Improving preventive screening with Indigenous peoples

First Peoples, but second-class health care?

Across Canada, Indigenous peoples have poorer health² than non-Indigenous populations, as shown by data on chronic health conditions, avoidable mortality, suicide, substance abuse, and smoking rates^3,4; this leads to Indigenous peoples having a shorter life expectancy at birth —by 5 to 11 years—than the rest of the Canadian population.^5,6 Indigenous peoples suffer from persistent inequity of access to care and heavier burden of preventable disease. In a recent publication documenting the association between Indigenous identity and poor postoperative survival,⁶ the authors raised questions about differences in disease stage at initial presentation and referral patterns.

When it comes to cancer, both Indigenous men and women have poor survival rates.^7-9 Family physicians need to be aware that cancer diagnoses are often delayed, resulting in a heavier burden of morbidity and mortality in Indigenous populations. Scarce and conflicting data exist on the participation of Indigenous peoples in screening programs^10-13; some have speculated that various reasons, such as accessibility or acceptability of screening programs, may lead to lower participation among Indigenous peoples.^14-17

In tightly knit communities, this burden is often more socially meaningful as it will affect a friend or relative. Their stories and experiences of care are a reality shared with other members of the community.¹⁸ For cancer, the relative prevalence of advanced disease may make it appear incurable, reinforcing cancer stigmatization and fears. Too often, a cancer diagnosis is perceived as a death sentence, leading many patients to not want to look for it. This results in patients avoiding cancer screening or not wanting to seek medical attention when there are symptoms suggestive of cancer.^12,15,19

Screening programs and recommendations are poorly adapted to Indigenous realities

Guideline-based screening (particularly cancer guidelines) is poorly adapted to the reality and preferences of Indigenous peoples. Figure 1,^{10,12,13,17,20-22} which is inspired by the conceptual framework of access to health care developed by Levesque et al,²⁰ depicts a cycle of documented pitfalls and barriers to accessing health care experienced by Indigenous people. The difficulties experienced by Indigenous patients often include the lack of appropriate and culturally tailored educational materials or advertising, inappropriate sample collection methods, physical barriers to accessing health care and screening infrastructures, limited local availability of primary care providers, and difficulties gaining entry into the system rapidly when diagnosed.²⁰ Also, there is difficulty accessing appropriate counseling, different challenges in ensuring adequate follow-up for an abnormal result, and confidentiality issues.^{10,12,13,17,20,21} The burden of colonialism and its impact, particularly for cervical cancer screening, also deserves specific consideration.^9,17,22,23 These factors contribute to the preventive health care experience of Indigenous peoples and communities.

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Figure 1.

Circle of pitfalls and barriers to accessing preventive health care and screening

Often, regulations and restrictions on the scope of practice of allied health care professionals in remote communities limit their role in preventive health care and screening. For example, they are trained to perform the initial sampling, but cannot ensure proper follow-up without protocols to manage the results. Hence, follow-up of screening results most often needs physician participation. Screening for cervical cancer and sexually transmitted infections are examples of these professional jurisdictional constraints.

Continuity of care remains a major concern for follow-up of sensitive results. Many patients living remotely must leave significant others to undergo additional or complementary tests by seeking care outside their community—likely alone and often in a strange urban setting where they have had no previous experience and no one to accompany them and guide them through the system and their experience of care. How can we ensure the processes assist patients and support them adequately?

Preventive care recommendations are not neutral

“Evidence-based” recommendations are not neutral. They reflect the reality of modern-day colonialism in health care where “science” is often used to legitimize the superiority of one epistemology over another.²⁴ Recommendations presented by health care professionals as the “standard of care” may invalidate traditional wisdom of self-care. The message is even harder when the burden of colonialism is placed on the shoulders of Indigenous communities who face persistent inequity in the social determinants of health.

Physicians must never forget that medicine also operates as a system of power.²⁵ For example, an Indigenous woman shared her story with us of being instructed not to eat traditional food (moose meat, in particular) when she was hospitalized for weeks because of complications during her pregnancy. Her iron levels, perfect when she arrived at the hospital, declined enough to require supplementation because of her hospital diet. This is an anecdote, but for Indigenous peoples, anecdotes become bricks, building a wall separating them from the rest of the population. In addition, the messenger is as important as the message, because recommendations do not function in a cultural vacuum. Bernard Roy, an anthropologist nurse who worked with the Innu people for more than 20 years, recalls that one woman trying to improve her health by eating lettuce had to deal with resentful comments from her own mother, who remarked that she never thought she would see her daughter eating like a White person.²⁶

Colonialism is embedded in the practice of medicine

Physicians are trained to identify, assess, and address risk factors. We constantly attempt to make decisions by evaluating the risk and prognosis for patients. Yet, when it comes to Indigenous health, what might be a simple “probabilistic approach” of medicine or preventive care may convey powerful and long-standing stereotypes. These stereotypes are informed and reinforced by decades of media coverage, policy, and research conducted without the involvement, perspectives, and consent of Indigenous communities.^27-29 Science was embedded insidiously in our society and has contributed to shaping epidemiologic risk profiles. In addition, the probabilistic approach may unconsciously aggregate “being Indigenous” with “being at high risk” (ie, at high risk of substance abuse disorders, bad parenting, lascivious or deviant sexual behaviour, and more generally, bad health or bad habits).^25,30,31 As such, indigeneity itself may be considered an independent variable of clinical significance when it comes to baseline risk of disease, preventing health care professionals from recognizing and addressing the contextual factors that are the real cause. Unconsciously, this can mislead our clinical judgment and behaviour and harm patients in ways that extend well beyond the clinical encounter.^25,32 This is what McGibbon calls the “cycle of oppression” (Figure 2).^33-35 Starting from biased information and leading to stereotype, health care professionals enter the clinical encounter with prejudice that may impact their actions and produce differential treatment.

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Figure 2.

Cycle of oppression

Many, if not most, Indigenous people in Canada experience racism on a recurring basis.² As such, they often come into a health care setting with the expectation of poor treatment.^32,36 Indigenous people’s responses may lead to feelings of exclusion, defensive attitudes, and avoidance of care.^32,37 This avoidance activates delays in consultation, missed appointments, and missed interventions, leading to more severe disease at time of diagnosis, which paradoxically reinforces stereotypes when patients and health care providers finally meet. This dynamic extends well beyond the walls of hospitals. The patient’s experience resonates in their family and their whole community. What happens to any one of them, happens to the whole community, while what happens to the community is also a part of each patient’s storyline.

Strategies to improve culturally safe screening

Acknowledging the limitations of the body of literature on cancer screening and other preventive care among Indigenous populations, very little attention seems to have been given to the importance of shared decision making as an empowerment tool. Screening per se should not be an end, but rather an occasion for a conversation between health care professionals and their patients, allowing them to discuss their values and preferences for their health. Thus, focusing on building a therapeutic relationship with an Indigenous person is critical—rather than aiming to check all recommended screening tests upon first encounter in an environment that is often seen as unwelcoming.^32,38,39 In many cases, Indigenous patients may wish to discuss screening (or other medical decisions, for that matter) with their close family members or respected Elders in the community before agreeing with the suggested plan. Critically, certain specific aspects may be taboo, such as those dealing with sexual matters. Cervical cancer screening is a particularly sensitive matter, as it targets the power and intimacy of Indigenous women. All considerations being made show the gendered impact of colonial racism.⁴⁰

Trust and time—2 prerequisites for conversation— are often lacking. It is important to not just have more Indigenous patients screened for cancer, but to involve them in the conversation to decide whether and when they wish to undergo screening.

Cultural safety can be achieved only through meaningful participation in decision making, which involves promoting active participation in health care decisions and demonstrating true commitment and care for patients and their families.³¹

Returning to the case scenario, the encounter was “medically” appropriate. Still, something went wrong, or was missing. Could things have been done differently? The following are some strategies for culturally safe practices in preventive care:

Facilitating screening

Supporting shared decision making for screening remains only part of the solution, yet is key to creating a culturally safe environment of care. After the decision to screen has been made, barriers to access need specific solutions. The literature supports initiatives improving on-reserve screening services, mobile screening services, advanced training for service providers, and group transportation to fixed sites. Data on effectiveness are not yet available, but other initiatives such as social marketing campaigns, organized screening days, and media education are also promising options to explore within Indigenous communities.^{5,9,16,22,49,50}