FormalPara Key Points

  • Community is a source of strength for American Indian families and individuals diagnosed with cancer.

  • American Indians do not view disease, disability, or death in the same way as those in Western society. A cultural strength is the acknowledgement and acceptance that life processes of birth and death are normal.

  • American Indian culture, worldview, and circumstances influence how cancer is perceived, addressed, and managed.

  • American Indian cancer survivors describe their experiences in managing cancer symptoms and the way cancer influenced their identity.

Cancer incidence rates among American Indians appear to be on the rise, while similar rates for US population are decreasing slightly [1]. In this chapter, we discuss how American Indian culture, worldview, and circumstances influence how cancer is perceived, addressed, and managed. We present the everyday experience of American Indians with cancer residing in a Southwestern state, in their own voices. These cancer survivors share how they managed cancer symptoms and the changing identity and roles that often accompany treatment.

American Indians and Alaska Natives (AI/ANs) have survived and thrived for thousands of years through their traditions, culture, ceremonies, stories, songs, communities, and family. Their cultures have survived despite genocide, loss of lands, forced migration, assimilation, prejudice, and deliberate efforts at cultural erasure, including boarding schools. Thus, while culture improves the lives of Indigenous peoples in every aspect, including cancer management, certain circumstances undermine their cultural strengths.

The 574 federally recognized Tribes in the USA [2] represent a vast diversity of cultures, histories, and traditions, but there are many similarities between them. Culture and community remain as important as ever and are key to adapting and living through adverse conditions—ranging from climate change to cancer diagnoses and treatment. Indigenous healthcare extends beyond physical health considerations as it encompasses emotional, mental, and spiritual healing.

American Indians may live on remote reservations and Tribal lands where healthcare services are provided by the Indian Health Service (IHS) and administered by the federal government. The IHS facilities range from small single-purpose clinics, such as prenatal clinics, to mid-size hospitals. Although there are some urban IHS facilities, those outside of Phoenix, Albuquerque, Gallup, and Anchorage tend to be small and not adequately resourced for cancer care. American Indians living far from their reservations typically rely on the same kinds of care and health insurance coverage available to non-AI/ANs.

Voices of Study Participants

Study participants were American Indians from the Southwestern United States residing in Arizona. The cancer survivors interviewed for this chapter were a part of a large randomized clinical trial on cancer-symptom management [3]. Many study participants were interviewed at a large Indian hospital in Arizona, where they told of their cancer journey from diagnosis to treatment and their physical and cognitive concerns.

Indigenous Outlook on Health

AI/ANs do not view disease, disability, or death in the same way as those in Western society. Nevertheless, medical provision, caregiving, and protocols are designed for non-Indigenous Americans. This is especially evident for a disease as serious as cancer. Western perceptions of wellness and illness are built around a fear of death and disability. Life insurance salesmen in the United States typically talk about “… if you die.”

American Indians are much more realistic in their outlook on life and the disease process. A cultural strength among these communities is the acknowledgment and acceptance that life processes of birth and death are normal. This means that bodily losses, disabilities, and aging are also accepted and viewed as an ordinary part of life. The opposite is true in Western society, where elders are not strongly valued and are often rendered invisible. Older Americans are essentially disregarded once their working life is over, and they are seen as being engaged in the uncomfortable processes of aging and dying. People with disabilities and/or those with physical marks are often kept from the eyes of general society in hospitals, in housing complexes, or in homes.

Conversely, AI/ANs hold great respect for their elders because they have the wisdom of their lifetime experiences. All Tribal members are accepted, and illness and death are respected as part of the process of living. Loss of physical function due to surgery is not hidden but is accepted as a part of the healing process. American Indians with cancer have an advantage over non-Indigenous cancer patients who experience the stigma of cancer and the attendant loss of function, body parts, or their lives. In the USA, cancer patients and survivors are seen as “fighting” cancer. They may experience guilt in contracting cancer in the first place (e.g., by smoking), or, if they die, their legacy can be tarnished for “losing their fight” or “not fighting hard enough.” American Indians view cancer as part of their journey through life, during which both foreseen and unforeseen events occur.

Healthcare and Cancer

Healthcare providers and educators are primarily coordinated through the IHS, a federal agency charged with raising the health status of AI/AN. Because of the remoteness of many Indigenous communities, many individuals with cancer undergo screening and treatment in cities far from the strengths and support of their communities. Screening, diagnosis, and treatment are not shared with their communities—and often not with their families—as cancer patients are guided away from home.

Western healthcare providers bring the patient into a clinic room for screening and diagnosis; thus, AI/ANs are forced into Western models of the nuclear family and environment. American Indian community strengths are not known or recognized by wider society. In fact, a national poll sponsored by the Native Truth Research Project found that 40% of Americans were unaware that American Indians still exist, and a majority admitted that they do not know any AI/ANs. The “invisibility and the dominant narratives that limit Native opportunities, access to justice, health and self-determination” [4] will counter community strengths in terms of culture, perception of illness and wellness, as well as the process of healing though ceremonies and social/family support and care.

Once diagnosed, cancer treatment and care are all too often managed within the Western model. For pain management, over-the-counter pain medicine may be replaced by strong pharmacolites. These drugs can dull the senses and may bring about periods of confusion and extended sleep. While American Indians perform interventions such as healing ceremonies, they do not reject the need for oncologists for those with cancer. Healing ceremonies bring together families and loved ones to provide support, help plan for the needs of the cancer patient/survivor, and stand beside the patient during their journey with cancer. Thus, while AI/ANs are aware of Western models of cancer care, the opposite is not true. Western medicine seems to lack knowledge regarding the strengths of Indigenous communities that provide a network of support and surveillance, as well as mental care through activities such as mediation and relaxation sessions.

Adverse Effects

Adverse effects associated with diagnostic and treatment procedures present myriad problems. These include issues of cancer-symptom management, loss of physical and cognitive abilities, and loss of personal identity.

Managing Cancer-Related Pain, Fatigue, and Loss

Cancer symptoms include pain, depression, fatigue, and loss of function. Of these, pain is a significant problem. Cancer-related pain is managed in several ways by the patient/survivor. Attempts to bear or ignore pain eventually give way to accepting the need for pain control. However, prescribed pain medication is often avoided for fear of addiction [3]. Massage and heating pads have been effectively employed to ease pain. In one study, several American Indian cancer patients drew pictures of their pain in an attempt to share an understanding of how they both “see” and “experience” cancer pain [5]. Furthermore, differing views, beliefs, and communication styles between the care provider and the patient [6] highlight the importance of culture in patient communications and provider perceptions of patient pain and other adverse symptoms [7, 8].

Loss of Physical Ability

Loss of limbs, sight, and organs can be traumatic, not only due to the resultant mobility limitations, but also to limitations in communication and bodily functions. Physical losses can also have significant impacts on the role of cancer survivors within their families and communities. The role of provider may need to be relinquished to another family member who is not a cancer survivor. The role of parent may be transferred to siblings or to grandparents, and the role of community leader, healer, teacher, or participant in song or dance ceremonies may need to be ceded to another. However, new roles may emerge, such as that of cancer educator for families and communities. Accordingly, cancer survivors can continue to serve as valued members of their communities, where the experiences and knowledge gathered during their cancer journey are valued.

Changing Identities

Tribal members share commonalities in terms of identity that are displayed in song, body markings, regalia, and even hairstyles. One Tribal member shared his experience of losing his long “Indian hair” following cancer treatment. Wearing a baseball hat, he met the research interviewer in a private room, insisting on privacy as he did not want to be seen by others. He removed his hat to show his bald head, stating “this is what they did to me.” During the initiation of chemotherapy, he was not advised of possible adverse effects such as nausea, fatigue, and hair loss. He told of a morning shower where handfuls of his hair were dropping from his head. He did not know what was happening nor what to do. He refused to be seen in public as his “Indian hair” was gone—his identity as an Indian male was destroyed. He had no idea if it would grow back, only that this was a worse horror than the cancer diagnosis itself. He was hiding, as his “Indian male” identity was lost.

Interaction with Medical Providers

The process of cancer diagnosis and treatment requires a good relationship with medical providers. Cancer survivors have reported a range of experiences, from positive interactions with doctors and nurses to confusion regarding diagnosis and treatment. One elderly Navajo woman in our study agreed to be interviewed while in the cancer infusion room. With a needle in her arm, she was asked if she knew what was being put in her arm. “I don’t know,” she replied, “they did not tell me.” She then asked the nearby nurse who said, “Oh, she has breast cancer—here, I will give her a brochure.” A practicing physician at the San Carlos Apache Reservation stated, “it was also common for the elderly to pretend they understood English, when they did not. It was important to bring an Indian nurse into the exam room at that point” [personal communication with E Holburt, 2023 September 13]. The relationship between the cancer patient/survivor is of utmost importance and must be one that allows for mutual exchange of information, dialogue, and respect. Assuming that a patient would not want to know about or be able to understand a diagnosis and treatment is unconscionable and patronizing. Healing begins with good communication, and each party needs to fully participate in the process.

Conclusions

Communities share words of wisdom and hope, just as they have for thousands of years. Cancer is not new, and it has been found in the ancient bones of American Indians. It is an illness that in the past the Apache called “Ka,” which describes an illness, “Cho’I,” which describes an evil, and “Do na tsdzihi,” which states that it does not heal. The Navajo do not have a specific word for cancer, but use the phrase “Lood doo na’ziihii,” which translates to the “sore (or wound) that does not heal.” These words have slowly fallen from use as more educational programs have been provided that bring knowledge of the need for screening, treatment, and healing. Community outlook on wellness and illness has expanded over the years to include new definitions, understanding, and responses to unfamiliar illnesses such as cancer, type 2 diabetes, and tuberculosis.

New roles and healing trajectories are being developed. Understanding of cancer diagnoses and treatments—along with their process and adverse effects—is being expanded. A cultural advantage of the Indigenous outlook on life and health is its holistic approach. While Western medicine focuses on physical health for diseases like cancer, AI/AN cultures view physical, mental, emotional, and spiritual health as necessary for healing. This outlook will have positive effects as communities work to heal their members. They work with clinic nurses, educators, and outreach workers to spread awareness of successful treatments, diets, lifestyle choices, and new therapeutic technologies. It is important to note that educational efforts must not only be focused on AI/AN individuals, their families, and their communities; they should also inform healthcare providers in the IHS as “providers literally had no orientation on American Indian culture in general or Apache culture in particular” (participant comment). Cultural orientation needs to be provided at other facilities as well so that their members can better understand the unique worldview and lives of AI/ANs. Finally, prevention should always be addressed in dialogue with communities and their providers. Early diagnosis means better hope.