose inequities in our health care system, focusing on those related to Indigenous Peoples as well as  newcomers living with HIV. Their work shows that by understanding the context of people whose lives are marked by complex social and political factors, those in health care can provide stronger, more equitable support.

Making health care democratic

Heather Bensler is the co-director of Indigenous Initiatives in the Faculty of Nursing. It’s her job to ensure her faculty responds appropriately to the TRC Calls to Action related to health and nursing education.

Call 18 is the first call related to health:

“We call upon the federal, provincial, territorial, and Aboriginal governments to acknowledge that the current state of Aboriginal health in Canada is a direct result of previous Canadian government policies, including residential schools, and to recognize and implement the health-care rights of Aboriginal people as identified in international law, constitutional law, and under the Treaties.”

In response, Bensler helps nursing instructors and students foster new perspectives on Indigenous Peoples, and to move toward a more democratic future for health care.

Walking a country in Indigenous shoes

“The first thing you need to understand is that for Indigenous Peoples, health care has historically not been a safe place,” says Bensler. For example, many First Nations community members have memories of what used to be called "Indian hospitals," the last of which closed in the 1990s. These hospitals were racially segregated, and, like residential schools, were a tool for assimilation. They replaced traditional healing methods with principles of biomedicine.

“In the days of the Indian hospitals,” says Bensler, “if you left your First Nations community looking for health care, your family might never know where you went. And sometimes you never came back.”

So looking at health care through Indigenous eyes means realizing it was never neutral, and still isn't. The Wellesley Institute report, First Peoples, Second Class Treatment, shows that racism is rampant within Canada’s health-care system today. In fact, some Indigenous patients avoid the health-care system altogether, knowing its penchant for discrimination.

However, says Bensler, “there are things we can do to make health care a safer place for Indigenous Peoples and ensure they have a stronger voice.”

Reaching out for cultural safety

As a starting point, Bensler educates nursing students to understand cultural safety. “This means thinking about the historical context of the patient,” says Bensler. “And recognizing a nurse’s position of power when treating Indigenous patients.”

Here’s how cultural safety might apply in a hospital setting: say you’re a non-Indigenous nurse working in a neonatal intensive care unit, and the mother of one of your patients has yet to arrive on the scene. “The first reaction shouldn’t be judging that mother,” says Bensler. “It should be figuring out how best to support her. And recognizing she might experience barriers and challenges that are hard for a non-Indigenous person to understand.”

Removing judgment from the process involves questioning assumptions about Indigenous Peoples. “To do that, non-Indigenous Canadians need to understand the effects of colonization,” says Bensler, “and that non-Indigenous nurses play a role in colonialization. It’s learning to take an active role in reconciliation.”

Learning beyond the books

Bensler likes to call this role “reconciliaction," an idea her students embrace.

“They don’t just want to learn about Indigenous relations in class,” says Bensler. “They want to live and breathe cultural change.”

One of the first activities students encounter is the KAIROS blanket exercise. Students literally walk through the history of Indigenous/settler relations in Canada, stepping across blankets that represent parcels of land affected by treaty-making, colonization and resistance.

“It’s like we give them a pair of glasses so they can understand the impact of colonization,” says Bensler. “Students look at pre-contact times and see that there was education, health care and governance.”

Bensler also injects Indigenous programming into the clinical placements that give students hands-on nursing experience. During the winter, 2019 term, 40 of the 140 second-year students participated in placements with an Indigenous focus.

One set of students was based at the Elbow River Healing Lodge, a primary care clinic offering traditional healing services for Indigenous patients, located in Calgary’s Sheldon Chumir Centre. These students assessed the entire Chumir Centre, analyzing the availability of services tailored to Indigenous Peoples, and the barriers to access for those services. “Their goal was to create awareness and build relationships between the healing lodge and all the other agencies in the Chumir Centre,” says Bensler.

Bensler feels hopeful about the future. “Nurses coming out of our program will be more confident about disrupting racism. They can make a difference in the lives of all people who have some sort of difference,” she says.

Equity for newcomers living with HIV

Another form of racism in health care is experienced by African newcomers to Canada who live with the human immunodeficiency virus (HIV). They often face stigma attached to HIV, and this stigma is particularly complicated for immigrants hailing from sub-Saharan Africa. There, the HIV narrative is all about history — centuries of systemic racism and colonialism.

HIV is a unique public health concern with a complex cultural past. If left untreated, it can lead to acquired immune deficiency syndrome (AIDS), which can be fatal. And although there are effective ways to prevent and treat HIV, it retains some of the discriminatory baggage acquired during the 1980s, when fear and misinformation brought the AIDS crisis to a feverish pitch. According to the Canadian Foundation for AIDS research, the stigma around HIV still plays a role in some of the one million deaths per year worldwide due to AIDS-related causes.

So it’s not surprising that the stigma of HIV clings to newcomers when they settle in Canada, and it can affect the way they seek treatment for HIV.

Mandatory testing for HIV and the potential for stigma

Dr. Aniela dela Cruz, PhD, wants to ensure the democratic ideal of fair and equal treatment applies to people with an HIV diagnosis who immigrate to Canada. She studies the stigma experienced by newcomers who live with HIV, focusing on those from sub-Saharan Africa. Dela Cruz’s research also investigates newcomers’ experiences as they go through the Canadian Immigration Medical Examination (IME) process a key part of the immigration journey.

According to dela Cruz, this journey inevitably starts from a place of global health inequity if it begins in sub-Saharan Africa: because HIV is endemic in their home countries, newcomers from this part of the world have an incidence rate 6.3 times higher than that of other Canadians (UNAIDS).

HIV stigma and the immigration medical exam

Dela Cruz is finding that HIV stigma is compounded by the mandatory HIV screening process, which is conducted as part of the Canadian immigration medical exam, and often takes place in the applicant’s home country. Dela Cruz and a team of Canadian colleagues, including AIDS service organizations, settlement organizations, people living with or affected by HIV, and researchers, study the medical exam and its effects on applicants.

“The federal government outlines standards for the exam,” says dela Cruz. “Physicians conducting an HIV screen test should make sure the person is informed about the test, and provide counseling before and after the test.”

This counseling is crucial, particularly for people in sub-Saharan countries, where HIV is unlike any other diagnosis. “There is such powerful fear,” says dela Cruz. “For some there is a religious component that implies you’ve done something immoral. We hear stories of people wanting to commit suicide after a diagnosis.”

Counseling can soften the blow, but dela Cruz’s research shows that pre- and post-test counseling is erratic at best during the exam. “Some people aren’t even aware the test is being done,” she says. The diagnosis, which is often devastating, is even more devastating when the test is unanticipated. 

“Imagine you are moving to a new country, and you’ve just been given a life-changing diagnosis,” says dela Cruz. “The physician hands you a two-month supply of meds and you say to yourself: What do I do now?”

Border-crossing stigma

After immigrants who live with HIV arrive in Canada, the stigma continues. “Even the most well-intentioned social worker or health-care provider can create stigmatizing circumstances without knowing it,” says dela Cruz.

She recalls one young gay man who came to Canada as an HIV-positive refugee. “Social workers pushed him to go out and socialize,” she says. When he joined a local church group, the community realized he was gay. “He ended up feeling persecuted and discriminated against here in Canada, too,” says dela Cruz. “We sometimes don’t realize how pervasive stigma is in Canada, and how it’s linked to other types of discrimination.”

This sort of social alienation can prevent people from seeking proper health care in their new country. If newcomers living with HIV aren’t supported as they settle in Canada, they may temporarily fall out of the HIV-care system.

“This is why it’s important to gain insight into the immigration process around HIV screening,” says dela Cruz. “We want to be sure they have the medical and psychosocial support they need.” The stigma newcomers feel due to their HIV diagnosis may result in marginalization. “But newcomers living with HIV have every right to live healthy and productive lives, just like other Canadians,” says dela Cruz.

She and her team of researchers have connected with Immigration, Refugees and Citizenship Canada (IRCC), hoping to influence practices and policies around immigrants’ medical exams. “They are very open to hearing about our work,” she says, “so we will continue to nurture that relationship. There is good work still to be done.”

Living up to democratic ideals

Critiquing our health-care system is difficult work; it can reveal some embarrassingly undemocratic practices. So I can’t tell my Syrian friends that Canada’s democratic principles are perfect pillars of our society. But I can tell them that these principles are being scrutinized in the spirit of transparency and improvement.

As academics like dela Cruz and Bensler expose the racism and stigma lingering in health-related practices, they demonstrate the need to understand the context of those who don’t always benefit from democratic ideals like equity and fairness. And the need to be part of the solution. “Ultimately, it’s about learning to question your assumptions,” says Bensler. “Because if there are health and education disparities, it’s our responsibility to participate in change.”


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ABOUT OUR EXPERTS

Heather Bensler is an instructor and co-director of Indigenous Initiatives in UCalgary's Faculty of Nursing. Heather has worked in South America developing medical training programs with indigenous leaders that continue to be used in South America, Africa and South East Asia. Heather is passionate about global health, obstetrics, and nursing education. Read more about Heather

Dr. Aniela dela Cruz, PhD, is an assistant professor in UCalgary's Faculty of Nursing. Her research interests include population health promotion and public health, social determinants of health, infectious disease prevention, health of migrants, including marginalized immigrants, health of Indigenous Peoples, and community-based research. Read more about Aniela

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