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

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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.

Click here for more articles in our ongoing series about the TRC Calls to Action.

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)

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.

Read more: Indigenous knowledge is the solution to Canada's health inequities

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

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

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.

Food Insecurity Affects More than 41 Million Americans

In a nation of plenty, why do 1 out of 8 Americans have uncertain or limited access to food?

In America 1 out of 10 don’t have enough to eat, much more than the 1 in 20 in Europe (Source: Bread Institute for America).

In America 1 out of 10 don’t have enough to eat, much more than the 1 in 20 in Europe (Source: Bread Institute for America).

Going hungry in America is not what most would expect. Hunger might mean sacrificing nutritious food for inexpensive, unhealthy options. It might mean periodic disruption to normal eating patterns. And increasingly such hunger occurs among white families, in the suburbs, and among obese people. In other words, any community can be affected; and in 2017, the USDA reported 12.3% of American households are food insecure. Hunger today is a result of tradeoffs between food and other costs—such as health care, bills, and education.

However, hunger does not accurately depict food insecurity in America. Hunger is a prolonged, involuntary lack of food that can lead to personal or physical discomfort. Conversely, food insecure, coined in 2006 by the USDA, defines a household with limited or uncertain access to food. Food insecurity results from limited financial resources and makes it difficult to lead an active, healthy lifestyle. Further, food insecurity can be categorized either as low food insecurity (reduced quality of food, but not intake) or high food insecurity (both reduced quality and intake).

No matter the category given, food insecurity has serious effects. This is most evident in the need for 66% of Feeding America customer households to choose between medical care and food, according to a 2014 study. Considering many food insecure individuals have diabetes or high blood pressure, medical care can be critical. A study by the Bread for the World Institute in 2014 estimated hunger creates $160 billion in healthcare costs. This includes mental health problems, nutrition related issues, and hospitalizations among other potential costs.

Further, 13 million of food insecure individuals are children and 4.9 million are seniors: two critical groups whose bodies rely on proper nutrition. For example, the effects of hunger in children have been known to delay development, cause behavioral problems, and even increase the chances a child will repeat a grade.

One solution for food insecurity is federal food assistance programs. Indeed, 59% of food insecure households are part of at least one major federal food assistance program— but 25% of households do not qualify. The most well-known of these federal programs is SNAP, or Supplemental Nutrition Assistance Program. SNAP requires your gross income be at or below the poverty line by 130%, allowing for adjustments with family size. Still, the average amount per person is around $133.07 a month—or less than $1.50 per meal.

The desired solution though is the end of food insecurity in America. A major force behind this future is the domestic nonprofit, and hunger relief organization, Feeding America. Feeding America supports food banks, funds research, provides meal programs, mobilizes anti-hunger advocacy, and educates the public among other initiatives.

Overall, Feeding America and its partners served 1 out of 7 Americans in 2017. It was able to do so as it works together with 200 food banks and 60,000 pantries. Each affiliated food bank, a non-profit that stores food for smaller organizations, is evaluated according to industry practices and food safety laws. Additionally, all staff receive food safety training. These practices ensure all food is safe when distributed at the food pantries, which directly serve their communities.

Much of the food was higher quality too: around 1.3 billion pounds of nutritional food was delivered to food banks in 2017. Some food is food waste, in 2017 3.3 billion pounds were rescued from landfills and redistributed for consumption from partner companies, such as Starbucks. And all these small initiatives are directly helping communities, making food security an increasing possibility for the future.

 

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.

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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).

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).

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.

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