I had just begun my year of social service when I met a patient I will never forget. Let’s call her María. She was around 50 years old and was attending a follow-up for abdominal pain and abnormal uterine bleeding. The results of her colposcopy strongly suggested cervical cancer and an ultrasound showed multiple hepatic lesions: metastases. She did not know how to read and asked me to interpret the test results for her. Heartbroken, I took the time to explain the situation and treatment options, and asked her to produce the necessary documents for referral to a specialist in a larger hospital.
Working in a difficult-to-access region is a challenge. México has a ‘universal’ healthcare system where any person is eligible for treatment in a public hospital, either completely free or for a fee based on their socioeconomic status. However, access to this care is often limited by physical distance and an uneven and deficient standard of care. The nearest hospital with an available oncology specialist is three hours away from the community I work in, and commonly patients have to travel further, to another state, to receive chemotherapy or radiotherapy. This means a journey of more than 700 km for the opportunity of getting treated.
Luckily, Compañeros en Salud, the organization I work with, has a program that covers travel expenses and allows heathcare users to close some of these gaps. I told María what our main plan would be, and I mentioned that there were other alternatives, such as going directly into palliative care, that should also be considered. Here came complication number two. In spite of my best efforts, she did not seem to understand me. She repeated the same questions again and again, and seemed more confused than worried. I read through her file and found that this information had already been provided to her, but she continued asking what her diagnosis was and what should be done about it.
History repeated itself in subsequent follow-ups. I asked her to bring a family member to explain the situation. Her sister had a reaction more akin to what I expected: shock, worry, feeling a need to do something. And yet, my proposals seemed to make María’s sister worry further. Traveling for treatment would be a great challenge, not only for Maria but also for her family. Keep in mind that this tortuous process did not guarantee that she would be cured, and not even that she would get adequate treatment, as resources in even our biggest public hospitals are scarce.
Patients’ goals often differ from ours as their healthcare providers. Recognizing this and finding a middle ground is a guiding principle in palliative care. People who are vulnerable and are living through a difficult moment tend to develop unrealistic expectations about treatment outcomes; however, I’ve come to realise that their physicians do so as well. In reality, the odds of surviving metastatic cervical cancer, even for a few years, are minuscule even with timely care and unlimited resources, yet I spotted a tumour and my mind raced to chemo, radiation, and surgery. As her physician – possibly the only physician she could realistically have access to – I had to offer solutions, but what could I possibly do for a person with cancer if I was not an oncologist and had little formal training in palliative care?
With time, two things became evident. The first was that María would not be able to get specialised care: neither oncological nor palliative. She was not able to provide the documents we needed to request the referral, she simply did not have enough of a support network to travel that far and accompany her through such a complicated process, and Mexican healthcare prefers to turn a blind eye to such complex cases knowing people in such vulnerable conditions are unlikely to sue, complain, or even know their rights. The second thing I realised was that she would not grieve the way I was taught in medical school. She seemed more interested in what seemed to me to be minor annoyances – the occasional headache, cramps, menstrual spotting – than in the ominous diagnosis of terminal cancer that was my main concern. I started to realise that I was letting my worries guide our consultations: I was trying to steer the conversation towards her death while she kept bringing it back to her life. I had to take a step back to see what I was doing. There I was, in a position of great power, using big scary words to describe a condition that was almost certainly a prolonged death sentence to a woman made frail by disease, but also by poverty and a lack of access to education and healthcare, frustrated by the fact that I was more scared than she was. Something clicked, and I asked her what she needed. She told me she felt tired. She thought she needed vitamins. The pain she felt was minor, but the bleeding made her uncomfortable.
It was then that I did something that went against seven years of medical education. I did exactly what the patient asked and put my diagnosis aside. I stopped bringing up her death and started focusing on her life. Immediately, she felt at ease, and I could see that she was grateful that I was no longer repeating the same bad news she had already been given. I would see her again a couple of times, always cheerful and in a good mood. She was thankful because the vitamins had given her so much energy and the NSAIDs took care of the rest. She seemed a little thinner every time, and when she stopped arriving I assumed she had either died quietly or found another doctor. I’ll never know. She left no means to contact her.
I suspected she had cognitive decline, perhaps due to brain metastases or some other cause. Maybe she was just in denial. We never found out and, to be frank, it wouldn’t have made much of a difference because the most significant change, to the direct benefit of María’s quality of life and emotional state, happened when I shifted my priorities, dropped my own notions of what should be done, and paid attention to what she told me was important to her. No textbook, online library, or scientific article would have directed me towards this answer because none of those sources knew her. Even if she did see a specialist, they might not have focused on what was important to her. A single consultation among hundreds leaves physicians little space for reflecting on our own priorities and biases. As difficult as it is to learn to make an accurate diagnosis and establish adequate treatment, with time it becomes even more difficult to see beyond the illness. Make no mistake, María needed a team, she needed resources and support that the system absolutely failed to give her, but she also benefited greatly from a simple shift in perspective.
In his History of the Clinic, philosopher Michel Foucault proposed that, at the advent of modern medicine, when anatomic pathology was integrated into clinical practice, knowledge began to be extracted from inert bodies – cadavers – rather than from the living, which led to the creation of so-called ‘hospital medicine’ and ‘academic medicine’ as separate disciplines. To this day, hundreds of years later, one may still feel the consequences of this schism. In my medical education, I was given great knowledge about human beings with little regard to the actual experience of being human. Our social issues – the problems that we live through every day – were treated as taboo or relegated to footnotes, while academic structures continually reinforced the idea of humanity as the union of a series of body parts and systems: that is, of people as patients, a word which comes from de Latin patiens, ‘to suffer’ or ‘to bear’ passively. We still attempt to extract our fundamental knowledge from the inert. That is why I first insisted on leading María to her death and tried to turn her into a body, while she kept reminding me that she was alive.
Think back to high school. When we study physics, we start by learning abstract concepts through imaginary, simplistic problems, yet nobody calls themselves a physicist just because they know the first law of motion. One studies the basics and builds knowledge from there, aware that reality is always more complex than theory, but even after graduating medical school and calling myself a ‘doctor’, I found that I still lacked a lens to view this highly complex picture of the human experience.
In my education, Samuel Hahnemann’s truism that there are ‘no diseases, but sick people’ was constantly mentioned, but there was little talk of the social implications of getting sick,. Social factors were always lurking around the corner. We were taught that tuberculosis is more common in impoverished regions and that divorced men get depressed more often, but these were always treated as loose factoids: something to remember for the test. It seemed that only some conditions were eligible to be called ‘social diseases’. The usual suspects were ‘diseases of poverty’, like malnutrition and tuberculosis, and mental illnesses, like alcoholism or depression. Even in these cases, we always treated the social environment as another risk factor: something to be modified or “corrected” in some way to prevent disease. Beyond epidemiology, social context was forgotten and we were taught that there was a unified treatment, diagnosis, and prognosis.
Imagine my surprise when I started reading studies reporting that a lower socioeconomic level is related to a greater incidence of multiple non-communicable diseases, that inequality has a direct impact on all-cause mortality,, and that the children of impoverished parents have worse health outcomes and greater morbidity than the children of well-to-do families. México is a profoundly unequal country. There are impoverished populations both in rich cities and in remote rural areas. It is a palpable reality everywhere, yet all persons admitted into a given hospital are assumed to be on equal footing. Poverty is not a treatable disease, and thus it is mentioned only in the context of diseases and conditions that are treatable and almost never as a condition in itself. When it is mentioned, it is almost always used in a derogatory way: as a label. Everyone knows it is harder for an impoverished individual to get the care they need and deserve, but most fail to understand that this means impoverished and otherwise vulnerable populations should be receiving a greater amount of attention and support, regardless of their diagnoses. Mistreatment is not a direct consequence of vulnerability, but of our own ignorance when it comes to how vulnerability arises and how vulnerable people can be supported.
I began by telling María’s story to invite readers to run a thought experiment. ‘What would I have done?’ Would you have referred María to somebody else? Started palliative care right away? Involved a social worker? Asked her to come with a different relative? Would you have continued to insist that she has cancer and should be worried? It seems to me that each of these answers is valid, and it all depends on what context we are working in, but there’s the problem. We often pretend that there are diseases that are more social and diseases that are more medical, as if social context was only important in the former. However, evidence and experience point towards the opposite. In reality, the likelihood of each outcome changes if María is indigenous or white, rich or poor, literate or illiterate, and so forth. We simply cannot and should not treat two different people the same way, even when their diagnoses are nominally the same, because none of us is equal to another. Every human being holds the same intrinsic value, but different people have different needs, experience different hardships, and require different amounts and types of support. This compels us to think that it might be irrational to speak of a single disease when it can occur in many different contexts.
Moreover, the I in ‘What would I have done?’ is always the physician I, the provider I, the expert I. When we, as providers, decide which treatments to offer and which alternatives to favour, we are inevitably imposing our will as individuals upon others and affecting not only them but also the social group within which they exist. Our expertise often prevents us from seeing what is obvious to others, especially when we are quick to use a person’s conditions as labels, thereby making judgments that may be correct but often incomplete and reductive. This is why perspective is as necessary as idle knowledge. In María’s case, I do not claim that my approach was novel. Anyone in palliative care can tell you that listening to the user’s worries and treating even minor symptoms is important. What I want to highlight is how a shift in perspective, the contemplation of power dynamics and personal biases, can completely transform both your goals and the means by which you achieve them, allowing you as a provider of care to empower those who need it most.
Recently, there have been reports of complex socioeconomic and community-driven interventions having a positive effect in the fight against tuberculosis: a ‘social treatment’ for a ‘social disease’. However, there is also evidence that community-based and socially focused intervention programs have a positive and economically feasible impact in the detection and treatment of Type 2 Diabetes., When we cease to see social environment as a list of risk factors to be identified and start thinking of it as a series of highly complex, multifactorial interactions that determine a person’s diagnosis, treatment, and prognosis, possibilities open for new approaches and interventions that are creative, distinct, and user-centric. This is the essence of the concept of social determination of health proposed in the 1970s by the school of Latin American critical epidemiology. This was a movement that rejected a deterministic model of care focused on the actions and conditions of individuals, and embraced a historically critical approach in an attempt to give marginalised populations a voice. The epidemiological subject, this school of thought argues, can never be separated from their social reality, history, and experience. Thus, all interventions in healthcare necessarily have to address these issues.
This is a way of thinking that goes against the epidemiological theory most of us learn in medical school. Is having black skin a risk factor for renal disease? Does being Latin American come with a greater risk of diabetes? Perhaps, but a more reasonable and complete explanation would include the fact that racialized, impoverished, and otherwise marginalised peoples suffer from systematic discrimination, with poorer access to and greater mistreatment in healthcare services, greater food insecurity, and chronic underrepresentation in fields of scientific research., There is even the weathering hypothesis, which suggests that under-represented minorities undergo premature ageing as a response to continuous social adversity.
In the third year of the ongoing COVID-19 pandemic, multiple social issues have become glaringly visible. These problems have existed for a very long time, but they are now impossible to ignore. Extreme poverty rose for the first time in twenty years. Some nations had criminally restricted access to life-saving vaccines while others had them in excess. The Black Lives Matter movement in the US and the feminist protests of 8M in Latin America show the growing discontent of populations who suffer constant systemic injustice. On a global scale, climate change poses a menace to the lives of millions of people, especially in impoverished nations, and seems every day to be more inevitable and irreversible. As healthcare professionals, it is necessary that we ask ourselves what our role in this changing social climate is, however uncomfortable the answer might make us.
When Isaac Newton said that he had seen further by standing on the shoulders of giants, he hit the nail on the head. Science and human progress are collaborative efforts, but this does not mean that we should avoid questioning the foundations on which they are built. Who were these giants? Ask any medical student to name three historically famous black or female physicians. Unless they have a specific interest in finding out, they might not be able to. When we speak of the history of modern medicine, we bring up figures like Osler, Virchow, and Freud. All white. All men. Mostly rich. Mostly European or with links to the European upper class. They were geniuses whose monumental work changed what we thought of healthcare, but hundreds of years later we continue trying to heal the world through the knowledge produced by a small part of it. A single perspective.
In my corner of the world, the archetypal doctor continues to be a heterosexual man with money and European facial features. People listen to him and respect him, but every passing year the life experience of this archetypal doctor differs more from the life experience of the people he works with. This disconnection is creating mistrust. It is especially problematic when we begin to notice what this privileged, empowered figure is doing. He gives orders to the underprivileged: the mentally ill, women, people with disabilities, racialized populations, LGBTQ+ communities, and even other healthcare workers themselves: telling them how to live their lives and what to do with their bodies. Healthcare is powerful, and it can be a violent tool for oppression and control, but it can also be a catalyst for social change. This is a conversation that is not restricted to any particular academic background, medical specialty, or field of research because power dynamics are present within all of them.
When a person grants us the ability to make decisions about their body, their lifestyle, and their health, they make themselves vulnerable in the process. Therefore, we must assume the responsibility of working to understand their perspective through the lens of vulnerability and need. As long as these conditions of increased vulnerability remain invisible and unspoken, support will not be given. As long as we justify scarcity and mistreatment because of a person’s vulnerability, making them solely responsible for their outcomes, our duty to help those in need will go unfulfilled. The naming of the condition makes action a necessity, but the nature of this necessary action must be determined by the specific needs of those made vulnerable. To treat only the disease is to forget that certain people will not have access to the means of treatment prescribed and that others will face difficulties that we may not even be able to imagine. Seeing only the cancer and forgetting María makes her more vulnerable to her disease, when she was already vulnerable as a poor person in a classist society, a woman in a sexist society, an indigenous person in a racist society, and a healthcare user in a system that grants great power to physicians.
In his excellent book Behave, primatologist Robert Sapolsky recounts a study where judges were found to dole out harsher sentences right before lunchtime. It is not their fault that they are hungry any more than it is their fault that their brain acts differently under different external stimuli, but it is necessary that they become acutely aware of this effect. Otherwise, unconscious biases persist without anyone noticing. In the same way, not being aware of our privileges as healthcare workers or of our power over healthcare users, especially when they belong to marginalised groups, will inevitably lead us to perpetuate the very structures and behaviours that marginalise and invisibilize them. The processes that create vulnerability are profound and widespread, both within and without the practice of medicine, and mere recognition and reflection will not eliminate the many consequences of systemic injustice and inequality. Understanding how a person’s health is determined by the labels society puts on them will not transform their outcomes overnight, nor instantly grant them access to resources that they should have had access to long before, but ignorance about and indifference to these issues will allow them to continue growing out of control and there will be no cure for the metastases of injustice. Reflection allows us to choose where to focus our efforts and how to direct our resources, however many or few.
Growing up, I was taught what poverty and inequality were, but I could never have imagined the scope of them until I lived through a global pandemic seen from the poorest region of a profoundly unequal country. It was not until I saw, up close, the conditions that make people get sick and actually met the people who become ill that I could start to question how my actions contributed to their problems. Since then, I have begun noticing inequality and injustice wherever I look, because I ceased to see individuals and started to see people within a community. To this day, I still do not understand what it is to be poor, black, female, or indigenous; I do not know what it is like to be orphaned or to live through war, or to be anything other than who I am, but I can learn from the people who are, and I can listen when they tell me what they need. I simply do not believe this can be taught in terms of pure theory, because theory is taught through a system built on inequity which seeks to preserve its own power, even if that means each day leaving more people behind. Medical education gives us power and agency over others with a noble goal, but it is built on a false premise: that the provider will ultimately know what is best for the user. Why not work from the assumption that people know what they need and only seek guidance on how to get it? Why not encourage healthcare workers to go where need is the greatest and to use their agency to empower users to get what they need?
Can we end poverty? Racism? Sexism? Homophobia? It’s becoming increasingly clear that the changes we make as individuals, as important as they may be, do little to address the roots and consequences of these enormous issues. However, one thing we can do now is to start seeking out the uncomfortable truths of being human by looking at ourselves and the users we work with through different perspectives: using the lenses of race, ethnicity, social class, ability, sexual identity, and, in each case, power. To allow our practice to accommodate these questions that have no simple answers is to begin to explore our own relationship to and role within these grand systems of power, which will allow us to create new models of care focused on restoring agency to the underprivileged. I envision a system in which healthcare providers work to create safe environments to discuss vulnerability with healthcare users. One in which users are encouraged to speak up against those whose biases harm them and are supported in finding providers who understand their perspective and can advocate for them. One in which an effort is made for healthcare teams to be truly and openly diverse while fostering respect. One in which medical training is as concerned with the circumstances of a person’s life experience as it is with the inner workings of their body. While it might be profoundly uncomfortable to experience what it is like to give others power over us, that is precisely what users in any healthcare system experience: feeling powerless in their hour of deepest need, stripped of their agency by healthcare providers, whether overtly or insidiously. We owe it to users to give them the power to choose for once.
Healthcare should be a discipline of constant change and adaptation. The growing visibility of inequality in our modern world demands massive social action, and to treat patients as if they were static, as persons without a society, makes as much sense as viewing them as organs without a body or as walking, talking cadavers. It stifles our capacity to aid those who truly need it. We must make an effort to understand and inform ourselves about how the people who get sick are being wronged and how their illness is an extension of the injustices they have suffered, sometimes their whole lives, sometimes even for generations. This information must come from the people who suffer these injustices, because to speak over them is to silence them. It is necessary to seek out discussions that challenge our notion of our place in society and to embrace the complex politics of existing as a human being. We must not be afraid to make our practice social and political, because it already is. Only this will allow us to bring healthcare out of the sterility of the private practices and hospitals of the world and into the hands of the people again, because in the future there will be no medicine without social medicine.
‘There is no thing as a single-issue struggle because we do not live single-issue lives.’
– Audre Lorde, ‘Learning from the 60s’
Foucault M. Naissance de la clinique: une archéologie du regard médical. Paris, France: Presses universitaires de France 1963.
 Stauder M, Vogel AC, et al. Bhutan Epilepsy Project. Depression, sleep quality, and social isolation among people with epilepsy in Bhutan: A cross-sectional study. Epilepsy Behav 2020; Nov;112(107450). doi: 10.1016/j.yebeh.2020.107450. Epub 2020 Sep 15. PMID: 32947250; PMCID: PMC7657980.
 Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: Understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin 2018; Mar;68(2):153-165. doi: 10.3322/caac.21443. Epub 2018 Jan 16. PMID: 29338071; PMCID: PMC6652174.
Williams J, Allen L, Wickramasinghe K, Mikkelsen B, Roberts N, Townsend N. A systematic review of associations between non-communicable diseases and socioeconomic status within low- and lower-middle-income countries. J Glob Health 2018; Dec;8(2):020409. doi: 10.7189/jogh.08.020409. PMID: 30140435; PMCID: PMC6076564.
Lynch J, Smith GD, Hillemeier M, Shaw M, Raghunathan T, Kaplan G. Income inequality, the psychosocial environment, and health: comparisons of wealthy nations. Lancet 2001; Jul 21;358(9277):194-200. doi: 10.1016/S0140-6736(01)05407-1. PMID: 11476836.
Vukojević M. Parental socioeconomic status as a predictor of physical and mental health outcomes in children – literature review. Acta Clin Croat 2017; Dec;56(4):742-748. doi:10.20471/acc.2017.56.04.23
Salinas-Maldonado C. El 10% de los mexicanos concentra el 79% de la riqueza del país, según un estudio. El País 08/12/2021. Available at https://elpais.com/mexico/2021-12-08/el-10-de-los-mexicanos-concentra-el-79-de-la-riqueza-del-pais-segun-un-estudio.html
Bustos M, Luu K, Lau LL, Dodd W. Addressing tuberculosis through complex community-based socioeconomic interventions in low- and middle-income countries: A systematic realist review. Glob Public Health 2021; Aug;17:1-21. doi: 10.1080/17441692.2021.1966487. Epub ahead of print. PMID: 34403306.
Duan K, McBain R, Flores H, et al. Implementation and clinical effectiveness of a community-based non-communicable disease treatment programme in rural Mexico: a difference-in-differences analysis. Health Policy Plan 2018; Jul 1;33(6):707-714. doi: 10.1093/heapol/czy041. PMID: 29697772; PMCID: PMC6005046.
Duan KI, Rodriguez Garza F, Flores H, et al. Economic evaluation of a novel community-based diabetes care model in rural Mexico: a cost and cost-effectiveness study. BMJ Open 2021; 11:e046826. doi: 10.1136/bmjopen-2020-046826
Breilh J. La determinación social de la salud como herramienta de transformación hacia una nueva salud pública (salud colectiva). Rev. Fac. Nac. Salud Pública 2013; Apr;31:13-27. Available at: https://revistas.udea.edu.co/index.php/fnsp/article/view/16637
Bailey ZD, Krieger N, Agénor M, Graves J, Linos N, Bassett MT. Structural racism and health inequities in the USA: evidence and interventions. Lancet 2017; 389(10077):1453–1463. doi:10.1016/s0140-6736(17)30569-X
Brown AGM, Esposito LE, Fisher RA, Nicastro HL, Tabor DC, Walker JR. Food insecurity and obesity: research gaps, opportunities, and challenges. Transl Behav Med 2019; 9(5):980-987. doi:10.1093/tbm/ibz117
Swartz TH, Palermo AS, Masur SK, Aberg JA. The science and value of diversity: closing the gaps in our understanding of inclusion and diversity. J Infect Dis. 2019; Aug;220(220 Suppl 2):S33-S41. doi: 10.1093/infdis/jiz174. PMID: 31430380; PMCID: PMC6701939.
Bibbins-Domingo K, Helman A, editors. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. National Academies Press (US); 2022 May 17(4). Available from: https://www.ncbi.nlm.nih.gov/books/NBK584407/
Simons RL, Lei M-K, Klopack E, Beach, SRH, Gibbons FX, Philibert RA. The effects of social adversity, discrimination, and health risk behaviors on the accelerated aging of African Americans: further support for the weathering hypothesis. Soc Sci Med. 2021; Aug;282:113169. doi: 10.1016/j.socscimed.2020.113169. Epub 2020 Jul 7.
Gopalakrishnan V, Wadhwa D, Haddad S, Blake P. 2021 Year in review in 11 charts: the inequality pandemic. 2021. The World Bank. Available in: https://www.worldbank.org/en/news/feature/2021/12/20/year-2021-in-review-the-inequality-pandemic
Espina CR, Narruhn RA. “I can’t breathe”: biopower in the time of COVID-19: an exploration of how biopower manifests in the dual pandemics of COVID and racism. ANS Adv Nurs Sci 2021; Jul-Sep 01;44(3):183-194. doi: 10.1097/ANS.0000000000000355. PMID: 33657020; PMCID: PMC8323516.
Sapolsky RM. Behave: the biology of humans at our best and worst. 8th edition. New York, USA: Penguin, 2018.
Lorde A. Learning from the 60s. 1982. Available at: https://www.blackpast.org/african-american-history/1982-audre-lorde-learning-60s/