Cancer: Taking the Time to Converse
By Mary Ndu, MPH, Ph.D.(c)
Department of Health and Rehabilitation Sciences, Faculty of Health Sciences
A few weeks ago, I heard the story of Ahmed (not real name), who was misdiagnosed for several years, only to learn that what has ailed him for over two years was cancer. He was at stage 4 of kidney cancer and would die three months after finally receiving the accurate diagnosis. Neither he nor his spouse had time to prepare the children or themselves for his demise. Shah et al. (2019) note that while LMICs have a low cancer incidence, they account for a high percentage of global cancer deaths. Nigeria, for instance, accounts for the highest cancer burden in Africa (WHO, 2020). Today is the international awareness day to inspire action for a cancer-free generation. On this day, I find it appropriate to reflect on Ahmed's story.
Ahmed’s story is one of many I have heard of health care workers in Nigeria misdiagnosing people. Many of such stories relate to terminal illnesses like cancer. One could ask, are Nigerian doctors intentionally misdiagnosing or cannot diagnose properly? Or do doctors feel it better to hide patient diagnoses to protect them and their loved ones when the investigation reveals a potential terminal illness? Personally, I am leaning towards the latter since I do not want to believe that an ailment as severe as cancer can go undetected for years. Why would I say this? I have my reasons.
One, I am aware that as passionately religious people, we believe any form of ill health is a sign of sin, punishment, or spiritual attack from ill-meaning neighbours, and admitting it means giving power to your enemies.
Two, there seems to be a culture of silence or shame surrounding cancer that may likely be due to misconceptions of the root causes of cancer. It is, therefore, not surprising to find cancer deaths presented as brief illness or long illnesses kept private until the very end. In many instances, patients may hide their status and resort to trado-spiritual healers for a cure. I say this because I recognize the high out-of-pocket cost of healthcare which can be daunting for many families. In some instances, when the doctor informs patients, they are unwilling to share with their families even when finance is not an issue. A friend Adeniyi (not real name) whose father-in-law was diagnosed with cancer six years ago, explains that even though there are systemic issues, there are more socio-cultural factors influencing the culture of silence. He explains, “Although there are many practicing oncologists and urologists in Nigeria, getting an appointment is difficult. When we got an appointment, the patient queues were long and the medical team did not clearly communicate his diagnosis and management plan to him. For two years, all his efforts were focused on spiritual and herbal cures. Thankfully he is now in remission but if he were to give his reviews, I think he will be critical of the level of access to services and the effort put into patient engagement and education; rather than the clinical skills and competence of the cancer care teams manage him.”
Three, one could say that doctors trained within such a society with such an interplay between culture and religion would struggle with telling patients they are terminally ill. A few Nigerian doctors I spoke to confirm a culture of silence on terminal illness as they do not want to be the bearers of bad news. One doctor said, “I have had previous instances in my medical career where I couldn’t get myself to tell a patient that there was no medical solution to the current health challenge faced by the patient. My inability to reveal to the patient my diagnosis did not come from the lack of medical responsibility, but it resulted from my fear of making the patient lose hope. In the Nigerian context, hope is a vital element needed for life sustenance. I decided to refer the patient to a specialist, who I was sure should give the final diagnosis.”
Cancer is not a disease of the poor, even though it increases the inequity gap between the poor and the rich. Like Ahmed, who would go down as a statistic, revelations after the death of many elites show the extent to which cancer has eaten into the fabrics of Nigerian society. Some famous cases come to mind, like Nigeria’s former president, Umaru Musa Yar’dua, who died from lung cancer after years of denying it and, more recently, Sound Sultan, a Nigerian artist. We have lost many other prominent Nigerians to cancer, and these are people who could seek quality medical care in advanced care systems. Imagine Ahmed and many others like him who lack access to such quality care, living within a poorly managed system without social safety nets coupled with social norms and practices that stigmatize and explainable phenomena like cancer.
We need to normalize discussions around cancer as a path to addressing social norms that stigmatize patients. I find that representation matters when we talk about ending social practices that isolate or stigmatize a particular group. All it would take to begin these conversations is a celebrity or an elite willing to share their pains and be vulnerable enough to initiate a new narrative. We must have honest conversations about health, re-orienting our attitude towards health, and make routine check-ups a habit. Unfortunately, every mortality due to cancer is a missed opportunity to engage and discuss, create awareness and increase government action for preventive, treatment, and palliative care. My conviction comes from the role Angelina Jolie played in calling attention to breast/ovarian cancer among American women. Her singular action normalized the image of a cancer patient representation in media, increased discussions about cancer, and made it difficult for the media to misrepresent or ignore the issue. As a 2013 NPR report states, “Her story got many people talking about preventive mastectomies. But it didn’t do much to increase people’s understanding of breast cancer risk.” The emphasis here is on people talking, which we need to do more. People need to know it is okay to go for annual check-ups, that talking about your illness is not a sign of weakness, and that being ill is not a cause or punishment for past sins. We may continue to see an increase in cancer incidences, given our changing lifestyle and poor health habits. There is no better time than now to begin to have these difficult conversations.
While I recognize how social norms drive cancer care, health system barriers still need to be addressed. Haier et al. (2019. p. 477) note, “Cancer care represents a major hurdle for UHC in LMICs, mainly due to lack of screening and early detection, poor education with regard to cancer, the cultural taboo of cancer, and the requirement for costly infrastructure for diagnosis and treatment, including educated personnel.” Studies report that a critical challenge to cancer care in LMICs is the accessibility and availability of quality care. I would agree and disagree with that statement and dare say that the issue is not one of awareness or health worker capacity but one of mindset. On the other hand, I agree that access and available quality care are lacking given the distance of health facilities to people. One way to address these issues is for the Nigerian government to make cancer screening a routine service in primary health care and create a social safety net that provides routine screening as a preventive measure. Two, the government, in partnership with the private sector, should establish palliative care centers to manage end-of-life pain for chronic diseases. Currently, the country is developing an integrated non-communicable disease (NCD) plan that includes cancer. However, it is crucial to develop a specific management guideline for cancer that considers social norms, values, and practices in Nigeria’s cancer management.
References:
Haier, J., Sleeman, J., & Schäfers, J. (2019). Editorial series: cancer care in low- and middle-income countries. Clinical & Experimental Metastasis, 36(6), 477–480. https://doi.org/10.1007/s10585-019-10003-4
Shah, S. C., Kayamba, V., Peek, R. M., & Heimburger, D. (2019). Cancer Control in Low- and Middle-Income Countries: Is It Time to Consider Screening? Journal of Global Oncology, 5, 1–8. https://doi.org/10.1200/jgo.18.00200
