The spaces became familiar to me, cubbies with a recliner, poles hung with bags of fluid, the steady beeps of the equipment monitoring the patients. But while the experience left many impressions on me, there is one phrase that haunts me still: I’m on my way out.
Said instead of “I’m dying,” a more direct sentiment, it’s worth considering why “I’m on my way out” was such a prevalent way to express the act of dying. Most patients never said anything about their health in the life stories they shared with me. Many focused on the lives they had been living prior to cancer, and typical themes in these stories included family and friends, food (often, memories of food, since chemotherapy had changed the way many patients experienced taste), faith, and work. I collected over seventy stories, and not even a handful of them mentioned dying, or the phrase “I’m on my way out.” Yet, it could be heard in the talk before and after the storytelling sessions, or upon receiving a written version of their story, later, per the study’s protocol.
I’m on my way out—it’s a gentler phrase than “I’m dying,” but both expressions talk about the process of “no longer being.” The phrase puts one in mind of leaving a room, of disappearing from view from the rest of us, presumably, the ongoing, the living. It also hints at something more impermanent, because in other contexts “I’m on my way out,” is often followed by “See you later.” Or it is implied. The process of dying, in the case of the patients I worked with, was gradual, and many hoped that the curative treatments would, in fact, work to extend their lives. In some cases, patients hit their five-year survival benchmark, which did extend their lives, even as that designation was not the same as “cured.” Chemotherapy itself is a brutal treatment, and so patient quality of life was often low. It would be easy to feel fatalistic about one’s cancer diagnosis while enduring such difficult treatment. The patients who used the phrase, “I’m on way out,” tended to already be in palliative care, and therefore receiving palliative chemotherapy. Still, these patients rarely used the word “dying.”
However, it can’t be ignored that these patients were also living in (or near) West Virginia, the heart of Appalachia, and it’s fair to speculate that geography and culture may also have colored the choice of words: “I’m on my way out.” Most of the patients I worked with had advanced stage cancers, which is not uncommon in West Virginia for a myriad of reasons. One of the key factors is the lack of healthcare available to many Appalachians, leading to later screenings and tests for cancer. However, there is evidence that Appalachian culture may also be contributing to the problem: “A focus group study of rural Appalachian primary care providers found that patient attitudes and behaviors described as fatalistic were barriers to recommending and/or performing cancer screening. In the study, primary care providers indicated that patients would frequently explain that they had not followed recommendations to obtain screening because of beliefs that cancer is inevitably fatal or because of fatalistic religious beliefs” (Royce and Dingman, 126).
Many scholars and researchers have studied the phenomenon of Appalachian fatalism, the cultural belief in Appalachia that present circumstances and future events are beyond one’s control. In an older-yet-useful article about Appalachian fatalism, Wendy Welch, an educator and advocate for social justice in health care within the Appalachian region, wrote, “It should not be surprising, therefore, that the concept of fatalism entwines itself like kudzu within the efforts to bring urban medicine to a rural area. Also called learned helplessness, mountain stubbornness, hardiness, and sometimes loss of control, fatalism has an odd history in the region” (108). According to Welch, the concept dates to 1870 in epidemiological literature of the Appalachian region; however, recent work by Royce and Dingman suggests that this phenomenon is still pervasive:
“… a study of 6,369 adult Americans concluded that fatalistic beliefs about cancer prevention are not only widespread but also a cause for concern because of being associated with lower odds of engaging in prevention activities such as regular exercise, not smoking, and fruit and vegetable consumption. There is little objective information describing variability in fatalism on a population level or among subgroups. However, several investigators have characterized the population of Appalachia as being generally more fatalistic than mainstream America” (126).
There may be reasons to further unpack the idea of Appalachian fatalism, to consider it within the larger context of rural healthcare that both includes and extends beyond the region.
Many scholars have noted how harmful stereotyping has and continues to hurt Appalachia: “Appalachian populations have endured stereotyping as ‘backward’ and poverty-stricken, taking up a role in popular imaginaries as the ‘other America’ since the mid-19th century” (Perfetti, 60). Therefore, it is worth considering whether the “othering” of the culture might, in fact, create a bias in how providers, especially providers from outside of Appalachia, interpret the speech and behavior of their patients. Because of a lack of permanent medical providers, Appalachian health care has often relied on foreign doctors who take positions in the region to secure their visa status to practice in the U.S. Many of these physicians and health providers will move to other areas after establishing themselves, creating a revolving door of clinicians in the Appalachian region. When we contrast this itinerant population of providers to those they serve, a culture that tends to value staying in a community, generation after generation, we can begin to understand the disconnect that affects healthcare and health outcomes in the region. Furthermore, the issues around access to care, may not be inherently Appalachian, but a feature of rural healthcare throughout the U.S .and beyond: “Addressing rural cancer disparities has become a key priority area for the National Cancer Institute in the United States (US), which has led to an increase in the amount of research funding being directed towards this field. However, the impact of rurality on psychosocial morbidity remains less clear than the impact that it has on physical morbidity and survival” (van der Kruk et al, 1022).
As we consider a phrase such as “I’m on my way out,” it’s worth noting that this desire to distance oneself from the words “death” and “dying” is likely not limited to Appalachian patients either. In fact, the message these patients are trying to convey may be less fatalistic than how we interpret it. In Appalachia specifically, “…ethnographic accounts show that, in this [health care] context, expressions of fatalistic beliefs did not necessarily indicate powerlessness or hopelessness, rather were a culturally acceptable way of talking about challenge and constraint” (Perfetti, 60). After completing a two-year study in one of the region’s major cancer centers—a study that has not been replicated in West Virginia, and one I have not conducted elsewhere—it may be that I’m reading into a fatalism context that doesn’t truly exist. While I identify as part of the Appalachian diaspora as someone with family ties to the region and who has lived in worked in the region for over twenty years, I wonder if my understanding of “I’m on my way out” is colored by the experiences I’ve had culturally and educationally outside of Appalachia: “Most studies that have drawn on fatalism as a possible explanation for health behaviors have involved populations that tend to be viewed as problematic or ignorant. Those with an external locus of control are said to believe that health is governed by external, uncontrollable factors and, thus, are perceived as irrational and ignorant and requiring health education” (Drew and Schoenberg, 165). These beliefs may be transferable, even to those of us who identify strongly with the Appalachian region.
It may only be one euphemistic turn of phrase, but misperceptions like this can lead to mistrust and distrust, and taken to extremes, can diminish a patient’s willingness to engage with providers, thereby hampering their ability to catch disease early, when clinical outcomes might be more positive: “Depending on personal experiences with the medical system, participants reported that some southern West Virginians distrust physicians or question the quality of the care they receive. Some participants report that seeking help from a medical institution or provider is regarded as a last resort among people in the region” (McDaniel quoted in Welch, 111). Welch elaborates on a story where a woman received care from a medical student, a consequence of health provider shortages in an area that had become reliant on mobile clinics. In an interaction, the medical student lectured the patient on food and lifestyle choices, which the woman felt were beyond her ability to control, and, understandably, she left disgruntled. Welch explains:
In this situation, violation of trust erupted from broken etiquette rules. The patient expected the student to know about and sympathize with her food risk; the student respected neither personal sovereignty nor family matriarch status [both important within Appalachian culture]. This fifty-something Appalachian woman did not expect—or accept—lectures from twenty-somethings, even (or especially) when receiving free services. The woman refused to return, declaring that fate would take its course” (111).
One might argue that one of the best-known ethical tenets of the profession, “First, do no harm,” was violated in this instance. We can speculate on the medical student’s intentions and his desire to provide good care, and we might wonder about the cultural training the medical student did or didn’t receive, which would be of particular interest and importance to those of us engaged in health humanities teaching and research: “Appalachian mountainous populations prioritize mutual respect and human connection; failure to connect can be interpreted as failure to care” (Welch, 112). This can lead to “fate” becoming a go-to response for these patients.
As is often the case, we may be able to apply our knowledge of patients in Appalachia to other patient groups, and especially as it pertains to cancer care: “Addressing rural cancer disparities has become a key priority area for the National Cancer Institute in the United States (US), which has led to an increase in the amount of research funding being directed towards this field. However, the impact of rurality on psychosocial morbidity remains less clear than the impact that it has on physical morbidity and survival” (van der Kruk et al, 1022). In this funding, there needs to be appropriate percentages allocated to understanding the culture of rural patients and how that culture intersects with disparities in their treatments and outcomes.
However, reading studies about these disparities, while valuable, is still far removed from engaging with patient stories, first hand. As I’ve reflected on my own experience in the chemotherapy infusion center—a practice that should be a part of medical education and also be part of a clinician’s work, with the time and space to do so—I’ve paused often to consider what those patients who said, “I’m on my way out,” were truly trying to communicate with me. Did they want me, and others, to acknowledge their existence before they ceased to exist? Were they making a claim to the life they had left? Was it an expression that showed their acceptance of their fates? Were they being wry in the face of their own mortality? Perhaps it was some complicated combination of all these impulses. Our ability to parse language is vital in understanding and treating patients. Every patient who said this phrase to me has died, and this one sentence still haunts me. I’ve come to realize a large part of that is because I was never able to fully receive this simple-yet-urgent message, spoken by so many different voices, before they eventually went silent.
Works Cited
Drew, Elaine M., and Nancy E. Schoenberg. “Deconstructing Fatalism: Ethnographic Perspectives on Women’s Decision Making about Cancer Prevention and Treatment.” Medical Anthropology Quarterly, vol. 25, no. 2, June 2011, pp. 164–182. EBSCOhost, https://doi.org/10.1111/j.1548-1387.2010.01136.x.
Perfetti, Angela Ross. “Fate and the Clinic: A Multidisciplinary Consideration of Fatalism in Health Behaviour.” Medical Humanities, vol. 44, no. 1, Mar. 2018, pp. 59–62. EBSCOhost, https://doi.org/10.1136/medhum-2017-011319.
Royse, David, and Mark Dignan. “Fatalism and Cancer Screening in Appalachian Kentucky.” Family and Community Health, vol. 34, no. 2, Apr. 2011, pp. 126–33. EBSCOhost, research.ebsco.com/linkprocessor/plink?id=f1c76764-768c-30ed-b9f2-8343a2fb9e4b.
van der Kruk, Shannen R., et al. “Psychosocial Well-Being and Supportive Care Needs of Cancer Patients and Survivors Living in Rural or Regional Areas: A Systematic Review from 2010 to 2021.” Supportive Care in Cancer, vol. 30, no. 2, Feb. 2022, pp. 1021–64. EBSCOhost, https://doi.org/10.1007/s00520-021-06440-1.
Welch, Wendy. “Self Control, Fatalism, and Health in Appalachia.” Journal of Appalachian Studies, vol. 17, no. 1/2, Apr. 2011, pp. 108–22. EBSCOhost, https://doi.org/10.2307/41446937.
