Contributor: Harriet Omondi MSN, APRN, FNP
Systemic racism and racial inequality are two concepts that are deeply ingrained in American history. These two issues come up in every single presidential election where candidates compete for the minority vote by promising reparations for black people and an end to systemic racism. Research has repeatedly revealed that minorities lag in the majority of health-related outcomes and this is often directly linked to racial inequity. In a recent blog post by Dr. Chinn titled, ‘Nursing and Racism: Are We Part of the Problem, Part of the Solution or Perhaps Both’, she eloquently addressed how we as nurses can be a part of the solution in ending racism. This can be achieved by educating ourselves on race relations, teaching our children by example by respecting people that may look different, and being empathetic to black people under our care. Patients trust nurses and easily share their fears and worries and nurses are often tasked with the burden of explaining procedures or give informed consent. Black people have been used in research studies over the years without consent or at times treated without full disclosure. How did this begin and how can nurses help resolve this problem?.
The idea of informed consent began in the early 20th century and thus laid the foundation for the assertion of patient autonomy (Bazzano et al., 2021). Four landmark cases Mohr v Williams, Pratt v Davis, Rolater v Strain, and Schloendorff v Society of New York Hospital set a precedent for patient autonomy and formed the idea of the need for informed consent in medicine and research (Bazzano et al., 2021). In Mohr vs Williams, the patient had agreed to surgery on the right ear but during surgery, the surgeon decided that the left ear was worse off than the right ear and performed surgery on the left ear instead of the right ear (Bazzano et al., 2021, p. 80). The plaintiffs hearing thereafter worsened and she sued the surgeon for battery and assault for performing surgery on the left ear instead of the right as she had previously agreed (p. 82). Mrs. Mohr won the case as the court agreed that the surgeon was wrong for performing surgery on the left ear without her consent (p. 82). I have chosen to discuss informed consent because as much as research is important for the advancement of medicine and technology it is equally important to allow subjects to comprehend what they are signing up for and the potential risks or benefits of research. Participants need to also be aware that if they need to withdraw from a research study they can do so freely without fear of retaliation.
The issue of informed consent is a touchy subject when it comes to minorities especially the black population. This stems from the notion that historically blacks were seen as property and therefore the master did not need permission to do with them as they please. It is well documented that Dr.Marion Sims who is seen as “the father of gynecology” for pioneering successful gynecological surgeries, performed experiments on powerless black slaves without consent. The Tuskegee experiment is another well-known example of racial injustice where young black men some of whom were infected with syphilis were recruited for a research study on syphilis. Informed consent was not obtained for this study and when Penicillin became available to treat the disease the men were not treated. In addition, the men in the study were initially told the study would last six months but it went on for 40 long years where these men suffered the debilitating effects of syphilis without treatment. Fast forward to the 21st century while advances have been made in terms of how black people are treated more is yet to be done.
Working as a primary care nurse practitioner I have encountered countless black patients who distrust the medical system so much so that they would rather forgo medical treatment and seek alternative therapies. This distrust is deeply rooted in medical apartheid that they have witnessed or experienced over the years and it is up to us as nurses and frontline health care workers to empower these patients and provide culturally competent care to ease their doubt. Due to a lack of trust in the healthcare system rooted in racist practices, the black community continues to lag in nearly all aspects of healthcare. This issue has been at the forefront in the past year where we have seen black communities fair much worse on Covid-19 related outcomes, in addition, the vaccination rate among the black community is far less compared to the other races. When I ask my black patients why the hesitancy, the most common answer is, “can’t trust what they’re putting in my body”. One recent example that comes to mind is one of my black female patients was recently diagnosed with breast cancer and advised by her oncologists that she needed radiation after chemotherapy to eradicate cancer. The patient told the oncology team that she did not want radiation because she had a near-death experience during chemotherapy and did not want any more treatment. The oncologist kept pressing the idea of radiation on the patient and per the patient, a “black nurse was brought in to convince me to get radiation.” Ultimately the patient vehemently declined and radiation was not done. This is a classic example of how black patient`s requests are mostly ignored or dismissed with the assumption that they do not know any better.
Therefore, as nurses, we must take into account the complicated history of black people with medicine while providing care. We have to be empathetic to the needs of our black patients keeping in mind that they may have fear of not only the physical ailment but of the providers and the healthcare system as a whole and may need a safer environment. Jean Watson who is one of my favorite theorists once said. “Maybe this one moment, with this one person, is the very reason we’re here on earth at this time.” If we approach each patient with this in mind you never know if you might be the one person who changes their view on the distrust of the medical establishment.
Bazzano, L. A., Durant, J., & Brantley, P. (2021). A modern history of informed consent and the role of key information. Ochsner Journal, 21(1), 81–85. https://doi.org/10.31486/toj.19.0105
About Harriet Omondi
I have been a nurse practitioner for the past seven years, I graduated from Texas Woman`s University in 2014 and immediately started working in a Federally Qualified Health Center (FQHC) where I oversaw a clinic for patients with a dual diagnosis of mental health. When I started at the FQHC the clinic was new and only had five patients and after a year I had a panel of 100 new patients. Currently, I work for UT Health in Houston and care for patients in a primary care clinic. Prior to that, I worked as a nurse for six years with adult medical-surgical patients, pediatrics, and home- health caring for medically fragile children. In the Fall of 2020, I took the bold step of enrolling at Texas Woman`s University to pursue a doctorate in nursing where I have completed two semesters. My primary areas of research interest are obesity, women’s health, and preventative medicine with an emphasis on health promotion.
3 thoughts on “Does Informed Consent Exist for Black Patients?”
Ethics and human dignity have been a part of Christian Health Care since the time of Christ. St. Martin de Porres, St. Camillus de Lillis, St. John, St Marianne Cope provided health care to persons regardless of culture or skin color centuries ago. Nurses educated in the Christian tradition have the knowledge to inform persons of their health care options. “Do no harm” involves informing and treating patients in their best interest. Patients must consent to treatment by signing a consent form. Nursing has to guard against blanket statements that imply :systemic racism” in nursing.
Unfortunately, the act of knowledge acquisition does not guarantee appropriate behavior in practice. Nurses may know and value the concept of treating clients without regard to skin color, but is that their actual practice? Societal influences can undermine appropriate nursing actions from consistently being practiced. The use of cognitive dissonance can also prevent even the most well-meaning, Christian or non-Christian nurse from practicing appropriately. Informed consent is not necessary when the client is deemed “less than”, whether conscious or unconscious bias is in play.
Interesting article Harriet. We need more brave people like you in the fight! Very well written. As a non medical professional I was able to understand most of what you said.