An Inuit Approach to Cancer Care Promotes Self-Determination and Reconciliation

For thousands of years, Inuit have adapted to the changes in their environment, and continue to find new and innovative ways to survive. 

But life expectancy among populations in Inuit Nunangat (the traditional territory of Inuit in Canada) is an average of 10 years less than that of the general Canadian population.

Cancer is a leading cause of this disparity. Inuit experience the highest mortality rates from lung cancer in the world, and mortality rates of some other cancers continue to increase disproportionately.

Inuit communities tend to be self-reliant and are renowned for working together for a common goal, which is evident in their self-governance and decision-making activities. They have also endured a long history of cultural insensitivity and negative health-care experiences that span generations

Map of Inuit Nunangat (Inuit Regions of Canada) (Inuit Tapiriit Kanatami)

The ways the Canadian health-care system interacts with Inuit populations plays an important part in this health disparity. And there is an urgent need for Inuit to be able to access and receive appropriate health care. 

Elder Peter Irniq speaks about the remarkable Inuit capacity for survival in extreme conditions

In 2015, the Truth and Reconciliation Commission of Canada (TRC) report made 94 recommendations in the form of Calls to Action. Seven of these Calls to Action specifically relate to health. They explain the importance of engaging community members, leaders and others who hold important knowledge in the development of health care.

As members of a team of Inuit and academic health-care researchers, we have been working with health-system partners to support Inuit in cancer care. We focus on enhancing opportunities for Inuit to participate in decisions about their cancer care through the shared decision-making model, in a research project we call “Not Deciding Alone.”

We travel thousands of miles for cancer care

Our collective success in addressing the TRC Calls to Action will require health research to focus on addressing the health-care inequities experienced by Inuit, First Nations and Métis populations in ways that take action to promote self-determination. 

This is important as current health-care models do not often support Indigenous values, ways of knowing and care practices.

Poor cultural awareness in our mainstream health-care systemsdiscourages Indigenous people from seeking care and engaging with health services. It increases the risk that Indigenous people will encounter racism when seeking care. 

Small boats make their way through the Frobisher Bay inlet in Iqaluit on Aug. 2, 2019. THE CANADIAN PRESS/Sean Kilpatrick

There are many documented instances of our health-care system’s failure to provide appropriate health care to Indigenous people, due to unfair assumptions and demeaning and dehumanizing societal stereotypes.

These health system failures discourage people from seeking care, and have resulted in death, as in the case of Brian Sinclair,who died after a 34-hour wait in a Winnipeg hospital emergency room in September 2008.

There can also be significant physical barriers to care for Inuit. Critical health services such as oncology specialists and treatments are often located in urban centres such as Ottawa, Winnipeg, Edmonton, Montréal and St John’s, thousands of kilometres away from remote communities in Inuit Nunangat. This leaves many Inuit negotiating stressful urban environments, dealing with cultural dislocation and navigating complex health systems without the benefit of community support networks.

People must fly out of remote communities for cancer treatment. (Alex Hizaka), Author provided

During our research, an Inuit peer support worker explained what it can be like for those who travel far from their family and community for their care: 

“People come with no idea of why, and we are having to bridge two worlds for them. Often patients have no idea why health-care providers tell them to get on a plane, and then they think they are coming for treatment for three days and then it becomes two weeks. It is a tough situation as often people have no money, no support. People need to be able to explain their situation and how it is for them. People need to know that they are not alone.”

Research shows that these geographical challenges significantly impact access to health care and are often exacerbated by language barriers. Together these factors may make people vulnerable to additional harms unrelated to the health conditions for which they seek treatment.

Patients and health-care providers work together

Shared decision-making is an important evidence-informed strategy that holds the potential to promote patient participation in health decisions

In this model, health-care providers and patients work togetherusing evidence-based tools and approaches and arrive at decisions that are based on clinical data and patient preferences— to select diagnostic tests, treatments, management and psycho-social support packages. 

Shared decision-making is considered a high standard of carewithin health systems internationally and it has been found to benefit people who experience disadvantage in health and social systems. 

Shared decision-making has also been found to promote culturally safe care, and has the potential to foster greater engagement of Inuit with their health-care providers in decision-making. 

The concept of cultural safety was developed to improve the effectiveness and acceptability of health care with Indigenous people. Culturally safe care identifies power imbalances in health-care settings — to uphold self-determination and decolonization in health-care settings for Indigenous people. 

The aim of a shared decision-making approach is to engage the patient in decision-making in a respectful and inclusive way, and to build a health-care relationship where patient and provider work together to make the best decision for the patient.

Most importantly, our approach has emphasized ways of partnering that align with the socio-cultural values of research partners and community member participants, both to develop tools and create approaches to foster shared decision-making. The term “shared decision-making” translates in Inuktitut to “Not Deciding Alone” and so that is the name of our project.

The results are outcomes that Inuit are more likely to identify as useful and relevant and that respect and promote Inuit ways, within mainstream health-care systems.

Self-determination through Inuit Qaujimajatuqangit

Our research uses the guiding principles of Inuit Qaujimajatuqangit — a belief system that seeks to serve the common good through collaborative decision-making — as the foundation for a strengths-based approach to promote Inuit self-determination and self-reliance. 

Inuit Qaujimajatuqangit principles have been passed down from one generation to the next and are firmly grounded in the act of caring for and respecting others. 

There is important learning taking place within academic and health-care systems that involves deepening understandings of what “patient-oriented care” means. We need to learn how to do research in partnership with those who are the ultimate knowledge users in cancer-care systems — patients.

In our work, Inuit partners and community members are leading the development of shared decision-making tools and approaches, building on their strengths and resiliency. Our research and health systems are beneficiaries of these partnerships that hold potential to create health care that is welcoming and inclusive for all. 

With guidance and support from Inuit and more broadly, from Indigenous partners, we are learning how to take action on the TRC recommendations, and to make respect and kindness integral to best practice in research and health care.

Janet Jull is a Assistant Professor, School of Rehabilitation Therapy, Queen's University, Ontario

THIS ARTICLE WAS ORIGINALLY PUBLISHED ON THE CONVERSATION

Oil Wars: The Significance of Small Battles for Land Rights Against Major Oil Companies

The complexity of the oil industry and the massive influence of big money over environmental and public health decisions often leaves the small battles to be squashed before they have seen the surface. But recent fights over land rights, have led to some large victories. Home owners, environmental groups, and tribes have all made strides against companies in their area; can these local battles gain headway on a national level?

Flag at a protest for the construction of the Dakota Access Pipeline. Becker1999. CC-BY-2.0.


Oil has hit a cornerstone between immense support from Trump’s administration and increasing heat from environmental activists. Often oil companies are in the news when facing massive consequences for oil spills. But, people that live near drilling sites or along pipelines can face health effects and unfair treatment from corporate and government agencies every day.

 The biggest culprits are often in rural areas where people are dependent on the land for their livelihood. For example, a pipeline being built from western Texas to the Gulf cuts straight through Hill Country and the ranches there. This is even true for areas designated as private conservation land that is supposed to be protected from any development. The building raises concerns for environmental, aesthetic, and public health reasons.

 The same problem is found in West Virginia, where pipeline development cuts through private homes. If the owners refuse to sell their land, it can be taken legally through Eminent Domain. This will continue to become more popular in the next 15 years as there is an estimated 26,000 miles of new gas pipelines to be built. People are starting to sue to bring the problem to the Supreme Court. The increased danger of living next to a pipeline can lead to cancer, contaminated drinking water, and increased dangers if the line were to break or become damaged.

 One of the biggest groups fighting against pipelines are native tribes. The Sioux gained attention at Standing Rock while fighting the production of the Dakota Access Pipeline. In the Upper Midwest, rights to Line 5 are being revoked on reservations. In Alaska, Inuit tribes are fighting drilling in the Arctic National Wildlife Reserve (ANWR) which has been opened up to drilling for the first time under the Trump administration.

 The ANWR and the Arctic are thought to be some of the largest untapped oil reserves in the world. Climate change has increased access to areas of the region that couldn’t be reached before, yet the environmental risk of drilling and transporting in an extremely unique and fragile ecosystem has led to a lot of resistance. In the ANWR, drilling is thought to upset Caribou migration and breeding grounds, which the local people rely on as a food source and cultural significance.

 In the US, it often seems like these fights always end in the same way, but in Ecuador and Canada tribes have main significant gains against drilling. In the Amazon, the Waorani won a landmark case against the Ecuadorian government that was trying to open the rainforest to mining. The government hoped to bring more cash into the country but would do so at a huge environmental and cultural cost. One that the Waorani wouldn’t allow. The area covered 7 million acres of Indigenous land. The Waorani said that is about more than the land but instead about a way of living that supports the lives of others.

 In Canada, fights against seismic blasts to find offshore oil reserves had great success to protect the local ecosystem. The local Inuit of Clyne River joined with Greenpeace and grassroots environmental movements to bring it to national attention. Now Arctic off-shore blasting has seen its final days. There are great strides to be made by fighting the daily impacts of oil and gas drilling. If anything, increasing drilling and pipeline construction is continuing our dependence on one of the most carbon-dense energy sources in the world.

DEVIN O’DONNELL’s interest in travel was cemented by a multi-month trip to East Africa when she was 19. Since then, she has continued to have immersive experiences on multiple continents. Devin has written for a start-up news site and graduated from the University of Michigan with a degree in Neuroscience.

Canadian Inquiry Comes to a Close, Revealing Systematic Mistreatment of Indigenous Women

Three years in the making, the final report calls on authorities to institute a paradigm shift in policing practices.

Ottawa vigil for missing and murdered aboriginal women in 2014. Obert Madondo. CC BY-NC-SA 2.0

Over the past three years, Canada has held 24 hearings and events, engaged with more than 2,380 citizens, and spent $92 million on a massive national inquiry into the murders and disappearances of Indigenous women and girls—who make up less than 4 percent of Canada’s female population but a whopping 16 percent of females killed in the country annually. On June 3, the harrowing process came to a close, culminating in a conclusion as decisive as it is unsettling: The Canadian government and civil society is complicit in perpetrating what amounts to genocide.

Justin Trudeau giving a speech on missing and murdered Indigenous women in 2016. Delusion23 via Wikimedia Commons. CC BY-SA 4.0

At the closing ceremony in Gatineau, Quebec, Indigenous youth presented the final report, wrapped in a traditional cloth, to Prime Minister Justin Trudeau. All told, the report is over 1,200 pages long and includes 230 recommendations. It describes a historical failure on the part of the police and the criminal justice system, systems that have ignored the concerns of Indigenous women and viewed them “through a lens of pervasive racist and sexist stereotypes”—behavior that has in turn fostered mistrust of the authorities among the Indigenous population. In beginning to mitigate these chronic injustices, the report suggests, authorities should expand Indigenous women’s shelters and improve policing in Indigenous communities; increase the number of Indigenous people on police forces; and empower more Indigenous women to serve on civilian boards that oversee the police.

In addition, it calls for a shift in the criminal code to classify some killings of Indigenous women by spouses with a history of violent abuse as first-degree murder, regardless of premeditation. Addressing the less tangible issue of cultural discrimination, the report also requested that the federal and provincial governments afford Indigenous languages the same status as Canada’s official tongues of English and French.

Regardless of future success in creating a safer and more equitable situation for Indigenous women, helping Canadians understand the historical narrative of violence will remain crucial. As such, the report addresses teachers and post-secondary institutions, asking them to educate the public about missing and murdered Indigenous women and the root causes of their plight, and to bring attention to the state laws, policies, and colonial practices that catalyzed the genocidal conditions. In an interview for Quartz, Carol Couchie, co-chair of the National Aboriginal Council of Midwives, spoke to the lasting effects of structural discrimination: “Family structure has broken up, tribal structure has broken up, leadership has been weakened, the self-esteem has been reduced to on the ground, and these things have all affected our ability to care for young people, to care for women.” Marion Buller, chief commissioner of the inquiry and a retired Indigenous judge, expressed a similar sentiment in her succinct statement to the New York Times: “An absolute paradigm shift is required to dismantle colonialism in Canadian society.”

Woman performing at 2017 National Aboriginal Day in Regina. Ted McGrath. CC BY-NC-SA 2.0

Trudeau, for his part, guaranteed a thorough review of the report, and committed to creating a National Action Plan “with Indigenous partners to determine next steps.” Yet even with promises of legislative change, some Indigenous Canadians point to harmful attitudes that may undermine the reality of reform on the ground. For instance, according to the Royal Canadian Mounted Police, most of the violent crimes against Indigenous women are perpetrated by people within their own communities—a statistic that, according to Indigenous author Niigaan Sinclair, “has become the linchpin for arguments that murdered and missing Indigenous women and girls are not a Canadian problem, but an Indigenous one.” In a piece for the Winnipeg Free Press, Sinclair notes that former minister of Aboriginal affairs Bernard Valcourt used this argument to refute the prospect of the inquiry in the first place, and addresses the systemic factors that invalidate Valcourt’s position: “Indigenous women and girls do not join the ranks of the murdered and missing because of Indigenous men, but because of the contexts they are in. Most of these are dangerous situations imposed from circumstances brought on by poverty, abusive cycles and systems, and oppression.”

The REDress Project, on display in Winnipeg, serves as a reminder of missing and murdered Indigenous women. Ted McGrath. CC BY-NC-SA 2.0

Still, the very existence of the report and the promises of action it has engendered are cause for optimism, however cautious it might be. In a piece for The Conversation, Margaret Moss describes her disappointment as an American Indian woman who recently moved to Canada and has observed the same racism in the United States’ northern neighbor as she did back home. Yet her viewpoint as an American also lends her perspective and a sense of hope. “[C]ompared to the lack of moral outrage in the U.S. on this issue, I am [made] hopeful by the very fact that in Canada, after much activism, such a committee was formed and a report of the findings were released with a bold statement,” Moss writes. “Maybe this will shake people out of complacency.”





TALYA PHELPS hails from the wilds of upstate New York, but dreams of exploring the globe. As former editor-in-chief at the student newspaper of her alma mater, Vassar College, and the daughter of a journalist, she hopes to follow her passion for writing and editing for many years to come. Contact her if you're looking for a spirited debate on the merits of the em dash vs. the hyphen.









Indigenous Communities in Brazil Protest Encroachment on Land Rights

The annual Free Land protest takes on a new sense of urgency under Bolsonaro’s far-right government.

Photo of the Brazilian flag by by Rafaela Biazi on Unsplash.

Last week, more than 4,000 indigenous people from over 300 tribes across Brazil gathered in Brasilia to set up camp in front of government buildings for three days of cultural celebrations and protest.

While the Free Land protest is an annual event, it has taken on a new significance this year under president Jair Bolsonaro and his far-right government’s encroachment on the rights of native people and their territories. Al Jazeera writes that according to The Articulation of the Indigenous People of Brazil (APIB), the central organizer of the gathering, this year the event occurs in a "very grave context".

Recently, Bolsonaro promised to stop the development of new indigenous reserves, and to revoke the protected status of established land reserves. Bolsonaro has even gone so far as to publicly question the need for indigenous reserves at all.

The Guardian writes that among the new far-right government’s projects is a movement to enable commercial farming and mining on indigenous reserves. One of the reserves targeted is the Yanomami territory, Brazil’s largest reserve which already experiences threats from illegal gold miners.

“We are defenders of the land, we are defenders of the Amazon, of the forest,” Alessandra Munduruku, one of the representatives of the Munduruku tribe told the Guardian. “The white man is [...] finishing off our planet and we want to defend it.”

Instead of directly handling the demarcation of Brazil’s indigenous reserves, the government has given the project to the agriculture ministry, a branch controlled by the farming lobby, a powerful organization which has been known to oppose indigenous land rights (Guardian). Joenia Wapichana, the first indigenous congresswoman in Brazil, told Al Jazeera that during her time in office she had become aware of just how deeply the government was to indigenous rights. “The government is completely anti-indigenous,” she said, “[Jair Bolsonaro] is only open to those who defend mining and land grabbing, which is his intention.”

After days of encampment outside government buildings, indigenous groups began their annual march last friday. Protestors wore body paint and feathered headdresses, while beating beating drums and holding bows and arrows (Reuters).

The Guardian writes that last week Bolsonaro’s justice minister Sérgio Moro, requested the presence of Brazil’s national guard at the event, foreshadowing possible clashes with protestors. While Moro said that the guard would be working to “secure the public order and the safety of people and patrimony,” the guard said in a statement to Al Jazeera that it would use force “if necessary” to protect the “safety of the patrimony of the Union and its servers.”

In response to growing concern, the APIB released a statement saying that “our camp has been happening peacefully for the past 15 years to give visibility to our daily struggles. [...] We are not violent, violence is attacking our sacred right to free protesting with armed forces.”

In a statement to Reuters, David Karai Popygua, a native person from the state of Sao Paulo, summed up what is at stake for protestors. “Our families are in danger, our children are under threat, our people are being attacked,” he said. “In the name of what they call economic progress they want to kill our people.”

EMMA BRUCE is an undergraduate student studying English and marketing at Emerson College in Boston. While not writing she explores the nearest museums, reads poetry, and takes classes at her local dance studio. She is passionate about sustainable travel and can't wait to see where life will take her.

 



Health Care Inequalities Impact Indigenous Communities

What are the Effects of Racism In Health Care Delivery in Canada and the US?

Research released the week of July 1 suggested health care inequalities among indigenous communities extended beyond the Northwest Territories’—where around half the population is indigenous—to all of Canada. The research says racism, in particular implicit racism, has contributed to unnecessary deaths among indigenous communities. Dr. Smylie, a Métis doctor and researcher, commented that “the most important and dangerous kinds of racism that people encounter is actually racism that's hidden.”

Yet implicit racism is not new: it has been the focal point of past studies, most notably the 2015 Wellesley Institute study “First Peoples, Second Class Treatment” also led by Dr. Smylie. The study suggested indigenous people either strategized their visits or avoided care completely due to the frequency of experienced racism. Such racism was commonly felt in a “pro-white basis,” according to Dr. Smylie, and negative stereotypes that originated in colonial government policies like segregation.

Michelle Labrecque’s prescription for severe stomach pain was merely a message to not drink (source: CBC news).

The findings of the 2015 Wellesley study underlined the unnecessary death of elder Hugh Papik in 2016. Even though Papik did not have a history of drinking, Papik’s stroke was mistaken for drunkenness. His death prompted an external investigation that made 16 recommendations for the Government of the Northwestern Territories. Four of the recommendations focused specifically on fostering relations between indigenous communities and health care professionals. All but two were adopted.

The recommendations included training staff—“policies for implementation of mandatory and ongoing culture safety training… in partnership with the Indigenous community”—in hopes of breaking down the root issue of systemic racism by confronting stereotypes. According to health minister Glen Abernethy, training will do so by incorporating information about the different cultures of the territory as well as a history of colonization for non-indigenous staff. In addition to the training, Abernethy hopes to increase the number of indigenous staff in the future by encouraging young locals to pursue medical careers so that they might return and serve their communities.

However, the messy entanglement of racism and health care is not unique to Canada. A 2017 survey by NPR, the Robert Wood Johnson Foundation, and the Harvard T.H. Chan School of Public Health found 23% of Native Americans faced discrimination when “going to [the] doctor or health clinic” in the US.  

Even though the US federal government is obligated, through treaty agreements, to provide for the health of Native Americans, the IHS itself is too underfunded to provide adequate care. A 2014 study stated that “Long-term underfunding of the IHS is a contributing factor to AI/AN health disparities.”  Indeed, for people like Anna Whiting Sorrell who have struggled to get treatment in the past, it is no surprise that “a lot of American Indians simply put up with …“‘tolerated illness.’” Other care alternatives are also difficult to access as the American health care system makes it hard for many Native Americans to obtain care in the private sector.

Cartoon depicting the waiting room of an IHS facility-- and the struggles of the system (Source: Marty Two Bulls).

And while some communities have successfully started looking inwards at traditional forms of healing and eating to improve health, it is evident that many are doing so because outside systems of support are inadequate or nonexistent. Although Canada is actively trying to address inequalities in its health care, the US has yet to do so.

 

TERESA NOWALK is a student at the University of Virginia studying anthropology and history. In her free time she loves traveling, volunteering in the Charlottesville community, and listening to other people’s stories. She does not know where her studies will take her, but is certain writing will be a part of whatever the future has in store.

Bridging the Inequality Gap for Panama’s Darién Province

Photo by Katie Chen on Unsplash

The Gallup-Healthways Global Well-Being Index has ranked residents of Panama as the leaders in “well-being” for two consecutive years. However, three weeks in communities of the Darién province exposed me to the destitution and gubernatorial neglect that blankets this eastern region. Inhabitants of the Darién have been stigmatized, leaving them without access to clean water, health care facilities, or economic opportunity. My experience led me not only to question the validity of the Index, but also to consider the ways we can empower a forgotten sub-population.

“A little further down the road, you’ll find that it comes to an end,” my local Panamanian guide remarked while en route to the compound where we reside for the following three weeks. At the time, the idea of a place with no road was beyond comprehension. How could people stay connected? How could they receive supplies? The answer to these questions is simple —they don’t.

Soon after arriving in Panama, I began to comprehend the “Darién Gap” which is a 99-mile swath of undeveloped swampland and forest located within Panama’s Darién province — a symbol of the many development projects that have been discontinued in the region over the past decades. I found that the double-edged sword of indigenous isolation offers cultural preservation on one side, clean water and healthcare deficiencies on the other.

The border between Panama and Colombia is the only one in the world that remains unpaved! While the decision to stop construction of the Pan-American Highway provided benefits to some groups, such as law enforcement officers against drug traffickers and indigenous inhabitants of the Gap who wish to preserve a traditional lifestyle, it also resulted in neglect of an entire region. With the fastest-growing economy in the Americas, Panama now has an opportunity to improve the quality of life for all of its citizens. Yet, despite the recent boom, the nation has the greatest economic inequality in the Americas with nearly 40 percent of the country living in poverty. Many of those who endure economic destitution live in the eastern half of the country, particularly in the Darién. 

My three weeks in Panama were dedicated to community visits throughout this beleaguered province. We met with officials and members of individual households, and conducted surveys to determine the accessibility to fundamental necessities, such as clean water, health care, and education. I was an intern for a nonprofit based in Panama City, but which conducts most of its projects with American undergraduates serving communities of the Darién. This nonprofit creates partnerships with communities located in proximity to a road or a rocky pathway that Panamanian officials call highway. More indigenous groups are sheltered within the Darién Gap, undisturbed and unacknowledged.

According to community members who responded to our surveys in July 2014, lack of access to clean water is the main problem affecting daily life for an appreciable number of residents in the Darién province. Although the Panamanian government’s Ministry of Health is responsible for water distribution by means of aqueduct systems, complications such as project incompletion, water shortages, pipeline damages, and contamination from pesticides/animals inhibit achievement of the goal. Residents described complex, inconsistent, and seasonally based methods for receiving water. In the past, families might go two months without water when a government-constructed pipeline to a water tank is broken. When water finally arrives, it will sometimes come out dirty or contaminated from passage through farmland. 

Photo by Aljoscha Laschgari on Unsplash

Observation and conversation with members of various communities taught me that collaboration between locals and external, resource-rich groups has been a driver for successful growth in this area. Yet, one person I met described the Darién province as “the temple of abandoned development projects” for the number of missionary and nonprofit groups that have attempted and failed to provide assistance to families in the greatest need. In an indigenous community named Emberá Puru, I noticed little blue water filters strewn about the property. The leaders explained that a missionary group had provided over 100 filters, but not explained how to use them. The group left after a week of what could be described as “voluntourism” — volunteering abroad that resembles a tourism opportunity — and the community was left with pieces of plastic polluting the land.

The neglected Darién province is not a unique case. Panamanians from other parts of the country (like Panama City) expressed surprise and/or distaste when my group revealed we were working in this eastern region. These people hold onto misconceptions, such as the idea that the Darién is filled with dangerous members of drug cartels or that it’s a completely unlivable swampland.

While the “Darién Gap” might lack a constructed road, the population of this area has done its best to overcome deficiency through resiliency. When a government or its people show indifference toward improving the lives of an entire population sector, outside measures need to be taken to reduce inequality. However, these outside measures should also be performed through culturally conscious and responsible mechanisms in order to achieve sustainable success. No clear-cut solution exists to resolve problems such as clean water, healthcare, and education inaccessibility in the Darién province, Panama. However, creative and collaborative efforts have the power to mediate substandard conditions and to catalyze change one household at a time.

SARAH SUTPHIN

Sarah is an undergraduate at Yale University and a content editor for CATALYST. As a traveler who has visited 30 countries (and counting!), she feels passionate about international development through sustainable mechanisms. Sarah has taken an interest in the intersection between public health and theater, and hopes to create a program that utilizes these disciplines for community empowerment. She is a fluent Spanish speaker with plans to take residence in Latin American after graduation.