Interview With a Female Fibroids Patient: How One Woman’s Story Speaks Volumes About the US Healthcare System

by Vineeta Abraham, May 6, 2022

Disclaimer: This paper was written for Dr. Marci Lobel’s Psychology of Women’s Health class in Spring 2022. This paper is intended to analyze the real experiences of a woman suffering from health issues. It should be noted that the use of the word “female” in this paper refers to the sex assigned at birth rather than the gender of “women” in general. Name of the interviewee has been changed for confidentiality.

In discussions of menstrual health, we often neglect to pay enough attention to the less apparent changes occurring in our reproductive organs. While one may focus their knowledge of reproductive processes in the female body on the phenomena of menstruation, reproduction, and menopause, there are other symptoms and diagnoses that can impact a female’s menstrual health. 

I was fortunate to have been able to interview Sarah [pseudonym], a 53-year-old registered nurse living on Long Island, about her recent experiences with uterine fibroids, which she identified as noncancerous growths in the uterus. Sarah has been married for 25 years and has three children ages 21, 18, and 16. She is originally from India and moved to the United States in 2003 after receiving her bachelor’s degree in nursing. She follows a Protestant-Christian religious practice and works overnight shifts at Queens Hospital Center. 

Sarah reported finding out about her uterine fibroids at the age of 51, about two years before this interview was conducted. She was lucky enough to have received the diagnosis before experiencing any serious side effects or symptoms. She claimed, “I went in for a regular check-up at my doctor’s office. We had been discussing my anemia for a few visits, so she recommended that I consult with my gynecologist to rule out fibroids.” Unfortunately, the opportunity for a “rule-out” never came. I asked Sarah whether she looked into treatment options upon hearing of her diagnosis of fibroids. She responded grimly, “Yes. The only treatment option is surgery to remove [the fibroids]. That or ablation, which is to block blood supply to the fibroids to shrink them.” Unsurprisingly, Sarah was not eager to undertake such invasive treatment, so after a few weeks of contemplation, she carefully declined. “Temporarily,” she clarified in our discussion. “I won’t be getting any further treatment unless serious complications arise.” She described how having uterine fibroids was not impacting her day-to-day activities any more than other related health concerns that previously existed before this diagnosis. For example, Sarah described how, although 53, she has not yet reached menopause, which is a great cause of concern for her. She also suffers from menorrhagia, which she described as having “severe anemia.” In an afterthought, she added that the fibroids may be adding to this.    

I then asked Sarah about any support or lack thereof she had received from friends and family regarding her diagnosis. She explained that the least support seems to come from her husband: “I asked him to ask around or look into other solutions, if he knows any other doctors, to ask if there are options other than surgery.” He did not follow through with the task, but Sarah did not comment any further on this. On the other hand, she claims better support came from other women, friends or co-workers who had either experienced similar problems or knew of others who had. Sarah described often talking with these women about gynecologist recommendations or side effects in her hunt for more information. When asked if she had felt any financial boundaries inhibiting her from receiving treatment, she said she did not think so, and does not think it would be an issue if she decides to get treatment in the future. 

I also made sure to ask Sarah about how living with this physiological health concern has impacted her mental or psychological health. Fortunately, Sarah replied that she did not experience any psychological differences as a result of her diagnosis. She explained that she is not particularly stressed about having fibroids, as it “doesn’t run in the family, doesn’t give [her] any side effects, and there are no hormonal changes.” She claimed that her lack of distress is one of the reasons she is okay with waiting before jumping into treatment. 

Much of what Sarah discussed with me in our conversation relates to topics discussed in Dr. Marci Lobel’s Psychology of Women’s Health course. For example, Sarah was clear in her explanation of limited options presented to her in terms of treatment for her uterine fibroids. The option of invasive surgery and not much alternative seems drastic and frightening for patients like Sarah. This reminded me of a concept discussed in the “Introduction and Overview” reading excerpted from the Physical Health, Illness, and Healing textbook, in which the authors explained how doctors show “more interest in restricting [women’s] reproductive potential than in treating their illnesses.” Although Sarah has decided she will not be having any more children, she described that she is not comfortable with getting rid of all her reproductive organs, an option presented to her through the discussion of surgery. She mentioned that although she may not want to have kids, she needs those organs to produce hormones for the rest of her life (she also demonstrated a distaste for taking external hormone supplements). The thought of invasive surgery comes with many risks and potential side effects, and is therefore understandably less appealing to women who are caretakers or full-time employees or, like Sarah, both. 

Perhaps this is one of the many reasons Sarah has decided to wait on the decision to treat her fibroids. As she mentioned multiple times in our conversation, Sarah’s fibroids are not an obvious hindrance to her day-to-day routine. In the midst of her hectic work schedule and household responsibilities such as childcare, home maintenance, or cooking, her fibroids are therefore being metaphorically “pushed to the backburner.” This information came as no surprise to me after hearing Dr. Lobel’s lecture on women’s cardiovascular health on February 1, 2022 during which she described how there is often a delay in women seeking healthcare services. Dr. Lobel attributed this delay to factors such as having various other responsibilities or a general lack of knowledge. Sarah’s own testimony relates closely with this concept, as she claimed that her hesitancy to receive treatment came from her desire to learn more information instead of jumping hastily into a decision. This idea of not receiving adequate information was also discussed in the “Introduction and Overview” article, in which the authors described how female patients sometimes receive less information than male patients or report feeling dissatisfied with the communication they had with their healthcare providers. This could come from providers being biased and assuming that male patients are better able to understand their diagnoses or treatment options compared to their female counterparts. However, this lack of strong communication can cause women to feel disrespected or underserved, further discouraging them from seeking healthcare services in the future. True to this idea, when I asked Sarah when the last time was that she went to her provider to check on the status of her fibroids, she responded, “about a year [ago].” Sarah admitted to understanding that the fibroids could grow exponentially in that time frame, and claimed that she will go in for a checkup soon, although she did not clarify when that would be. 

In Sarah’s defense, she has made attempts to remedy her lack of knowledge regarding her diagnosis and treatment options. Sarah described going to her husband primarily to help with the situation. “I asked him to ask doctors that he associates with about other options or if they knew of good places to go for the surgery or ablation.” Sarah’s husband also works in a hospital, and she wished to take advantage of his access to multiple healthcare providers and professional opinions. However, she was disappointed to find that he soon forgot about her situation and never followed through with an inquiry. The lack of support Sarah received from her husband was a theme discussed in Dr. Lobel’s lecture on autoimmune disorders, where she discussed how social support from family and friends can play a large role in the recovery process for female patients. In Sarah’s situation, lack of support from the husband has been a contributor for the delay in her treatment, which may lead to more serious consequences if her fibroids grow.

On the bright side, Sarah claims that she has received better support from her friends and co-workers. Dr. Lobel’s lecture mentioned the benefits of having a support group for patients to connect with individuals who have similar diagnoses or experiences. While Sarah did not attend a formal support group for her diagnosis, she was able to discuss her diagnosis with female friends and co-workers who have experienced reproductive complications. These discussions resulted in sympathy and advice in the form of treatment alternatives or gynecologist recommendations that helped Sarah to feel less alone in her journey. While Sarah, unlike many of the women we learned about in lecture, did not report having serious psychological effects as a result of her diagnosis, she was grateful for the support she received from her friends. This type of support, as we’ve learned, can help women feel less alone in their journey of recovery. 

As seen in our lectures and readings, many of the factors impacting Sarah’s experiences are not unique to her. Female patients are often put in difficult circumstances in which their reproductive organs and menstrual health are endangered, often being placed in situations that male patients and physicians cannot personally relate to. Because of this, it is easy for women to feel isolated or unsure about their treatment options. Women are also disproportionately placed in social frameworks that label them as caretakers or being tasked with other social responsibilities, which adds to the delay in proper treatment. This delay can put them in riskier situations as their conditions may either worsen or become more complicated without proper resources. As in Sarah’s case, there may also be circumstances in which treatment options are available but not ideal, which can also lead to delays and uncertainty in patients. Healthcare services should therefore strive to improve their communication and flexibility in treatment options for females with menstrual and other health related complications. Female patients should feel well supported by both their providers and their social structures throughout their healthcare journeys. 


Hidden Costs, Dirty Lies, and The Illusion of Choice: The Worst of American Healthcare

by Vignesh Subramanian, April 12, 2022

The headlines are the same every year, and have been so for the last half-century: U.S. Health Care Ranked Worst in the Developed World (TIME, 2014); US health spending twice other countries’ with worse results (Reuters, 2018); U.S. health-care system ranks last among 11 high-income countries (Washington Post, 2021). The United States spends more on health care expenditures – both as a proportion of its gross domestic product and on a per capita basis – than any other developed nation, with annual accelerated growth rates in health spending exceeding those of OECD counterparts (Tikkanen and Abrams, Schneider). It is increasingly being understood that the U.S.’s outlier status is the result of higher prices and cost barriers rather than comparatively greater service utilization, with higher payments to hospitals and physicians as well as administrative overheads largely driving the outsized differences in spending (Kurani and Cox). Exactly how egregious the bills sent to American patients can be, however, is hidden in the fine print – an abusive doctrine formulated by medical bureaucracies and providers alike to obscure the truth about how far they are willing to go for profit.

Among the most obvious and decried examples of deceptive charging practices by providers are the various forms of surprise billing that often follow already costly care. Patients who unknowingly receive treatment from physicians who are not in their insurance network are prime targets for additional charges that may amount to tens of thousands of dollars (Kliff and Sanger-Katz). These patients typically do not choose the treating doctors themselves and are not made aware in advance of their out-of-network statuses (usually because of the urgency of required treatment or the availability of specialized providers, as is the case with emergency care or complex surgeries); some may have even sought care at an in-network hospital or urgent care center, reasonably assuming that these facilities employed providers that were similarly covered by their insurance. Nevertheless, these patients end up faced with the prospect of their insurance company refusing to pay an out-of-network balance bill, while collection agencies abandon good-faith protocols as they move to seize debt (Weber). Surprise billing often involves high initial reimbursements demanded by providers, procedures intentionally being redirected to more expensive ‘affiliated’ or ‘consolidated’ sites, and separate facility fees being tacked on; it can also affect non-emergency routine or scheduled care, making the issue a common woe for patients who cannot ‘shop’ for more affordable provider options while under any degree of duress.

The contributions of such bills to soaring healthcare spending cannot be overstated, but represent just the tip of a larger iceberg of unnecessary and inexplicable costs to the average American patient. Surprise bills would not be possible if not for deliberate schemes characterized by so-called “chargemasters” – the comprehensive, hospital-specific compendiums of all services said hospitals may charge for – to keep the realized costs of care hidden until after delivery. Such measures work to withhold, clutter, or bury procedure price lists from or on hospitals’ public sites and web search queries, while selectively publishing ‘starting point’ and ‘prospective’ rates far below those used for Medicare reimbursements and private insurance payments with little basis in market transactions (McGinty). They quietly tuck arbitrarily applied fees, such as those for basic consultation, testing, and diagnostic procedures (e.g. blood draws) or for care that was ‘seriously considered’ or ‘activated’ but not ultimately provided (e.g. trauma response fees), into final bills without patient notification (Gold and Kliff). They enshrine refusals to bring sticker prices for the use of certain technologies (e.g. MRIs) or operative procedures (e.g. hip replacements) in line with those of lower-tier doctor’s offices or otherwise justify or address variation and make comparison feasible across emergency departments, trauma centers, and surgery centers in a given geographic area (Pflanzer). Hospital systems are even willing to charge patients for minimal labor costs (fees charged to new mothers who have just given birth for “skin-to-skin contact” with their newborns are an infamous example), for basic health products like over-the-counter pharmaceuticals, toiletries, and first aid supplies that cost far less at neighboring pharmacies, and for services supporting other parts of the continuum of care at exorbitant levels (e.g. transport services like ambulance rides, despite the fact that EMS crews themselves are not reimbursed for patients not transported to emergency rooms) (Earl, Reed). Collectively, these ‘grab-every-last-dollar’ tactics take gross advantage of the necessity of critical care to bleed American patients dry, making every step into treating facilities as financially punishing as possible while denying them even the fundamental privilege of foresight to predict the final bill.

In a legitimately free market – indeed, of the kind defenders of the U.S. healthcare model contend it is and must remain – the ‘consumer’ is assumed to be able to make choices of free will, with the most accurate information possible on the prices of the goods and services available to them. This premise holds that such informed decisions will in turn guarantee a higher quality of service provided, improving consumer satisfaction while reducing costs as providers compete in a ‘race to the bottom.’ Yet neither that transparency of information nor that freedom of choice are available for U.S. healthcare’s consumer, the American patient. Deliberate and disingenuous attempts by hospital associations and physicians’ groups to bury costs and coerce acceptance of their terms instead take options away from the average American while triggering even more adverse reactions from elsewhere in the market. Insurers, supposedly the representatives of patients’ financial interests, have felt compelled to respond to providers’ effective price gouging by abruptly terminating physician contracts and leaving marketplaces (leaving many patients out in the cold with smaller networks), or else by secretly negotiating with hospitals to establish ‘adjusted payment rates’ and so-called “anti-steering clauses” (long-term agreements to avoid moving policyholders to other providers with lower costs), all without providing adequate notice to policyholders (Miller, Allen, Mathews). Governmental interventions, meanwhile, leave a lot to be desired in substance; recently enacted federal legislation that bans surprise billing and mandates that out-of-network cost sharing must match in-network provider rates, for example, only covers emergency services (and even then does not cover ground ambulances), meaning surprise billing is still possible in a large range of healthcare settings (Mensik). Other promulgated rules requiring hospitals to post price lists and insurers to inform members of discounted rates upfront fail to establish guidelines on making the provided information decipherable, while coming under sustained legal assault by healthcare and business groups seeking to shield their dealings from public view (Chiwaya and Kimelman, Weixel).

The hidden costs and false illusions of choice of service perpetuated by U.S. healthcare providers amount to a dirty lie – one that paints the patient’s inability to find affordable care as a personal failing rather than a carefully constructed outcome. The American system is not broken, but rather working perfectly as designed: to maximize profits by harassing and charging patients to the point of bankruptcy, by any and all means. It is despicable that those means have come to include openly deceiving patients about the true value of costs incurred, rendering them less willing consumers and more cash cows on which any number of charges may be whimsically levied. As our white coat-adorned saviors in operating rooms and I.C.U.s become existential threats to the pocketbook, it becomes extraordinarily difficult not to ask the question: was I, the patient, really the priority?


Works Cited

Allen, Marshall. “Why Your Health Insurer Doesn’t Care About Your Big Bills.” ProPublica, 25 May 2018, propublica.org/article/why-your-health-insurer-does-not-care-about-your-big-bills

Chiwaya, Nigel, and Jeremia Kimelman. “You Can Now Get Your Hospital’s Price List. Good Luck Making Sense of It.” NBC News, 15 Jan. 2019, nbcnews.com/news/us-news/hospital-price-list-chargemaster-rules-trump-mandate-2019-n959006.

Earl, Jennifer. “Doula Explains Why Hospital Charged Parents $39 to Hold Newborn in Viral Post.” CBS News, 13 Oct. 2016, cbsnews.com/news/doula-explains-why-hospital-charged-parents-39-to-hold-newborn-baby-in-viral-post/.

Gold, Jenny, and Sarah Kliff. “ER Bills: A Baby Was Treated with a Nap and a Bottle of Formula. His Parents Received an $18,000 Bill.” Vox, 28 June 2018, vox.com/2018/6/28/17506232/emergency-room-bill-fees-health-insurance-baby.

Kliff, Sarah, and Margot Sanger-Katz. “Surprise Medical Bills Cost Americans Millions. Congress Finally Banned Most of Them.” The New York Times, 21 Dec. 2020, nytimes.com/2020/12/20/upshot/surprise-medical-bills-congress-ban.html.

Kurani, Nisha, and Cynthia Cox. “What Drives Health Spending in the U.S. Compared to Other Countries.” Health Spending, 20 July 2021, healthsystemtracker.org/brief/what-drives-health-spending-in-the-u-s-compared-to-other-countries/

Mathews, Anna Wilde. “Behind Your Rising Health-Care Bills: Secret Hospital Deals That Squelch Competition.” The Wall Street Journal, 3 Oct. 2018, wsj.com/articles/behind-your-rising-health-care-bills-secret-hospital-deals-that-squelch-competition-1537281963.

McGinty, Tom, et al. “Hospitals Hide Pricing Data From Search Results.” The Wall Street Journal, 22 Mar. 2021, wsj.com/articles/hospitals-hide-pricing-data-from-search-results-11616405402.

Mensik, Hailey. “Ground Ambulances, Excluded from Surprise Billing Ban, to Get Scrutiny from Federal Committee.” Healthcare Dive, 22 Nov. 2021, healthcaredive.com/news/federal-committee-ground-ambulances-no-surprises-act/610451/.

Miller, Andy. “Patients Are Getting Stuck out-of-Network Due to Rifts between Insurers and Hospitals.” Fortune, 16 Nov. 2021, fortune.com/2021/11/16/out-of-network-insurance-companies-health-care-systems-hospitals-contracts/.

Pflanzer, Lydia Ramsey. “The Cost of an MRI Can Vary by Thousands of Dollars Depending on Where You Go.” Business Insider, 28 Mar. 2017, businessinsider.com/how-much-an-mri-costs-by-state-2017-3.

Reed, Tina. “Ambulance Rides Are Getting a Lot More Expensive.” Axios, 22 Feb. 2022, axios.com/ambulance-rides-are-getting-a-lot-more-expensive-cee897fe-63b7-4412-aa67-718109773e79.html.

Schneider, Eric C., et al. “Mirror, Mirror 2021: Reflecting Poorly | Health Care in the U.S. Compared to Other High-Income Countries.” Improving Health Care Quality, Commonwealth Fund, 4 Aug. 2021, commonwealthfund.org/publications/fund-reports/2021/aug/mirror-mirror-2021-reflecting-poorly.

Tikkanen, Roosa, and Melinda K. Abrams. “U.S. Health Care from a Global Perspective, 2019: Higher Spending, Worse Outcomes?” U.S. Health Care from a Global Perspective, 2019, Commonwealth Fund, 30 Jan. 2020, commonwealthfund.org/publications/issue-briefs/2020/jan/us-health-care-global-perspective-2019.

Weber, Lauren. “Patients Stuck With Bills After Insurers Don’t Pay As Promised.” Kaiser Health News, USA Today, 11 Feb. 2020, khn.org/news/prior-authorization-revoked-patients-stuck-with-bills-after-insurers-dont-pay-as-promised/.

Weixel, Nathaniel. “New Trump Policy Will Force Insurers to Disclose Prices up Front.” The Hill, 29 Oct. 2020, thehill.com/policy/healthcare/523328-new-trump-policy-will-force-insurers-to-disclose-prices-upfront/.

Nanotherapy: Small Particles for a Big Issue

by Aviram Nessim, April 8, 2022

The incidence and mortality rates of cancer remain at an unreasonably high rate despite the existence of cancer therapies. In 2018, nearly 10 million lives were lost as a consequence of some form of cancer (NIH, 2020). That same year, almost 20 million novel cases of the pernicious disease arose (NIH, 2020). While anticancer treatments, such as chemotherapy and radiation therapy, are credited with increasing survival rates of cancer patients in the last 50 years, these anticancer therapeutics are coupled with unintended consequences. More often than not, survivors are free from malignant cells, but are left to manage chronic, adverse side effects. Maladies caused by the central treatment often require further medical care. Additional ailments arise because these anticancer agents are nonspecific in their targeting, leading to an inability to distinguish between healthy cells and their rapidly dividing, malignant counterparts. This has led to the development and engineering of drugs with the ability to identify healthy tissues while destroying the cancer, furthermore diminishing side effects. 

Over the past decades, nanotherapy has emerged at the forefront of cancer treatment by offering the means to target tumors in a safer and more effective manner through its accuracy and selective delivery. This report will argue for the utilization and prioritization of nanotherapy by explaining how it works, how it has displayed significant benefits in early trials, and why it has the potential to be the superior option for cancer treatment.

The prefix “nano” describes one-billionth of a unit. Nanotechnology is the science that deals with a range of a few nanometers (nm) to several hundred nm, depending on its intended use. A “nanoparticle” is a suitable name as its sheer size can fit one-thousand particles end-to-end within the diameter of a single human hair. Other molecules quantified as nanoparticles include viruses and DNA. Nanoparticles fall under the umbrella of nanotechnology, expressed on an atomic, molecular, and supramolecular scale. Nanoparticles are applied as a cancer treatment, with precise, minimal side effects made possible by nanotechnology. When used to treat ill humans and animals, the nanomedical term for this manipulation of matter on a near-atomic scale becomes known as nanotherapy. 

Three categories of nanoparticles exist: metal, non-metal, and composite. The ideal nanoparticle is based on conditions such as size and shape of the cancerous cells. Once the precise nanoparticle is determined, it is prepared using two delivery methods. Yu et. al state:

All the preparation methods of nanoparticles can be classified into two methods: bottom-up approaches and top-down approaches. The bottom-up approach is essentially through basic units (atoms, molecules and even smaller particles can be used as the basis for assembling the required nanostructures) stacked on each other to form nanoparticles, while the top-down approach is essentially where a whole solid material begins to decompose into nanoparticles (Yu et. al, 2021, 2).   

Nanotherapy adopts a complex and unique ideology that begins with the loading of the nanoparticle to the patient. The different nanoparticle sizes and modes of delivery hit their greatest success rate once the patient’s needs are determined. The approach for nanoparticle synthesis calls for the optimum loading of either a drug, gene, or targeting ligand, which is “fired” at the cancer cell. The most common and aggressive nanomedicines include Abraxane (albumin nanospheres) and Doxil (PEGylated doxorubicin) which prevent cancer from dividing in the lungs, breasts, and ovaries. However, because each patient’s treatment is tailored to his or her diagnosis, nanomedicines and their dosage are unique to each patient. This is the essence of nanotechnology’s engineering: making anticancer agents that specialize in targeting the tumor while mitigating harmful side effects.

Nanotherapy has opened the door for a new era of cancer treatment thanks to numerous studies that demonstrate its great potential for combating cancer. Magnetic nanoparticles to treat mice with brain tumors revealed remarkable and promising findings. First, researchers discovered that the cancerous brain cells were eliminated with a 100 percent success rate, a result current therapies have never achieved. Second and most astonishing, the nanotherapy did not cause any adverse side effects in any of the mice. This outcome was reached through proper antibody loading, correct particle usage, and appropriate preparation methods (Northwestern, 2016). Employing this method also allows the receptors to be recognized and destroyed, thus eliminating threats to healthy cells and reducing side effects. The researchers’ work was praised, namely by lead scientist Dr. Maciej Leśniak. Dr. Leśniak suggested that nanotherapy could possibly be a panacea for a range of cancers. Leśniak stated, “I think this has applications to many types of cancers, from brain tumors to breast cancer. As long as there’s a specific target, you can take advantage of the nanoparticle’s mechanical properties” (Northwestern, 2016). Regardless of the anatomical location, tumors possess unique receptors which can be destroyed with the correct treatment. The research proved that when nanoparticles are properly chosen, loaded, and prepared, the cancer cells are specifically targeted, and unwanted side effects are slim. 

Nanotherapy has also been shown to prevent specific cancerous outcomes from occurring. Researchers created a table showcasing positive outcomes of nanotherapy in malignant tumor patients. In the study, by adhering to the proper nanoparticle guidelines, loading, and preparation, the researchers discovered that nanoparticles in the subject cancer patient were found to have high enhancements of drug accumulation in the tumor (Sutradhar & Amin, 2014). In another patient where the cancer had metastasized, the secondary tumor was successfully destroyed with effective nanotherapy. The research clearly demonstrates the great potential for nanotechnology to be used to defeat cancer varieties.

Nanotherapy is unlike chemotherapy in that side effects are rare, and when they do occur, they are usually not caused by the nanotechnology itself (Zhang, et. al, 2019). Nanotechnology reduces traditional therapies’ side effects since its tailored style of treatment attacks soley the afflicted cells. Although nanotherapy’s side effects are not as common as its chemotherapy counterpart, patients who have been treated with Abraxane and Doxil, the only approved nanomedicines, have reported post-nanotherapy side effects of weight loss, nausea, and diarrhea. While Abraxane has shown to be efficacious and generally safe, Doxil has had many reports of unwanted adverse effects (Wu, et. al, 2017). “Adverse reactions are common after doxorubicin administration, including fatigue, alopecia, nausea and vomiting, and oral sores…Doxorubicin is also associated with significant cardiac toxicity, which limits the long-term use of the drug” (Johnson-Arbor & Dubey, 2021). However, a valid suspicion is that these problems may be from the chemotherapy drugs they contain. One explanation for chemotherapeutic drugs producing side effects is that cancer cells do not differ greatly from healthy cells. Because of their similarity, chemotherapeutic drugs like Abraxane and Doxil that kill cancer cells may also attack normal cells despite the implementation of a different mode of delivery. Therefore, conventional chemotherapeutic drugs could be phased out by less harmful nanotherapeutic agents to eradicate the causation of such unwelcome side effects.

Many cancer patients are recipients of chemotherapy and the incidental effects caused by the chemotherapeutic agents. Unlike nanotherapy, chemotherapy has little ability to be tailored to the patient’s specifications as it has adopted the proverbial “one size fits all” treatment. Patients generally receive the same prescribed conventional chemotherapy with little to no variation.  Chemotherapy is engineered to be arbitrarily fired into the body and kill rapidly dividing cells, which subsequently results in a high mortality of healthy cells. Chemotherapy is not a guaranteed cure and is often shown to be ineffective in combating certain types of tumors. This is due to chemotherapeutic agents being too weak to reach the core of solid tumors and failing to eliminate any of the cancerous cells. Numerous “cycles” of treatment are performed in an attempt to destroy the cancer cells. Chemotherapy drugs are highly toxic and with each “cycle,” greater doses of radioactive particles enter the patient’s bloodstream. This can reduce life expectancy as well as produce possible deleterious side effects.

While many praise and are grateful for the life saving results of chemotherapy, in the long run, the often undesirable side effects may do more harm than good. I personally have seen the effects of chemotherapy through the experiences of one of my closest childhood friends that went to both my elementary and middle school. Thankfully, chemotherapy cured Jon of aggressive leukemia. While we all celebrated, his parents were mindful of the potential side effects they were advised of prior to their son’s treatment. Shortly after his final chemotherapy treatment, Jon began attending routine appointments, tests, scans, and procedures, the effects of which would remain with him for the rest of his life. Now in his late teens, Jon routinely visits many specialists to ensure his cancer does not return or metastasize, as well as making sure that his chances of reproduction are not being affected. The chemotherapy that was a blessing over a dozen years ago has also caused Jon high levels of anxiety, irrational behavior, mood swings, body image disorder, learning issues, and clinical depression. One cannot help but wonder: had Jon had the benefit of nanotherapy, would he perhaps not be facing these issues today?

Although cancer is one of the most dreaded and lethal diseases, there is a lack of awareness of current treatments for the cancer patient (WHO, 2022). Nanotherapy has strong potential to eliminate the lethal disease and decrease side effects that are produced by conventional therapies. Supported by research, nanotherapy could lead the way to the widespread implementation of the less harmful remedy for cancer patients. As further research and clinical trials are conducted, I am confident that these small particles will develop into safer, more effective life saving solutions.


References

Dunne, N. (2016, February 19). Nanoparticles destroy cancer with mechanical force. Northwestern University Feinberg School of Medicine News Center. https://news.feinberg.northwestern.edu/2016/02/nanoparticles-destroy-cancer-with-mechanical-force/

Johnson-Arbor, K., & Dubey, R. (2021, August 16). Doxorubicin. StatPearls [Internet].  https://www.ncbi.nlm.nih.gov/books/NBK459232/

Miller, Wilkes, Wahab, O’Connell, Legha, Ruddy, & Griffiths. (n.d.). Side effects of cancer treatments. CancerQuest. https://www.cancerquest.org/patients/side-effects

National Cancer Institute. (2020, September 25). Cancer statistics. https://www.cancer.gov/about-cancer/understanding/statistics 

Sutradhar, K. B., & Amin, M. L. (2014, January 16). Nanotechnology in cancer drug delivery and selective targeting. International Scholarly Research Notices, 2014, https://doi.org/10.1155/2014/939378

World Health Organization. (2022, February 3). Cancer. https://www.who.int/news-room/fact-sheets/detail/cancer

Wu, D., Si, M., Xue, H. Y., & Wong, H. L. (2017, August 16). Nanomedicine applications in the treatment of breast cancer: Current state of the art. International Journal of Nanomedicine, 12, 5879–5892. https://doi.org/10.2147/IJN.S123437

Yu, Z., Gao, L., Chen, K., Zhang, W., Zhang, Q., Li, Q., & Hu, K. (2021, May 20). Nanoparticles: A new approach to upgrade cancer diagnosis and treatment. Nanoscale Research Letters, 16(1), 88. https://doi.org/10.1186/s11671-021-03489-z

Zhang, Y., Li, M., Gao, X., Chen, Y., & Liu, T. (2019, December 17). Nanotechnology in cancer diagnosis: Progress, challenges and opportunities. Journal of Hematology & Oncology, 12(1), 137. https://doi.org/10.1186/s13045-019-0833-3

The Labor of Delivering Gender: A Case Study in Integrating Gender and Sexuality Studies into Medical Education at Stony Brook University

by Sophia Garbarino, March 3, 2022

Abstract

This essay examines maternal healthcare practitioners’ perspectives about and experiences with incorporating sex- and gender-based medicine (SGBM) into healthcare training at Stony Brook University, a leading medical institute in the United States. SGBM refers to the style of clinical practice that accounts for the ways in which biological sex characteristics and social constructions of gender affect healthcare outcomes. This method is particularly critical for women’s and reproductive healthcare providers because they routinely treat patients that experience gender and its unique interactions with other sociocultural factors. Within the wide range of literature discussing the need to integrate an SGBM lens into medical education, only a handful of scholars have examined why it is so difficult to actually accomplish. Building on this emerging body of evaluation research, I conducted several oral interviews with faculty at the Stony Brook Schools of Medicine and Nursing, discussing how they have reacted to this relatively new but essential field of medicine from the early 1990’s to today. The university has recently claimed that its health institutions are progressive both politically and practically, but I argue that “progressive” is an exaggerated description. Based on the interviews, instructors continue to face institutional as well as logistical barriers to incorporating an intersectional gender lens into their didactic and practical curricula. Furthermore, this case study offers insight into how practitioners can improve the ways they currently teach gender in order to produce more equity-conscious and diversity-respecting maternal care providers.


Full Text

“Learning is not attained by chance, it must be sought for with ardor and diligence.”

– Abigail Adams (“Abigail Adams,” 2019).

Introduction

Medicine, particularly medical education, has historically ignored the humanities and social sciences, especially intersectional gender and sexuality studies. Maternal and reproductive health scholarship that actually includes women as its subjects and researchers did not emerge until the women’s health movement rooted itself in American academia just over two decades ago. However, the field’s first fifteen years or so focused on biology-based differences between men and women with minimal regard for any individuals identifying outside the cisgender, heterosexual norm. Gender and sexuality only entered the conversation in the last five years, and even now, intersectionality is barely acknowledged. Medicine continues to primarily use the additive model, which considers various forms of oppression (sexism, racism, ableism, etc.) separately rather than examining how they operate inseparably (Kang et al., 2017).

And yet, intersectionality is more important than ever before, especially in the United States. The number of Americans who identify as a person of color and/or LGBTQ* grows every day (Jones et al., 2021; Jones, 2021). Therefore, it is imperative that medical providers understand how to treat their patients with respect for diversity in all its forms. As with any sustainable change, the process of removing heteronormativity from medical practices must begin with medical training. In this essay, I aim to provide a snapshot of where American medical education stands on the inclusivity stage. I will accomplish this by examining maternal, reproductive, and family healthcare practitioners’ perspectives about and experiences with incorporating sex- and gender-based medicine (SGBM) into education at Stony Brook University, a leading medical institute in the United States. These perspectives reflect the larger institution’s state of inclusiveness and progressiveness.

For reference, SGBM refers to the style of clinical practice that accounts for the ways in which biological sex characteristics and social constructions of gender affect healthcare outcomes. This method is particularly critical for women’s and reproductive healthcare providers because they routinely treat patients that experience gender and its unique interactions with other sociocultural factors. Building on this emerging body of evaluation research, I conducted several oral interviews with faculty at the Stony Brook Schools of Medicine and Nursing, discussing how they have reacted to this relatively new but essential field of medicine from the early 1990’s to today.

Stony Brook University has recently emphasized its “progressive” approach to healthcare, especially regarding women’s and LGBTQ* populations. In response, I argue that while the Schools of Medicine and Nursing are certainly more aware of SGBM than they were two decades ago, the university still lacks clear intersectional gender- and sexuality-inclusive training and approaches the education they do have in a non-inclusive, binary way. In this essay, I will provide historical context for my analyses by briefly summarizing key events in the trajectories of feminism, the Women’s Health Movement, and sex- and gender-based medicine (SGBM) in the late twentieth century. I will then conduct an in-depth analysis of my case study research and its implications. Finally, I will conclude by proposing potential ways for practitioners to improve how they currently teach gender in order to produce more equity-conscious and diversity-respecting maternal care providers.

Background

How maternal and reproductive medicine evolved with American politics

When Betty Friedan’s groundbreaking book The Feminine Mystique was published in 1963, America began to realize that many of its women were dissatisfied with simply being housewives (Churchill, 2020). After World War II, women were not especially keen on relinquishing the professional and financial freedoms they had found in the factories while the men were fighting overseas. Simultaneously, the Stonewall Riots in 1969 marked the birth of what is now commonly referred to as the modern LGBTQ* rights movement (Duberman, 1993). In the following decades, both of these marginalized groups would find themselves at the center of the global political and  health stages.

Policy and health were particularly inseparable during this era. The 1990s saw what is now known as Third Wave Feminism, placing women’s experience at the center of American politics and “integrat[ing] an ideology of equality and female empowerment into the very fiber of [American] life” (Walker 400, 1992).Women delayed marriage into their mid-twenties, felt sexually liberated, and entered male-dominated careers (Yarrow, 2018).Yet, the fight for equality raged on in the political and medical arenas, clashing in landmark health-related historical events such as the Anita Hill sexual harassment hearings (Gross, 2021), Planned Parenthood’s fight against conservatives over abortion rights (Prescott, 2019), and the Violence Against Women Act of 1994 (“History of VAWA”).

In the same decade, the Women’s Health Movement was progressing with full-force activism: reproductive endocrinologist Florence Haseltine co-founded the Society for Advancement of Women’s Health Research in 1989, which helped to pass the Women’s Health Equity Act one year later and created the Office of Research on Women’s Health at the National Institutes of Health. In 1993, following the groundbreaking discovery that the HIV virus can pass from pregnant parent to fetus, Congress required the inclusion of women in NIH-sponsored clinical research trials (Liu and Mager, 2016). Prior to this mandate, women of childbearing age were considered too high-risk to participate in clinical research due to the possibility of pregnancy, severely inhibiting knowledge production about sex and gender in healthcare (Participant 3, 2021). It was these socio-political and medical paradigm shifts within women’s health research that gave rise to what is now referred to as sex- and gender-based medicine (SGBM). Within the wide range of literature discussing the need to integrate an SGBM lens into medical education, only a handful of scholars have examined why it is so difficult to actually accomplish.

How sex- and gender-based medicine was born

In the midst of this emerging field of women’s health intervention evaluation, Lorena Alcalde-Rubio et al. reviews 22 articles that evaluate clinical interventions aimed at “reduc[ing] variability in healthcare,” five of which focus on sexual and reproductive health (Alcalde-Rubio, 2020). The majority of the 22 evaluations supported standardizing protocols as a feasible method of systemic change, which is consistent with the faculty’s opinions during my interviews. However, Alcalde-Rubio’s review does not specify what types of protocols should be standardized and importantly notes that 15 out of the 22 evaluations did not utilize gender perspectives adequately. Further, the review significantly reflects a larger fault in medical academia: researchers often focus too much on the purely clinical aspect of change. When it comes to destabilizing social constructions that are ingrained in us and impact every aspect of human life both inside and outside of medicine, education plays a, if not the most, critical role in producing systemic change. In other words, we cannot fix the problem without addressing its roots. As such, I will primarily address the education aspect that Alcalde-Rubio et al. does not.

A 2005 Dutch study (Verdonk et al.) attempts to explore the potential for long-term change in medical education. Researchers concluded that a lack of guidelines, political ideology conflicts, and the educators’ own levels of dedication contribute to the gap between what should be taught and what was actually being taught. Further, certain factors must be present to successfully incorporate gender into medical training, including faculties’ personal experiences and motivations, practical support, and “executable” proposals for adjustment. This suggests that the Western medical educators were generally aware of the need for gender education in the 1990s, the decade during which many of my interviewees were medically trained here at Stony Brook. However, Verdonk, like many others in the field, conceptualizes gender as binary and essentialist.1 To make any meaningful progress, modern medical educators need to start deconstructing the gender binary and validating identities and sexualities beyond the cisgender, heteronormative ones.

Like Verdonk et al., Mary Rojek and Marjorie Jenkins (2016) examined medical schools, but this time in the United States. They surveyed faculty from medical schools that had already successfully integrated SGBM into their education. Their results suggested “it was important to involve all stakeholders… linking curricula to experiential learning and research. It was important to support faculty by providing them with educational resources” (Rojek and Jenkins, 2016). The majority of schools, though, are still behind in adding a sex- and gender-based lens to formal medical education. My research supports Rojek and Jenkins’ conclusions that formal institutional support is a crucial factor in determining integration success.

Also similar to Verdonk et al.’s case study, Hsing-Chen Yang examined the Eastern (Taiwanese) medical world’s perspectives about gender. Asian beliefs and social norms about gender are significantly different from Western ones, and even between individual Asian cultures themselves. Because Stony Brook’s Renaissance School of Medicine began accepting international applicants in 2014 (Medical School (MD) Applicant Profile, 2021), along with the majority of graduate students across the university identifying as people of color (Stony Brook University Fall Headcount, 2021), it is crucial to consider a diverse set of approaches to medical education. Because patient populations are now increasingly diverse—fueled by immigration and globalization—healthcare providers need to have a basic understanding of how gender functions in different cultures. Yang’s surveys found that healthcare professionals and teachers generally believe that sexism, gender awareness, gender equity, and patriarchy are among the most important to teach but this prioritization is not reflected in practice. However, the study omits two key factors: historical context and sociocultural context. Sexism, gender, and patriarchy have various meanings depending on the patient’s and the provider’s respective backgrounds. Therefore, Yang’s conclusions may be limited to predominantly Asian regions.

To see if Yang’s results holds true in Western medical culture, I came upon a 2010s-era study that revealed that American students also lack sex- and gender-based medical (SGBM) training, Majorie Jenkins et al. (2016) surveyed 1097 medical students across five major medical student organizations in order to examine institutional response to these findings. Jenkins’ survey suggests that while medical students are generally aware of SGBM’s existence, the majority do not receive adequate SGBM education at their respective medical schools. While it provides a solid look at what other American healthcare schools are doing about SGBM in relation to Stony Brook, Jenkins focuses solely on students’ perspectives rather than those of faculty, not accounting for logistical and institutional obstacles instructors face that students may not be aware of. I aim to fill this knowledge gap in this case study.

Methods

Stony Brook University

Stony Brook University (SBU) grew alongside the women’s movement. The university was founded in 1957 (“History and Mission”), and its Renaissance School of Medicine (RSOM) opened in 1971 (“History,” 2019). The RSOM currently houses 25 professional departments, including “Obstetrics and Gynecology,” which is an influential player in university progressive politics (“Departments,” 2019; Participant 5, 2021). One year after the RSOM admitted its first class, the SBU School of Nursing (SON) opened in 1972 (Strategic Plan 2016 to 2021, 2017). Graduate-level programs were gradually added in the following years, and the school’s first doctoral-level program, the Doctor of Nursing Practice (DNP) program, admitted its first cohort in 2007 (Participant 2, 2021). Now, Stony Brook’s Hospital is considered one of the best in the United States and boasts progressive and inclusive practices. This makes it an ideal institution to study the emerging field of sex- and gender-based medicine, especially considering its diverse student and faculty profile.

Sample

While gender undoubtedly affects all areas of health, obstetricians (OBs), gynecologists (GYNs), and nurses typically have the most direct patient contact with populations where gender is uniquely related to healthcare outcome (Participant 5, 2021). For example, maternal care and reproductive care specialists may see pregnant trans patients, same-sex couples with fertility concerns, and Black cisgender women, who have disproportionally higher rates of maternal mortality in the United States (“Working Together,” 2021). For this reason, I individually interviewed a total of six faculty at Stony Brook University, including three OB-GYNs from the Renaissance School of Medicine and three from the School of Nursing. Participants were recruited via email outreach based on whether they attended Stony Brook University for their undergraduate degree, graduate degree(s), residencies/fellowships, or any combination of those three. Each interview was approximately thirty minutes long and conducted over Zoom or phone call between the months of September 2021 and November 2021.

Table A. Participants’ Educational Backgrounds

ParticipantType of ClinicianHighest Degree EarnedResidency
1Medical doctorMD*OB GYN*
2Nurse practitioner and midwifeDNP*N/A
3Pediatric nurse practitionerPh.D.*N/A
4Family and acute care nurse practitionerDNP*N/A
5Medical doctorMDOB GYN*
6Medical doctorMD*OB GYN*
Key
DNP – Doctor of Nursing Practice
MD – Doctor of Medicine
PhD – Doctor of Philosophy
*Completed at Stony Brook University

Interview Questions

Educational Background

I asked the participants five main questions about various gender- and sexuality-related topics. The first question asked about the participants’ educational backgrounds, including where they earned their undergraduate degree(s), graduate degree(s), and where they completed their post-doctoral residency and fellowships if applicable.

Gender & sexuality education as a student

The second question asked about the participants’ experiences – or lack thereof – learning about gender as a student, including as a medical or nursing student and graduate-level nursing student or medical resident. 

Current gender & sexuality education

The third question asked participants to compare their own student experiences to what current SBU students learn about gender. The fourth question asked about their experiences and opinions about teaching gender as a professor, including what challenges they may face and how they address them.

Institutional support

The fifth question asked participants if the university has offered and/or currently offers opportunities for faculty to further their own knowledge about gender and sexuality in healthcare, and if so, what types of opportunities and how helpful they were.

Results & Discussion

Participants’ own gender and sexuality training

None of the participants had any formal education about gender nor sexuality, with the exception of studying purely biological sex differences, when they were medical/nursing students. All participants received their first clinical degrees (BSN or MD) in the 1990s or early 2000s. At the time, SGBM was just beginning to grow as a legitimate field of medicine and was more commonly referred to as “gender-based biology” (Madsen et al., 2017).

For example, a few of the participants from both the RSOM and SON recalled learning about sex differences in symptom presentation and risk levels for certain conditions, such as the fact that men are more likely to have a heart attack while women typically show less obvious signs of a heart attack like pain similar to that of severe indigestion (Participant 3, 2021). Participant 2 recalled learning absolutely nothing about gender, especially its interactions with race and ethnicity. As a Black woman, she did not feel supported by the School of Nursing while earning her degree. Therefore, diversifying nursing education is particularly important to her, so a tremendous portion of the efforts to update the midwifery curriculum comes directly from her. This aligns with Verdonk’s 2005 findings, where a specific professor of Women’s, Gender and Sexuality Studies was an “important stimulus” and “trigger” person for SGBM integration. For Stony Brook’s midwifery program, Dr. Findeltar-Hines is the “trigger” person.

Another important consideration is that in the 1990’s, patients were often quite hesitant about revealing their gender identity and/or sexuality to practitioners (Participant 6, 2021). Furthermore, gender-affirming care standards, mostly relating to gender-affirming surgeries, did not exist until 1979 (Frey et al., 2017). The first major case study in hormonal puberty blockers, now a major treatment option for transgender, non-binary, and gender non-conforming pediatric patients, was not published until nearly twenty years later in 1998 (Cohen-Kettenis et al., 2011). Clinical progress took decades, and the curricula were trailing far behind as a result. This aligns with the Verdonk et al. case study of the Dutch medical center (2005), in which faculty’s personal experience and motivation was found to be a key factor in ensuring the success of gender education integration. Unlike the Dutch case study, though, Participant 2 acknowledges that gender exists on a spectrum and does not conceptualize it in mere binary terms, perhaps contributing to the Midwifery program’s progressive success in recent years. According to Participant 2, the program’s instructors have created a trans patient case study, use gender-neutral pronouns whenever possible, and are currently working on implementing gender/sexuality- and race-specific lectures.

This level of dedication to building gender-inclusive training is not consistent across the nursing and medical schools, however. While some participants recalled learning about “special populations” (Participant 4, 2021), which include trans and gay patients, it was from a very “cisgendered” perspective (Participant 1, 2021). This special population education was also added to the curriculum out of political pressure rather than student/faculty motivation. In the 1990s, HIV and AIDS awareness skyrocketed to the top of major health institutions’ priority list as the AIDS epidemic entered its “Middle Era” and gained international attention (Durvasula, 2018). This increased public health attention to women’s and reproductive health disparities, but commonly used terminology like the “4H Club [homosexuals, hemophilliacs, heroin users, and Haitians]” were homophobic and racist, essentially doing the opposite of increasing gender and sexuality awareness (Participant 3, 2021). In fact, prior to the AIDS epidemic, those who identified as female were prohibited from participating in medical research, so it’s not surprising that health practitioners and academics ignored gender education.

What current SBU students learn

Current SBU students learn more than participants’ did but the integration of gender and sexuality into the curriculum is slow. Challenges include time constraints (Participant 1, 2021), disparities in instructors’ own knowledge about the topics (Participant 1, 2021), and resistance from more traditional faculty (Participant 2, 2021). Ultimately, it is up to individual faculty to decide how much they want to adjust their curricula to include diversity education.

The Renaissance School of Medicine did not start internally pushing for inclusive education until two to three years ago (Participant 1, 2021; Participant 6, 2021), and since then, progress has been very slow. The majority of interviewees recognized the need for specialized gay and trans* education, but that was about the extent of their reported knowledge. Only one or two faculty mentioned non-binary and gender-nonconforming patients (Lian, 2021;  Participant 3, 2021), and one mentioned the relationship between race, socioeconomic/citizenship status, and healthcare outcomes (Participant 6, 2021). None offered evidence of education that focuses on the vast variety of other gender and sexuality spectrums, including sexualities that are not strictly straight/gay/bisexual. Only one doctor mentioned how clinical placement affected patient populations. For example, attending physicians working at a Flushing, NY clinic might see more Asian patients while someone working in a “resident clinic” would typically see patients in less privileged socioeconomic groups. The resident clinics have more Hispanic and non-English speaking patients “by default” (Participant 6, 2021).

It is also worth noting that while a few participants mentioned race, gender, sexuality, socioeconomic status, and ability status separately, it was evident that all of them viewed gender and sexuality using an additive lens. The additive model considers systems of oppression to be individual entities rather than structures that cannot operate without one another. Intersectionality was undoubtedly an unfamiliar term, so interviewees were largely unable to answer questions about the intersections of identity factors like gender and sexuality. A potential cause of this issue is the lack of precise terminology in the broader field itself (Madsen, 2017).

The School of Nursing, however, began adding diversity and inclusion to its branding in 2017, which, coincidentally, is the same year the Midwifery Program appointed the first woman of color as its Director. In its academic success goals, the Strategic Plan 2016 to 2021 (2017) specifically lists “recruit diverse nursing faculty” and “expose [nursing students] to global health and healthcare disparities.” Since then, the midwifery program has been adapting lectures to use more inclusive terminology, such as saying “patient” instead of “woman” and “parent” instead of “mother.” Additionally, the program was the first in the SON to add a transgender-specific case study to the curriculum. As the program director noted in her interview, “Education is always evolving… We [educators] have to stay creative and innovative in order to get the basic education things that we want learned [by the students]” (Participant 2, 2021). This is both in agreement and in direct contrast with Yang’s Taiwanese survey of healthcare professionals and teachers regarding gender education expectations. Yang claimed that workplace sexism is a primary cause of the disparity between what instructors believe should be taught and what is actually taught about gender. She also argued that this same sexism prevents educators from viewing gender as a human issue rather than a “woman issue” (Yang, 2020). Participant 2 suggests that all educators must address gender education, including the traditionalists, and simultaneously expresses that workplace discrimination is not an excuse for lack of progress.

All faculty are required to retain clinical practice while teaching, and all participants hold additional leadership positions within their respective schools (Participant 4, 2021). Combined with minimal access to formal training, some traditionalists would say that faculty simply don’t have the time to educate themselves about gender so it is much harder for them to teach it (Participant 1, 2021). However, integration does not necessarily need to involve revamping the entire curriculum (Participant 3, 2021). Faculty could also incorporate gender diversity education into existing training, such as making a simulated patient a woman of color or a child with two mothers. Additionally, instructors could use case studies to emphasize a wide variety of lessons, such as Participant 2’s pediatric case study with a transgender (assigned female at birth) patient named “Timmy” (2021). This case study provides opportunities to practice using proper gender pronouns, learn about hormonal gender affirming treatments, and how to interact with parents of gender-diverse children. Across all interviews, participants said that they would like to improve the time dedicated to gender and sexuality education, so the motivation is there. These sentiments align with those of the students that Jenkins et al. surveyed in 2005, meaning formal course offerings have not improved much since then.

According to the participants, the students are the main driving force behind integrating gender and sexuality training into their healthcare studies. This result was also expected based on the Jenkins et al. survey (2005). On top of being very receptive and eager to learn about diversity, they even provide feedback asking to learn more (Participant 2, 2021; Participant 1, 2021; Participant 4, 2021). Depending on clinical placements, students also have the opportunity to interact with diverse patient populations (Participant 4, 2021), and at Stony Brook Hospital, residents consistently see high levels of diversity (Participant 5, 2021; Participant 1, 2021). While not all healthcare practitioners will work directly with gender-diverse patients, it is still extremely important for all medical providers to understand and be able to apply gender-inclusive theories. According to a recent 2021 Gallup poll, 5.6% of American adults, and one in six adults in Generation Z alone, identify as LGBT (Jones, 2021). Furthermore, the U.S. Census estimated that in 2019, over 36% of women were women of color, and this proportion is projected to grow to over 55% by 2060 (“Women of Color in the United States,” 2021). These statistics are particularly relevant to maternal and reproductive healthcare; therefore, it is critical that these healthcare providers are trained, at least on a basic level, in gender and sexuality studies (Participant 5, 2021).

Institutional support

Based on Verdonk’s 2005 study of a Dutch medical center, institutional support must be present in order to successfully incorporate sex- and gender-based education into healthcare curricula. This may be in the form of financial resources, guest lecture support, accessible educational resources, and visual/presentation support (Verdonk, 2005). With this in mind, I asked participants about how Stony Brook University supports its healthcare faculty in diversifying the curricula, if at all.

Using a binary gender lens

SBU as an institution provides some structured learning opportunities for faculty specifically about using an intersectional gender lens when practicing healthcare, but students and faculty want more. In terms of gender education, because the topic is so relevant to daily patient care for OB GYNs, a few formal lectures have been offered, and OB GYN residents discuss gender- and sexuality- related cases during grand rounds (Participant 5, 2021). For medical students, as of 2020, all SBU medical and dental students are required to take a “Transition to Medical and Dental School” course that talks about gender and diversity issues (Participant 1, 2021)

Using a heteronormative LGBTQ* lens

In terms of LGBTQ* inclusivity, two of SBU’s major medical institutions, Stony Brook Medical Center and Stony Brook Southampton Hospital, scored a 100/100 on the Human Rights Campaign (HRC) Foundation’s 2020 Healthcare Equity Index [HEI] and were named LGBTQ Healthcare Equality Leaders (Healthcare Inequality Index 2020).2 According to Stony Brook, “[t]he HRC is the largest national lesbian, gay, bisexual, transgender and queer civil rights organization” (“Health Equality Leader,” 2021). However, the HRC has received a substantial amount of criticism for, despite its claims, failing to represent and advocate for LGBTQ* folks of color. Much of this controversy surrounded the Don’t Ask, Don’t Tell Repeal Act of 2010 (“H.R.2965,” 2010). In the months leading up to its official passing, the HRC used a disabled, gay veteran of color to promote fake inclusivity while it simultaneously “profited from the practice of diversity management” (Montegary, 2015). Further, the HRC has been called “cisgenderist” and white supremacist for several years (Johnson, 2011; Rosen, 2021). As such, their HEI rating may not have as much practical weight as Stony Brook claims.

Stony Brook University released an LGBTQ+ Health Needs survey in early summer 2021 and received over 1,218 responses from Long Island, NY residents as of September 30th, 2021. Its purpose is to “provide information critically needed by healthcare providers, social service providers, government officials and public health staff to expand service offerings and serve as effective advocates for LGBTQ+ people” (“LGBTQ+ Health Needs Survey”). Moreover, the survey was made available in both English and Spanish, increasing access to non-English speakers. Suffolk County alone is 20% Hispanic/Latinx, according to the U.S. Census Bureau estimates (“Quick Facts”).

Both the Stony Brook Medicine [SBM] and the School of Nursing [SON] have recently created committees to educate practitioners and spread awareness about gender-informed care. The SBM LGBTQ* advisor committee meets monthly and aims to establish a set of priorities for LGBTQ* patient care, as well as create a more welcoming environment for patients, practitioners, and staff (“Two Stony Brook Hospitals;” Participant 1, 2021). Additionally, the SON’s brand new IDEA committee [Inclusion, Diversity, Equity, and Access] aims to use student feedback to build a more inclusive learning environment (Participant 4, 2021; Participant 3, 2021). Faculty veterans accustomed to traditional academic politics may argue that committees are a poor use of resources, especially in higher education; however, as university administration researcher David Farris writes in “Not Another Committee” (2017), with regular communication, perceived equality among members, and actively focused leaders, committees can actually be quite effective. Nonetheless, it is still important to note that the learning opportunities produced by these committees, particularly at Stony Brook, are created for clinician audiences and are less advertised to didactic instructors (Participant 1, 2021).

Hiding behind generalized health inequity

Pre-COVID, nursing faculty went on a few retreats that focused on diversity inclusiveness, but it was addressed in a very general manner (Participant 4, 2021). Recently, Stony Brook Medicine ran a two-day conference entitled “The Long March to Equity,” which covered general healthcare disparities and their historical trajectories into modern day medicine (Participant 3, 2021). This was the only example mentioned by multiple participants, and I was unable to find any other examples.

One OB-GYN did mention Women’s Health Day, an annual conference at the Renaissance School of Medicine that focuses on various health issues (cardiovascular, eyesight, muscle, breast cancer, etc.) and is exclusively targeted at an all-female audience (Participant 6, 2021; “Women’s Health Day,” 2019). This participant noted that the OB-GYN department also hosts a women’s health clinic on the same day at which anyone can get a routine check-up for free. The department has also started a bi-weekly clinic that provides discounted services for uninsured patients (Participant 6, 2021). However, she also explained that basic needs such as transportation already inhibit many of their regular patients from accessing necessary healthcare appointments. While treating women for free or at lower rates is somewhat helpful, it does not address the issue of inequitable access in an intersectional way; essentially, these clinics are just a Band-Aid solution to a deeper, more complex problem.

Distinct differences between medical and nursing education

The next result I will discuss was unexpected but certainly worth noting. I found clear differences between the perspectives/openness of the medical doctors and nurses. While the medical and nursing models have been known to be incredibly separate for decades (Reed and Watson, 1994), I was surprised by how much the models impacted the providers’ perspectives on sex- and gender-based medicine. For reference, the medical model focuses on “diagnosis, treatment, and cure” and has been widely criticized for its “narrow and unsatisfactory view (Reed and Watson, 1994). On the other hand, the nursing model “offers a more humanistic approach to patient care” (Reed and Watson, 1994).

The Medical Model’s Shortcoming

During the interviews, OB-GYNs consistently steered their responses towards healthcare outcomes, while I found the important connection between education and patient experience to be missing. For example, medical doctor participants mentioned “sobering” maternal mortality statistics, grand rounds3 (Participant 5, 2021), and student feedback being important (Participant 1, 2021), but only one explicitly said they prioritized making patients “feel more comfortable… and heard” (Participant 5, 2021). Yet, is the entire reason for improving medical education to benefit the patients?

Additionally, all three of the OB-GYNs discussed referrals4 as a way to support gender- and sexuality-based diversity. While having and being knowledgeable about sufficient resources is absolutely necessary, it does not address the alarming fact that many maternal and reproductive care providers are entirely unfamiliar with the concepts of intersectionality and non-binary gender and sexuality spectrums. Patients should not need to see another doctor in order to be treated with bare-minimal respect and dignity.

The Nursing Model’s Humility

On the contrary, nursing faculty were much more open to discussing how their personal experiences and medical training affects the quality of care they deliver. For example, Participant 3 took a few gender studies courses during her undergraduate career at Stony Brook, which exposed her to “thinking about other cultures, other health belief systems that wasn’t just coming out of a textbook” (2021). This, she said, impacted both the way she teaches and the way she cares for her queer5 patients, particularly helping her grasp new concepts like non-binary genders and different cultural understandings of disability. Here, the connection between the importance of inclusive education and patient experience is clear. Further, Participant 4 explained how crucial it is for students to work with diverse patient populations during school so that when they enter the workforce as licensed providers, they will already have achieved at least a basic level of intercultural competence.

Faculty diversity

One final point I must discuss is that all six participants identified as women, and four identified as women of color (see Table A on page 9). This sample is not representative of the Renaissance School of Medicine’s and School of Nursing’s faculty at all. The School of Medicine’s Obstetrics and Gynecology department has 42 physician faculty, of which only 13 (about 30%) are women of color. Furthermore, not a single woman is a full professor (with tenure). The department Director and Chair, the two highest leadership positions in the department, are also both white men (“Our Providers,” 2021). Within the School of Nursing, there are 32 faculty, of which 27 (about 84%) are white women and 4 (12.5%) are women of color. There is only one woman of color who holds a director-level position (“Faculty & Staff Directory,” 2021). It seems, then, that the School of Nursing has not yet met its goal to “Recruit diverse nursing faculty” (Strategic Plan 2016 to 2021, 2017).

With these numbers in mind, it is not surprising that Stony Brook University is lagging behind when it comes to incorporating SGBM into healthcare training. The key “trigger person” suggested by Verdonk’s 2005 study is hardly present, which may be why the Midwifery Program is the most progressive program within the School of Nursing (Participant 2, 2021). Verdonk also notes that personal experiences are significant contributors to SGBM’s successful incorporation into medical education (2005). Therefore, because the School of Medicine’s OB-GYN department has two white men occupying its highest leadership positions, and because the School of Nursing only has one woman of color in a leadership position, gender-inclusive training may be extremely difficult to accomplish with the existing faculty structure.

Conclusion

In summary, when the participants, the majority of whom were initially medically trained in the late 1990s to early 2000s, were students, they did not receive any education about SGBM with the exception of purely medicalized topics. Today, Stony Brook medical and nursing students are taught more gender-inclusive curricula but not as much as faculty nor students would like. Participants expressed facing challenges such as finding time to create new content, lacking personal knowledge and familiarity with SGBM, and lack of institutional support in the form of formal, specific training opportunities. Overall, Stony Brook’s “progressive” practices and curricula continue to use a heteronormative lens and show no intentions of trying to dismantle it.

This case study provides a snapshot of the American medical system, which currently faces discrimination and disparities on both clinical and educational fronts. With more Americans openly identifying as LGBTQ* than ever (Jones, 2021), and with populations of color continuing to grow (Jones et al., 2021), addressing gender- and sexuality-based healthcare disparities is an essential piece to improving the health of the nation. If the COVID-19 pandemic has shown us anything, it’s that we are in a deep crisis, and we have been for decades, leaving marginalized groups with inexcusably inequitable care. One of the most effective ways to produce long-term, sustainable change is by educating future generations of providers. This is why it is so important to ensure our healthcare students are receiving, at bare minimum, adequate training on these topics.

Potential ways to improve SGBM education and ensure competency is 1) provide formal, structured training for educators; 2) incorporate SGBM into the didactic and clinical curricula using updated lectures, new case studies, more diverse patient populations, and inclusive simulations; 3) appoint more (qualified) individuals from marginalized groups to leadership positions; 4) allot more funding to gender- and sexuality-inclusive educational initiatives; and 5) continuously assess, collect feedback, and adjust accordingly.

To form a more robust understanding of the medical educators’ attitudes towards SGBM education, future research could involve more individual case studies of academic medical institutions and/or comparing multiple universities. Faculty and student demographics differ between schools and geographic regions, which may affect attitudes as well as financial and socio-political ability to incorporate SGBM into formal medical education.


Footnotes

1 Essentialists believe that certain groups (categorized by race and sex especially) have traits and behaviors that are determined by biological factors. Gender essentialism inherently supports gender inequality by viewing gender as a binary concept, i.e. man versus woman (Hepburn).

2 HEI LGBTQ scores were calculated based on four major criteria: 1) quality LGBTQ patient-centered care, 2) “Patient Services and Support,” 3) “Employee Benefits and Policies” including “transgender inclusive healthcare benefits,” and 4) Patient and Community Engagement” (Healthcare Inequality Index 2020 14).

3 “A grand round is a formal meeting at which physicians discuss the clinical case of one or more patients. Grand rounds originated as part of residency training wherein new information was taught and clinical reasoning skills were enhanced. Grand rounds today are an integral component of medical education” (Stöppler, 2021).

4 A referral is when a healthcare provider does not have sufficient expertise in a particular field and suggests that the patient see a more knowledgeable specialist in that field (“Referral,” 2021).

5 Here, I use the term “queer” to mean “not aligning with the norm” rather than the more conventional “non-heterosexual” meaning.


Acknowledgements & Disclosures

Thank you to Liz Montegary for providing guidance for my research process, and thank you to all faculty who interviewed with me. This research was not funded in any way by any institution and was a fully independent project.


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Physician Insecurity and Patient Expectations Drive Medical Excess

by Ean Tam, December 8, 2021

In 2008, a seven-year-old boy complained that his stomach was in such pain that he could not sleep. The boy’s parents took him to see his pediatrician. In due time, the boy found himself in a hospital in Long Island. He was missing an entire school day, which would have otherwise been a happy occasion if it were not for the IV in his arm and the impending endoscopy—a procedure in which a small camera is inserted down his esophagus and into the stomach to check for gastrointestinal issues. The doctors could not find any explanation for the stomach pain. 

Eventually, the boy’s parents brought him to a specialist in Manhattan, who did his own tests. When all the tests seemed to be futile, the specialist asked if lactose intolerance had been considered as a possible cause. After a few days of avoiding milk, the boy’s stomach pain went away. In the end, he had no gastrointestinal issues, no infections, no serious complications; he simply could not digest dairy. Silly, right? I know. The boy was me.

Lactose intolerance is not only very common, but it also runs in my family. All my signs and symptoms indicated lactose intolerance. The evidence was there. As the saying goes, “When you hear hoof beats, think horses, not zebras.” It should not have taken three doctors and a camera down my throat to reach the proper diagnosis. So why did it?

Did my parents’ urgency for their child create a dramatic flare for the doctors? Was there a desire to take action so quickly and intensely? Maybe the doctors thought a simple answer was not satisfactory enough for my concerned parents? Maybe the multiple lab tests and procedures done on me were just the doctors’ gesture that they were trying their hardest to get an answer, no matter how convoluted and unnecessary the gesture. While this may seem ridiculous that a doctor would  offer excessive medical services just to make patients happy, it is not unheard of. In fact, it is quite common. To the detriment of the medical profession, the interpersonal dynamics of the clinic can become tangled with a physician’s fear of lawsuits.

The Power of Patient Expectations

“[W]e overprescribe antibiotics, but my own view is that I don’t really care… your goals at the end of the conversation is for both you and the mother and the baby to be satisfied.”

Anonymous doctor 
(qtd. in Butler et al. 639)

Some doctors find symbolism in providing medical services they know are unnecessary. The doctors see their actions as doing everything they can for their patient (Rowe et al. 5). To them, the issue of overtesting and overprescribing their patients can be overlooked. Doctors have even reported that if their patient left an appointment without some kind of prescription, the doctors felt as if they had not done their job (Butler et al. 639). 

More often than not, patient expectations for their medical care are communicated to doctors implicitly rather than explicitly (Stivers 1127). Since patients are not always making their wishes clear, doctors decide to follow their gut instinct on what they believe their patients want. University of Newcastle researchers Jill Cockburn and Sabrina Pit found that if a doctor perceived their patient to be expecting medications, then the patient was ten times more likely to get a prescription (Cockburn and Pit 521). 

Now, one may say, ‘Maybe the doctor is correct. Maybe the doctor is just really perceptive, and they can tell what the patient wants without the patient saying it.’ Unfortunately, doctors are frequently wrong on this occasion. A study published in Patient Education Counseling observed that when doctors predicted a patient’s expectation for medication, the doctors were correct only 53% of the time (Jenkins et al. 276). Medications can have harmful side effects and high costs. Lab tests also bear negative consequences, especially if the tests involve radiation or high risks of false-positives. Medical services should not be given on gut instinct just to make patients happy.

However, the demand to meet patient expectations is both compelling and draining for doctors. In the short term, doctors may receive some relief in believing their patient walked away feeling fulfilled, but in the long term, the reality of not complying with standards of their medical training may kick in. In interviews with Dr. Theresa Rowe et al. of Northwestern University, doctors spoke about prescribing unnecessary antibiotics because they felt the patients desired them. One doctor remarked, “You spend 15 minutes trying to educate [patients], when they will go out disillusioned, come back the next day and see someone else, making you feel 5 minutes would be better spent just giving them a prescription and getting rid of them.” Another doctor admitted, “I do feel as though I’ve been slightly used. Sometimes slightly abused as well” (639). 

When doctors put an emphasis on patient expectations, they lose the motivation to limit medical excess, preferring to cater to customer satisfaction. Ironically, the physician makes the medical profession more mentally taxing for themselves. Now, they must walk a fine line between customer service and patient wellness. And to keep customers coming back for business, sometimes it pays to think of zebras, not horses.

Looking for Liability

“Malpractice attorneys like to say they save more lives than physicians.”

Eric Katz, MD, MBA (329)

When we think of the healthcare we receive, we hope physicians run their medical practice faithfully, not defensively. However, an unfortunate reality is that the threat of malpractice lawsuits and mentalities such as “more is better” have made doctors weary of acting according to their medical training. Doctors would prefer to safeguard themselves with defensive medicine, ordering multiple tests or procedures that do not always make the patient feel better, but will definitely make the doctor feel better. Doctors can use tests or prescriptions as evidence that they did their job correctly and were extensive in their examination of a patient. 

At times, some of these numerous tests may alert doctors to a hidden, life-threatening illness. If we think in terms of “more is better” or “earlier is better,” then maybe the cost of defensive medicine is acceptable. However, if we prioritize the moral integrity of the medical profession, then we should not accept that some doctors direct our medical care by threat of lawsuit. Then our treatment plans are not designed exclusively for patients. Rather, doctors will begin to merge the clinic with the court, and legal opinion with patient outcome. As Johan Bester, director of bioethics at the University of Nevada Las Vegas, writes, “[Defensive medicine] represents an egregious breach of professionalism and of ethical obligations to the patient and to society” (418-419).

We should hold doctors liable for their mistakes, but we should be mindful of where the threat of liability is steering doctors’ decisions. Current trajectory suggests more defensive medicine. It would be ironic if the tool we use to hold doctors responsible for isolated incidents encourages doctors to have an irresponsible approach to treating every patient.

Conclusion

If we would like to have patient-oriented medicine, we should consider the realities in which doctors exist today. There is no magical wand to stop doctors from engaging in defensive medicine. This is more than just a patient-doctor issue. It is one that affects our economy and healthcare system: from longer wait times to more expensive medical bills. Bill Clinton said he wanted to get rid of defensive medicine in 1992. So did George Bush in 2004. And Barack Obama in 2009.

But there are realistic steps that we can take to clarify the line between patient and customer. We should be more upfront with our doctors: let them know what we expect, what our presumptions are, and what we would like done. We should not be worried about sounding stupid or wasting the doctor’s time with questions. Doctors undergo many years of medical training to give you an answer. So ask away and be frank. We cannot risk our doctors making an inaccurate assumption of our needs and then treating us accordingly. Not all of us are doctors, but all of us at some point will be patients. We do not need to be over-tested nor overprescribed. We should take up our side of the effort to prevent medical excess and preserve our doctors’ attention to us.


Works Cited

Bester, Johan C. “Defensive Practice is Indefensible: How Defensive Medicine Runs Counter to the Ethical and Professional Obligations of Clinicians.” Medicine, Health Care and Philosophy, vol. 23, no. 3, 2020, pp. 413-420.

Butler, Christopher C., et al. “Understanding the Culture of Prescribing: Qualitative Study of General Practitioners’ and Patients’ Perceptions of Antibiotics for Sore Throats.” BMJ, vol. 317, 1998, pp. 637-642.

Cockburn, Jill and Sabrina Pit. “Prescribing Behaviour in Clinical Practice: Patients’ Expectations and Doctors’ Perceptions of Patients’ Expectations—a Questionnaire Study.” BMJ, vol. 315, no. 7107, 1997, pp. 520-523.

Jenkins, Linda, et al. “Developing and Using Quantitative Instruments for Measuring Doctor–Patient Communication About Drugs.” Patient Education Counseling, vol. 50, no. 3, 2003, pp. 273-278.

Katz, Eric D. “Defensive Medicine: A Case and Review of Its Status and Possible Solutions.” Clinical Practice and Cases in Emergency Medicine, vol. 3, no. 4, 2019, pp. 329-332.

Rowe, Tiffany A., et al. “Examining Primary Care Physician Rationale for Not Following Geriatric Choosing Wisely Recommendations.” BMC Family Practice, vol. 22, no. 95, 2021, pp. 1-6.

Stivers, Tanya. “Participating in Decisions about Treatment: Overt Parent Pressure for Antibiotic Medication in Pediatric Encounters.” Social Science & Medicine, vol. 54, no. 7, 2002, pp. 1111-1130.

Today’s Crisis Standards of Care: A Death Knell for the Less-Abled

by Vignesh Subramanian, December 3, 2021

As of November 2021, nine U.S. states – Alaska, Idaho, Montana, Washington, Colorado, Wyoming, New Mexico, Utah and Arizona – have either officially activated statewide crisis standards of care or have been on the brink of declaring their activation. The news comes as several more states, including the southern bloc of Georgia, Kentucky, Mississippi, Arkansas, and Texas, have warned that I.C.U.s are rapidly approaching capacity (Knowles). Amid waves of largely unvaccinated COVID-19 patients besieging weary hospitals, authorities have attempted to ease this burden by hastily formulating policies that will decide the relative value of human life during public health crises for decades to come. But what does all of this mean?

Crisis standards of care institute substantial changes to the delivery of healthcare services amid pervasive or catastrophic disasters, with the understanding that standard levels or quality of care can no longer be wholly provided to patient populations. In the United States, activation of these standards is formally declared by state governments and directly alters the evaluation criteria on which decisions about triage, transfers, and use of scarce resources are made. The criteria are far-reaching but vary immensely; some incorporate ‘inclusion criteria’– encouraging treatment of patients in good standing following assessments of their major organ health, life expectancy, and the order of the first-come/first-serve basis — while others also incorporate ‘exclusion criteria’– rejecting critical care for patients with low likelihood of immediate survival or poor ‘quality of life,’ or those patients for whom it is assumed that increased sustenance will not substantially provide significant benefit (Auriemma). 

Physicians’ use of this last-resort discretion can be frightening; beyond the more expected measures of postponed elective, cosmetic, and nonurgent surgeries and longer wait times in general, patients are often subject to crucial decisions made on mere whims. Physicians can send patients home to rely on inadequate in-home medical equipment, transfer them to hospice care or other centers without the appropriate specialized facilities, and even remove them from life support entirely, all over their objections. Universal ‘do-not-resuscitate’ and ‘do-not-intubate’ orders are applied as blanket protocols to all patients in cardiac or respiratory arrest if insufficient staff are available, even without consideration of patient statuses on a case-by-case basis. Ventilators are given to those who are most likely to restore their normal breathing function, nearly defeating the purpose of the devices; ambulances are not guaranteed upon emergency calls; and patients may even be denied admittance into a hospital to begin with (Chin and Harris). As the systemic capacity to treat large patient volumes shrinks, so too does sympathy for those whose lives are simply deemed worth less.

Do not resuscitate (DNR) orderA written order from a physician, issued at a patient’s request, instructing healthcare providers not to perform any form of cardiopulmonary resuscitation (CPR) – including chest compressions, cardiac drugs, or placement of a breathing tube – on the patient should respiratory or cardiac arrest occur.

(Breu and Herzig)

Do not intubate (DNI) order A written order from a physician, issued at a patient’s request, instructing healthcare providers not to place a breathing tube to assist the patient’s breathing should respiratory or cardiac arrest occur. Unlike a DNR, a DNI still allows providers to administer chest compressions and cardiac drugs as necessary.

(Breu and Herzig)

It is therefore not surprising that crisis standards of care amount to a death knell for the less-abled. Already, reports are being made of elderly patients and those with disabilities receiving subjective evaluations of their ‘quality of life’ from their physicians in violation of civil right statutes, being denied care at hospitals without resource shortages due to mere anticipation of capacity being reached, and being pressured — especially in the cases of patients with intellectual disabilities, and in the absence of caregivers — to sign off on advance directives they do not understand. Despite their relative inability to accurately predict the long-term survival probability of patients with disabilities, or whether or not such patients will require use of greater treatment resources, many doctors and lawmakers continue to place ableist judgement above sound scientific knowledge. Of the twenty-nine U.S. states that issued crisis standards of care guidelines before or at the start of the COVID-19 pandemic, the vast majority did not include language prohibiting discrimination against elderly or disabled patients in the provision of critical care, and few used their administrative processes to close such loopholes. Some state plans actually explicitly prioritize younger patients and those without comorbidities, while others prohibit people with specific disabilities from being offered life-sustaining ventilation support or throw discretion to hospital policy (Cleveland Manchanda). Such fragmentation of standards forces the current array of disability rights groups engaged in litigation against these hospitals to base their petitions on tort law claims rather than righteous grounds of disability discrimination, leaving patients at the mercy of an indifferent medical bureaucracy.

Ableist The quality of being prejudiced or discriminatory against individuals with disabilities.

(Neilson)

It is inexcusable that demonstrably false stereotypes about the ‘quality of life’ experienced by a patient with disabilities or old age are allowed to dictate the quality of care they receive. While the U.S. has made tangible progress towards extricating such biases from medical practice — one could certainly point to the Americans with Disabilities Act, Title VI of the 1964 Civil Rights Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act (DOJ, HHS) as prominent examples — those gains have evidently not been fully incorporated into the healthcare pathway. Even during a public health crisis, acute episodes of illness must not determine the relative value of a patient’s life simply because providers are under duress. Instead, moments such as these call for the best of physicians’ work ethic and equity in screening criteria and treatment allocation decisions.


Works Cited

“A Guide to Disability Rights Laws.” Civil Rights Division, U.S. Department of Justice (DOJ), Feb. 2020, https://www.ada.gov/cguide.htm#anchor64984.

Auriemma, Catherine L., et al. “Eliminating Categorical Exclusion Criteria in Crisis Standards of Care Frameworks.” American Journal of Bioethics, 18 May 2020, https://www.tandfonline.com/doi/full/10.1080/15265161.2020.1764141.

Breu, Anthony C., and Shoshana J. Herzig. “Differentiating DNI from DNR: Combating Code Status Conflation.” Journal of Hospital Medicine, Oct. 2014, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5240781/.

Chin, Natalie M., and Jasmine Harris. “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients.” Center for Public Representation, UC Davis School of Law, Feb. 2021, https://www.centerforpublicrep.org/wp-content/uploads/FINAL-Intersectional-Guide-Crisis-Care-PDF.pdf.

Cleveland Manchanda, Emily C., et al. “Crisis Standards of Care in the USA: A Systematic Review and Implications for Equity amidst COVID-19.” Journal of Racial and Ethnic Health Disparities, Aug. 2021, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7425256/.

Knowles, Hannah. “Hospitals Overwhelmed by Covid Are Turning to ‘Crisis Standards of Care.’ What Does That Mean?” The Washington Post, 23 Sept. 2021, https://www.washingtonpost.com/health/2021/09/22/crisis-standards-of-care/.

Neilson, Shane. “Ableism in the Medical Profession.” Canadian Medical Association Journal, Joule Inc., 14 Apr. 2020, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7162445/.

“Section 1557 of the Patient Protection and Affordable Care Act.” Office for Civil Rights, U.S. Department of Health and Human Services (HHS), 27 Oct. 2021, https://www.hhs.gov/civil-rights/for-individuals/section-1557/index.html.

Racial and Gendered Stratification of The Reproductive Justice Movement

by Zarya Shaikh, November 3, 2021

The birth control movement, infertility treatments, and abortion rights campaign deliver liberation to all who benefit from them. Black, Indigenous, and people of color (BIPOC) folx are not the intended benefactors of these initiatives. BIPOC individuals, particularly those with lower socioeconomic status in comparison with their white counterparts, are hindered from reaping the benefits of the reproductive justice movement. This is a reflection on “a select group of college-educated, middle and upper-class, married white women” using BIPOC people as a stepping stone towards achieving freedom and privileges in their own lives (Bell, 1984, pg. 1). White women exclude BIPOC folx on the basis that they do not share the same “class, race, religion, sexual preference” (Bell, 1984, pg. 5). This phenomenon occurs on a global scale, stifling the growth and success of BIPOC populations across the world. It is for this reason that the absence of BIPOC folx in these movements is a powerful act of resistance that stands in opposition to BIPOC-life-threatening governmental policies on a day-to-day basis. On a cursory glance, birth control and abortion rights may not seem tied to infertility. However, involuntary infertility and abortion on an institutional level have proved to be a discriminatory implementation of birth control designed to limit populations of BIPOC people. To understand how birth control has been used as a limiting agent, one must first understand the prevalence of infertility. Infertility exists with significant global incidence—“some portion of every human population is affected by the inability to conceive during their reproductive lives” (Inhorn, 2002). It is a genderless occurrence by nature. So why do countries explicitly blame women for infertility when statistically men are predominantly infertile? This is a problem that starts not at the time of testing for pregnancy but when trying for pregnancy. In author Carole S. Vance’s chapter “Social Construction Theory,” Vance discusses the archaic notion of “women’s innate sexual passivity” (Grewal and Kaplan, 2006, pg. 31). Women are thought to be submissive and not have any libido until a man awakens a preconceived, insatiable hunger. Sex is painted as a desire that women yearn for, which can only be fulfilled by men. This association between sexual acts and identities perpetuates harmful stereotypes that can incur real-world consequences as seen by the onus falling on women time and time again for not being able to conceive.

In reality, there are several influencing factors, including reproductive tract infections, that can lead to tubal infertility, postpartum complications, post-abortive complications, dietary or environmental toxins, and more. To counter infertility, whether tubal infertility and/or male infertility, new reproductive technologies (NRTs) have been used. They are expensive and, therefore, accessible only by people who can afford them. NRTs elude people with lower socioeconomic status because in vitro fertilization (IVF) services like this are generally offered by a private sector accessible by “elites” (Inhorn, 2002). Options that are available to people who cannot afford IVF turn to formal healthcare alternatives. Those alternatives neglect the physical and mental wellbeing of the individuals they are used on. Tracey Loughran and Gayle Davis, who authored The Palgrave handbook of infertility in history: Approaches, contexts and perspectives, attribute the monopoly of reproductive technologies to the Global North and Global South. These two compete for treatment and “popular, legal, and medical approaches to infertility” (Loughran and Davis, 2017, pg. 397). There is a damning association between status and power in the form of race, gender, and socioeconomic privilege. The feminists of Global North, comprising of developed countries, advocate “for women’s rights to reproductive choice and control . . . [and] that discourse . . . was ill-adapted to the needs of women in other parts of the world” (Loughran and Davis, 2017, pg. 388). The common trend that a select few continue to speak for the collective masses remains true in this case. In the Global South, feminists who work towards accessibility of infertility treatments have been met with pushback from authorities and institutions. Even if there is a recognition of the need for ethical, or at least humane, alternatives to abusive sterilization and birth control, the institutions and authorities in developing countries have made it difficult to find a good support base. While the efforts of these outspoken feminists towards advancements in technologies have been promoted in advertisements as self-empowerment, other feminists condemn the science behind the scenes as unethical and exploitative of women’s bodies.

The histories of birth control, infertility treatments, and abortion movements are fraught with the exploitation and oppression of BIPOC women. In Women, Race and Class, feminist Angela Davis addresses the absence of BIPOC representation in the birth control movement and abortion rights campaign specifically. Davis attributes the apprehension of Black individuals to the underlying danger of the birth control movement—“involuntary sterilization” (Davis, 1982, pg. 354). There is an abhorrent history of abortion among slaves accompanied by limited resources and access to birth control. Starting at the time of slavery and continuing today, the social stratification of feminists is prominent, especially when discussing the rationale for limiting or expanding family size. For instance, lower-income families are expected to restrict their family capacity to accommodate the taxation and superiority complexes of middle-class and rich families. Eugenic, racist and capitalistic views have clouded the “progressive potential of the birth control campaign” (Davis, 1982, pg. 360). In the 20th century, the American Birth Control League dominated the conversation by calling on Black people to pursue birth control as though it were compulsory sterilization. Davis notes, “What was demanded as a ‘right’ for the privileged came to be interpreted as a ‘duty’ for the poor” (Davis, 1982, pg. 358). Years later, we are still seeing the same control enforced through the popular meme: “What’s classy if you’re rich but trashy if you’re poor?” Davis exposes this call as a disillusioned choice that culminates in the forced sterilization of “Native American, Chicana’ Puerto Rican and Black women . . . in disproportionate numbers” (Davis, 1982, pg. 360). One initiative, started under the leadership of President Theodore Roosevelt, forced sterilization of over 35% of all Puerto Rican women. This action was enacted as a means to address the economic problems of Puerto Rico by reducing the birth rate to be less than or equal to the death rate (Davis, 1982, pg. 363). In reality, this surgical sterilization was devastating. It was promoted as an incentive to limit unemployment rates. However, Davis states this is not the case: “The increasing incidence of sterilization has kept pace with the high rates of unemployment” (Davis, 1982, pg. 363). This act of misdirection to harm BIPOC populations is not a new issue.

Daniel J.R. Grey’s ‘She Gets the Taunts and Bears the Blame’: Infertility in Contemporary India presents a timeline of “the relatively abrupt transition from views of assisted reproductive technologies (ARTs) as morally and medically dubious to their widespread acceptance” (Grey, 2017, pg. 242). Grey discusses the myriad of issues characterizing the population control measures established in India. He highlights the (lack of) morality involved in forcing sterilizations upon women and girls who do not consent with the full understanding that these procedures will bar them from having biological offspring. Fallacies embedded in the Indian government’s five-year plans to achieve a reduction in birth rates resulted in direct and indirect fatalities of surrogates, parents, and children involved. Surrogacy as an alternative to infertility is plastered as a “‘mutual benefit’ to both infertile couples (whether foreign or domestic) and to impoverished Indian women” but is not a realistic expectation (Grey, 2017, pg. 246). These examples epitomize failures of the system to foresee and adapt to changes that may not be politically favorable for the government.

For these reasons, it is important to expose forced sterilizations and provide BIPOC folx with the support they need to safely access birth control and abortion procedures without a double entendre facade. One such organization is the National Latina Institute for Reproductive Health which distributes its reproductive health resources to Latine/xs. To make medical decisions, one must have information available to them in an accessible format. Reproductive justice must be for the people it serves just as disability justice advocates for a system that prioritizes disabled peoples and their needs. Piepzna-Samarasinha, a queer disabled femme writer, dreams of disability justice as it relates to the concept of care work. Care work is a practice in which BIPOC individuals also benefit from the work being done behind the scenes and can take care of themselves. Disability justice by itself was created as a counter to white disabled folx who did not recognize or elevate BIPOC activists. White people cannot and should not be at the forefront of conversations intended to prioritize BIPOC peoples. BIPOC and marginalized folx should be able to tell their story and access resources as dictated by what they deem necessary instead of having them dictated by an outsider. 

The Black Mamas Matter Alliance is one organization that approaches reproductive justice by seeking to change policy. They call for Black women-led initiatives and address legislation that leads to poor maternal health outcomes. Alternative modes of resistance can be adjusting literature in academic courses to include BIPOC-perspectives. If not for my Women’s Gender, and Sexuality major, I would not have learned about eugenics. It has not come up in any of the classes I have taken for my Biochemistry major. It is simply not a conversation unless one seeks it out. Universities like our own can be allies to the cause by giving a platform to BIPOC advocates, especially in biology courses that discuss reproduction.


References

Davis, A. (1982). Racism, birth control and reproductive rights. In Angela Davis, Women, Race and Class (pp. 202–271). Lond: The Women’s Press; New York; Random House, Inc. 

Davis, G., & Loughran, T. (2017). The Palgrave handbook of infertility in history: Approaches, contexts and perspectives. Palgrave Macmillan. 

Grewal, I., & Kaplan, C. (2006). An introduction to women’s studies: Gender in a Transnational World. McGraw-Hill Higher Education. 

Grey, D. (2017). ‘She gets the taunts and bears the blame’: Infertility in contemporary 

India. The Palgrave handbook of infertility in history, Approaches, contexts and perspectives. Palgrave Macmillan. Retrieved from 

https://link.springer.com/chapter/10.1057%2F978-1-137-52080-7_13

Hooks, B. (1984). Black women: Shaping feminist theory. In bell hooks, Feminist theory: From margin to center (pp. 1–17). Brooklyn, New York: South End Press.

Inhorn, M.C. (2003). Global infertility and the globalization of new reproductive technologies: Illustrations from Egypt. Social Science & Medicine, 56(9), pp. 1837–1851. https://doi.org/10.1016/S0277-9536(02)00208-3

The Medicalization of Birth in the United States of America

by Pavithra Venkataraman, March 20, 2021

“The United States provides the world’s most expensive maternity care but has worse pregnancy outcomes than almost every other industrialized country”

(Feldhusen, 2000).

When analyzing the differences between how America approaches birth, and how other developed countries approach birth, there is one that stands out: medicalization. Medicalization is a process by which human problems come to be defined and treated as medical problems. It consists of acts such as using medical language to describe a problem, adopting a medical framework to understand a problem or using a medical intervention to treat it (“The Medicalization of Childbirth,” 2016). The transition from home to hospital has brought with it opportunities that have created an increasing number of negative outcomes. These can easily be attributed to the industrialization of childbirth into hospitals. Demystifying and advertising the much more beneficial and safe option of midwifery would greatly increase and make more comfortable pregnancy outcomes across our country.

A Brief History of Birth in the United States

The birthing process has changed dramatically through the centuries. To properly identify the time periods where change occurred, scholars often split this transition from home to hospital into three stages. The first stage, social childbirth, was extremely community oriented, “laboring and delivering with the assistance of female family, neighbors, and midwives” (Martucci, 2017). This stage lasted from the early 17th century to the mid 18th century. Birth was a female occurrence; men were not involved unless there was an emergency situation. During this stage, the only birthing style that was practiced was a ‘normal’ birth, defined as “a vaginal birth in which labor starts spontaneously [and] labor progresses without assistance or specific drugs and forceps [are] not used” (“The Medicalization of Childbirth,” 2016). In effect, there are no drugs that are used to induce, ease, or speed up the process; the woman’s body does the work and that is all. Midwives were the only resource that women had if they wanted assistance. 

This natural birthing process was interrupted by the invention and introduction of several medical apparatuses, especially the obstetrical forceps. Tong-like instruments, these were used to assist in delivery as opposed to either cesarean sections or other less-safe and more damaging devices. With this invention, university-educated doctors flooded the birthing process. During this transitional period, from the middle of the 18th century into the 19th century, there was an equal mix of hospital and home births, and therefore an equal mix of doctors and midwives being used. The rise of the forceps created a necessity for obstetrical education, to teach physicians the proper way to use them. 

In addition to the forceps, reports published in 1910 and 1912 stated that the practicing American obstetricians at the time did not have the proper training: “To improve obstetrics training, one report recommended hospitalization for all deliveries and the gradual abolition of midwifery. Rather than consult with midwives, the report argued, poor women should attend charity hospitals, which would serve as sites for training doctors” (Rooks, 2012). An important addition to the hospitalization process, the ‘twilight sleep,’ was created in 1914. Considered a sign of progress at the time, this process used a mix of several drugs and an amnesiac, scopolamine, to induce a long sleep that also took away any memories of giving birth. During this period of time, the natural child birthing process was criticized by scholars and doctors who wanted childbirth to be seen as a ‘destructive pathology’ in order to encourage medical intervention. Consequently, the medical focus of birth shifted from “responding to problems as they arose to preventing problems through routine use of interventions to control the course of labor” (Rooks, 2012). With this shift, instead of only using medical interventions in cases that had immediate and pressing problems, these interventions were used in every single case of pregnancy, whether or not there was an issue naturally.

This leads to the third stage of birth: medical authority. In the present day, around 99% of births happen in hospitals, with the process of pregnancy now beginning with doctors of gynecology. In this stage, the cesarean section rate is close to 30%, both elective and emergent, even though the ideal rate according to the World Health Organization is 15% or less (“The Medicalization of Birth”). Specifically, celebrities are electing to participate in a procedure called designer birth, according to the film The Business of Being Born (2008). This procedure involved a scheduled c-section delivery followed immediately by a procedure that involves the removal of excess fat and skin, better known as a tummy tuck. Other assisted delivery procedures include an episiotomy, “a surgical incision made in the perineum… to allow the baby’s head to pass through more easily; an amniotomy, “an artificial rupture of the amniotic membranes, which contains the fluid surrounding the baby… to induce or augment labor;” induction of labor through “Pitocin, a synthetic form of the drug oxytocin given intravenously;” and vacuum extraction, which uses a pump that pulls the baby ‘down the birth canal with the help of the instrument and with the help of the mother’s contraction” (“Pregnancy: Types of Delivery,” 2018). Each one of these procedures were created with the aim of helping the pregnant person and the baby and yet has large risk factors associated with the outcomes.

From Home to Hospital

In theory, it seems that it must be a good thing to have medical research and professionals improve and create new processes to help ease the birthing process. I argue that because of the following societal systems we have in place, medicalization no longer prioritizes the pregnant individual and child, instead favoring the hospitals and medical organizations that profit from them. It would be wrong to assume that all these procedures have improved birthing outcomes. In actuality, “a scholar who conducted an intensive study concluded that the 41 percent increase in infant mortality due to birth injuries between 1915 and 1929 was due to obstetrical interference in birth” (Rooks, 2012).  I believe there are two levels to the systems in place in the United States that have obstructed the improvement of birthing results. On the individual level, I believe that pregnant people and their bodies are no longer seen as such, even during individual interactions with doctors; rather, they are seen as commodities of flesh to be used and are treated that way. On a collective level, I believe the birthing process as a whole was seen as a business opportunity and therefore has been industrialized for the purpose of making the most profits. 

On its own, the birthing process began as an experience tailored to the needs of the pregnant person, based on the preferences of the family, and structured around the environment where the birth was happening. In the present day, the process in a hospital is unified, completely up to the discretion of doctors, and wholly dependent on what resources exist in that hospital. I compare this to the theory proposed by Hortense Spillers in Mama’s Baby, Papa’s Maybe: An American Grammar Book (1987), and expanded upon by Nirmala Erevelles in Disability as “Becoming”: Notes on the Political Economy of the Flesh (2011). Beginning from Spillers’ recognition of black bodies during the Middle Passage being treated as commodities of flesh, as opposed to bodies with purpose, Erevelles takes it one step further by conceptualizing ‘disabled’ bodies as similarly being viewed as ‘wounded’ flesh without considering the bodily aspects of mind and soul that also contribute to a body’s worth. It is easy to picture this occurring within the process of birthing: pregnant individuals are seen as vulnerable and weak, and at the very minimum, during the period when the birth is happening, they are only flesh that needs to be dealt with instead of bodies filled with emotions, preferences, and needs to be fulfilled outside of physical procedures. 

For example, a procedure known as ‘the husband stitch’ was brought to light first by Sheila Kitzinger in her 1994 book, The Year After Childbirth, and then through Carmen Maria Machado’s short story called “The Husband Stitch” (2014). This “refers to the procedure of suturing the vaginal entrance narrower than necessary to repair trauma post-birth, with the presumption that this will enhance the sexual pleasure of a penetrating penis” (Halton, 2018). The stitching happens after the occurrence of an episiotomy, which on its own has been increasingly advised as unnecessary and non-essential by many medical guidelines both in the US and the UK. Women who share their birth stories often report not being aware that an episiotomy had occurred until months after the birth when they were experiencing extreme pain and searched for the cause. They relay not being properly informed about the procedure or told how to help and deal with the healing process that is to come. As a newly public procedure, there are no studies that exist to explore how often, how many times, or how recently this stitch is and has been added. The process itself turns a woman into Spillers’ definition of flesh: women exist sexually for their husbands even though the pain of recovery is increased exponentially by both magnitude and length of time. These women exist as vehicles for reproduction and are placed at the complete mercy of their doctor with much less freedom to make their own choices especially while their legs are forcibly spread. 

When analyzing birth as a collective social institution, it is easy to see how industrialized the process has become. What was once a private experience is now a conveyor belt-style, in-and-out procedure where doctors and hospitals are praised and rewarded for their efficiency in terms of the number of births they can successfully complete in the least amount of time. I compare this to Lisa Lowe’s claim in her book titled The Intimacies of Four Continents. Lowe’s study of the effects of colonialism on the colonized lead her to claim that modern liberalism affirms the people in power “while subordinating [and erasing the history of] the variously colonized and dispossessed peoples whose material labor and resources were the conditions of possibility for that liberty” (Lowe, 2015, p. 6). Not only did settler colonialism remove and disadvantage Natives from their land, but the history books and archives ‘discourage’ these connections. Similarly, medical professionals capitalized on the birthing field, simultaneously discrediting midwives as untrained and incompetent and denying that this history of midwifery ever existed.

Not only does this industrialization disadvantage midwifery, but it equally, if not more so, disadvantages pregnant individuals. For example, the labor process has been streamlined to the point where the baby and pregnant person’s lives are put at danger over and over. Labor for a pregnant individual can naturally last anywhere from a single hour to 18-20 hours (“Pitocin,” n.d.). However, to hospital institutions, the more women they can care for in the least time possible, the more money they can make. Therefore, methods that speed up labor, no matter the cost or non-necessity, are introduced into the process: “Other wealthy, industrialized countries have national health services, in which elements of care that aren’t needed and don’t bring improved health tend to be dropped because of the cost. In the U.S. health-care industry, the more care that is provided, frequently more money is made by the doctors and the hospitals, so there is less incentive to not use these methods” (Rooks, 2012). One such method is the administration of the drug Pitocin, which mimics the natural hormone oxytocin by reducing the time between contractions, which in turn speeds up labor. This sounds like it would be favorable, but in reality, “Pitocin is the drug most commonly associated with preventable adverse events during childbirth” (“Pitocin,” n.d.). The most common negative outcome seen with Pitocin is hyperstimulation. In labor, contractions slow blood and oxygen flow in and out of the placenta to the baby, and the stages in between contractions allows the placenta to rest. When Pitocin is administered, the time between contractions is shortened which does not allow enough blood and oxygen to reach the placenta which creates a large risk, known as hyperstimulation, for the baby (“Pitocin,” n.d.). A common medicalized cycle of birth is as follows: (1) Pitocin is administered to speed up the labor, which creates pain and tension in the pregnant individual, which then leads to (2) heavy pain medication administered such as an epidural, which numbs the nervous system and therefore slows contractions and the time in between. 1 and 2 are repeated a couple of times, until the baby is in such distress that there is no option but to move to a c-section, which can be stressful and traumatic for both the baby and the pregnant person (“Pitocin,” n.d.). 

Not only are pregnant people forgotten during a process in which they should be the focus, there is a disproportionate negative effect towards pregnant individuals of minority, whether that be by race, sexuality, trans-status, disability, and/or socioeconomic status, to name a few:

“Black women are 4 times more likely than white women to die from complications of pregnancy. In fact, black women have a higher risk than white women for dying from every pregnancy-related cause, including hemorrhag, pregnancy-induced hypertension, and pulmonary embolism… [B]lack infants… die at twice the rate of white infants… Other ethnic minorities also have higher infant mortality rates.”

(Anachebe & Sutton, 2003)

Women with pre-existing health conditions unrelated to pregnancy such as asthma, diabetes, depression, or substance use issues are already at a higher risk of negative outcomes. While there are few studies that focus on outcomes of trans individuals who have given birth, a simple search yields testimony after testimony of these individuals who have faced discrimination and intrusive questioning that fall outside of the realm of birthing, as well as the sense that the care being provided is not as thorough. Socioeconomic status and the outcomes that occur can be explained by locational, geographical, and monetary access to hospitals and quality of care. When the only known option is a hospital birth, the nearest hospital is miles and miles away, and insurance does not cover the cost of giving birth in a well-ranked hospital, the outcome will generally not be as positive. 

Conclusion

I believe that these numerous negative outcomes and societal manifestations are a result of the medicalization process. To counteract these issues, we should return to the midwife-assisted, non-hospital-dependent birthing process that the majority of developed countries around the world still use. This transition would be a return to an age where birthing worked while still keeping the option of modern medicine in the extreme cases where the body is not functioning in the normal way. Midwife-assisted births would reduce the number of drugs administered, the number of c-sections performed, and cases of the ‘husband stitch.’ The focus would return to the individual giving birth, restoring continuity of care, tailor-made birthing timelines, and the ability and authority of the family to make their own health care decisions. Midwifery allows the pregnant people to choose which individual they would most like to work with during the pregnancy process based on comfort, particular skill set, and even cost associated. Although this system is not perfect, it greatly reduces risks attached and increases the likelihood that outcomes will be negative, allowing the birthing process to function on its own the way it is supposed to.  

It is clear that there is an issue with our birthing system when we compare our outcomes to those of other developed countries. My argument lies in the way in which we, as a country, are choosing to fix it. Instead of compounding the issue by introducing medical solutions to fix medically-induced problems, I propose that we relinquish our need to keep the birthing process entrenched in the institution of hospitals. I believe a return to the way that the birthing process used to work will return us to outcomes that are much less negative and much less divisive along minority lines. Although medicine is important, its purpose, in simple terms, is to treat diseases that are not, for lack of a better word, ‘normal’ to a human body. The inclusion of pregnancy and birth, extremely ‘normal’ and necessary human bodily functions, into this category of medicine is not only unnecessary, but in practice detrimental to both pregnant individuals and the babies. I believe that midwifery is the right way to progress, and the best way to go about improving the birthing process in America.


References

Anachebe, N.F., & Sutton, M.Y. (2003). Racial disparities in reproductive health outcomes. American Journal of Obstetrics and Gynecology, 188(4), S37–S42. https://doi.org/10.1067/mob.2003.245

Erevelles, N. (2011). Disability and difference in global contexts: Enabling a transformative body politic. Palgrave Macmillan US.

Feldhusen, A.E. (2000). The history of midwifery and childbirth in America: A time line. Midwifery Today. https://midwiferytoday.com/web-article/history-midwifery-childbirth-america-time-line/

Halton, M. (2018, April 26). The ‘husband stitch’ leaves women in pain and without answers. Vice. https://www.vice.com/en_us/article/pax95m/the-husband-stitch-real-stories-episiotomy

Lowe, L. (2015). The intimacies of four continents. Duke University Press.

Martucci, J. (2017). Childbirth and breastfeeding in 20th-century America. Oxford Research Encyclopedia of American History, https://doi.org/10.1093/acrefore/9780199329175.013.428 

The medicalization of childbirth. (2016, December 10). In UBC Wikipedia. https://wiki.ubc.ca/The_Medicalization_of_Childbirth

Pitocin (Oxytocin) induction risks and side effects. (n.d.). American Baby & Child Law Centers. Retrieved March 7, 2021, from https://www.abclawcenters.com/practice-areas/prenatal-birth-injuries/labor-and-delivery-medication-errors/pitocin-and-oxytocin/

Pregnancy: Types of delivery. (2018, January 1). Cleveland Clinic. Retrieved March 7, 2021, from https://my.clevelandclinic.org/health/articles/9675-pregnancy-types-of-delivery

Rooks, J.P. (2012, May 30). The history of midwifery. Our Bodies Ourselves. https://www.ourbodiesourselves.org/book-excerpts/health-article/history-of-midwifery/

Spillers, H.J. (1987). Mama’s baby, Papa’s maybe: An American grammar book. Diacritics, 17(2), 65–81. https://doi.org/10.2307/464747

Saving for a Home Birth: How COVID-19 Will Change Fertility in the United States

by Sophia Garbarino, February 25, 2021

The novel coronavirus pandemic has significantly changed life in the United States, both temporarily and probably permanently in many ways. Not only has it impacted or directly caused the death of over 200,000 Americans, but it also rapidly changed the social norms of relationships and birth (CDC). Quarantining, social distancing, and working from home are all essential to the new normal American life. COVID-19 and the policies it has produced will ultimately accelerate the U.S. population decline by delaying marriage while pushing more parents away from medicalized births and into the comfort of their own homes.

Financially, the pandemic will decrease the fertility rate via unemployment. According to a July 2020 report by the National Women’s Law Center, “women have disproportionately suffered pandemic-related job losses: since February 2020, women have lost over 8 million net jobs, accounting for 55% of overall net job loss since the start of the pandemic” (Ewing-Nelson). On top of rising “levels of student loan and credit card debt,” unemployment and social distancing measures have forced many couples to delay marriage and pregnancy (Mather). Before the pandemic, the U.S. had already seen a “historically low birthrate” due to women’s increased participation in the workforce, meaning “women are having their first child at a later age. And when that happens, the total number of kids they have is fewer” (Belluz). Now that unemployment numbers are skyrocketing, the nation can expect to see older parents with up to “300,000 to 500,000 fewer births next year” (Kearney and Levine). For many, COVID-19 is simply not the ideal, welcoming baby climate.

While financial hardship is turning parents away from expensive hospital births, the pandemic will also change the fertility experience via fear and COVID healthcare policies. As more patients become afraid to seek or are denied direct hospital care, more expecting parents are turning to alternative, natural birthing plans, like delivering at home with a midwife and/or doula (de Freytas-Tamura). Even before the pandemic, the “rise of surgical births with other medical interventions has meant a set of concerns over the high costs of births, as well as of the safety of maternal and neonatal patients” (Curreli and Marrone 29). Hospital birth is expensive and more risky now that coronavirus poses a potentially fatal threat, making home births seem much more appealing. In fact, the U.S. may see a drive towards European birth culture, “where more than 75 percent of all births are assisted by trained midwives… midwives [are] safer, less expensive, and more likely to facilitate a satisfying experience for the mother and family” (Wagner 37-40). Currently, “only three-quarters of the states allow licenses for midwives to practice out-of-hospital deliveries,” meaning many women will still have to give birth in a hospital or a birthing center (de Freytas-Tamura). As such, several expecting mothers are switching from hospital to birthing center deliveries, a trend that will likely continue to increase past the pandemic.

It’s difficult to say exactly how the pandemic will affect U.S. fertility in the long-term, but there are several short-term responses that suggest what the American birth experience may look like years from now. Unemployment, delayed marriage and birth, and home births are just a few responses indicating a future decrease in fertility and reduced medicalization of birth.


1Based on the U.S. COVID-19 mortality rate reported on October 1, 2020.


Works Cited

Belluz, Julia. “The historically low birthrate, explained in 3 charts.” Vox, 22 May 2018, https://www.vox.com/science-and-health/2018/5/22/17376536/fertility-rate-united-states-births-women.

“CDC COVID Data Tracker.” CDC, https://covid.cdc.gov/covid-data-tracker/#cases_casesinlast7days. Accessed 1 October 2020.

Curreli, Misty, and Catherine Marrone. “Professional Certification and Doula Work: Measuring the Significance of Credentialing in the Field of Birth Companionship.” Marrone, pp. 29-34.

De Freytas-Tamura, Kimiko. “Pregnant and Scared of ‘Covid Hospitals,’ They’re Giving Birth at Home.” The New York Times, 21 April 2020, https://www.nytimes.com/2020/04/21/nyregion/coronavirus-home-births.html.

Ewing-Nelson, Claire. “June Brings 2.9 Million Women’s Jobs Back, Many of Which Are At Risk of Being Lost Again.” National Women’s Law Center, July 2020, https://nwlc-ciw49tixgw5lbab.stackpathdns.com/wp-content/uploads/2020/07/june-jobs-fs-1.pdf.

Kearney, Melissa S., and Phillip B. Levine. “Half a million fewer children? The coming COVID baby bust.” The Brookings Institution, 15 June 2020, https://www.brookings.edu/research/half-a-million-fewer-children-the-coming-covid-baby-bust/.

Marrone, Catherine, editor. Deeply Private, Incredibly Public: Readings on the Sociology of Human Reproduction. Cognella, 2019.

Mather, Mark. “Life on Hold: How the Coronavirus Is Affecting Young People’s Major Life Decisions.” Population Reference Bureau, 23 July 2020, https://www.prb.org/how-the-coronavirus-is-affecting-major-life-decisions/.

Wagner, Marsden. “Maternity Care in Crisis: Where are the Doctors?” Marrone, pp. 35-41.

The Micronesian Suicide Epidemic

by Brandon Chavez, January 25, 2021

Brandon Chavez is a Class of 2024 undergraduate majoring in History. He enjoys learning about social and political issues in other countries & places around the world. He also enjoys learning about the challenges faced by indigenous populations.

***FALL 2020 CONTEST SUBMISSION***

”Suicide rates since 1960 in Micronesia (the U.S. Trust Territory of the Pacific Islands) have undergone an epidemic-like increase. This phenomenon is focussed narrowly within the 15-24-year male age-group”

(Rubinstein, 1983).

Family plays a quite significant role in Micronesian society. An individual’s self-esteem is very dependent on the acceptance and support of the family, more so than any other contributing factor. A firm place and role in the family is a source of self-esteem for an individual. The significance of familial relations and approvals are shown with one of Hezel’s statistics in his data: “Over 70 percent of all the suicides since 1960 were precipitated by conflicts within the consanguineal family” (Hezel, 55).

This phenomenon of high suicide rates among the male youth in Micronesia was first noticed by Reverend Francis Hezel, a Jesuit who was the director of Xavier High School in the Chuuk islands for nearly 18 years. Reverend Hezel wrote a magazine article about this phenomenon in 1977. Dr. Rubinstein, a researcher at Honolulu’s East-West Center, and Reverend Hazel later decided to research the issue further in the following years where they collected many facts about the situation but unfortunately did not come up with any solutions at the time. A later publication by Hezel in 1989 described the magnitude of the situation in Micronesia in comparison with the suicide rates of the United States: “The general suicide rate for Truk is 40 per 100,000. The rate for Trukese males between 15 and 25 is a startling 250 per 100,000. This is 20 times the youth rate in the United States” (Hezel, 1989).

Hezel observed that these suicides can be linked to small disputes between a young man and an older family member, like an older sibling or parent. Two examples were cited by Hezel to show his observation of the trend: one 13 year old boy hung himself after being scolded by his mother and a 16 year old boy also hung himself after his father refused to give him $1.

Another trend Hezel recognized was that the suicides would be clustered in groups; the death of one young man would often lead to suicides of others in the area. 

When thinking about possible causes for these trends, Hezel initially thought that the process of modernization and its pressures clashing with traditional island societies was responsible for this phenomenon. Hezel and Rubinstein looked further into the issue and found that poor family relations were a common pattern with their research. 

Hezel also described another insight into the issue that he gathered from his research: 

“Rather than an impulsive act, we found the suicides were often the result of a longterm intolerable situation”

(Hezel, 1983).

Reverend Hezel’s insight reveals that these suicides in Micronesia are not impulsive, but that there is a cultural aspect to the situation, regarding a traditional island defense mechanism taken to an extreme. The word “amwunumwun” is used by the Chuukese to describe the behavior of young men using withdrawal to express shame or anger. Refusing to eat or being silent are examples of actions that these young men engage in when showing this behavior. 

Reverend Hezel and Dr. Rubinstein believed that the strategy of amwunumwun became violent in the 1960s and 1970s where suicide might be considered the most extreme form of this behavior of bringing harm to oneself to save a relationship. A Chuukese suicide victim thought that being dead would repair more to a damaged relationship than if they were alive.In a later publication Reverend Hezel shed new insight on the suicide epidemic in the Chuuk islands (Hezel, 1989).

Figure 1

Note. Hezel found that anger was the leading cause of suicide in several islands in Micronesia (Chuuk, Pohnpei, Kosrae and Yap), the Marshall Islands and Palau (Hezel, 1989, p. 49).

Hezel also sought to find out the significance of the types of interpersonal and familial relationships that lead to suicide in Micronesia. Below is the table of his recorded data:

Figure 2

(Hezel, 1989, p. 51)

The table revealed that a relational disruption or conflict between a young man and his parents was often the most common cause of relational disruption that led to suicide. Hezel notes that in suicide cases that were led by disruptions in nonfamily relationships, the victim might break off familial ties because of the shame that might be bringing to their family and fear of what their family members’ reactions woud be. The victim was ashamed of actions that could offend their family and feared a consequential disruption in familial relations.

In 2007,  Dr. Mao-Sheng Ran, a professor at the University of Hong Kong, reviewed pre-existing data on the characteristics of suicide in Micronesia. 

Dr. Ran’s research found another phenomena that highlights the effect of mental health on suicide in Micronesia the effect of mental health on suicide in Micronesia compared with another country such as the United States.

Figure 3

(Ran, 2007, p. 83).

The bar graph above reveals an interesting and peculiar observation about the correlation between mental illness and suicide victims in Micronesia. Only 10% of suicide victims in Micronesia had psychiatric disorders, while 90% of suicide victims in the United States had mental illness. Dr. Ran states that: “Mental illness did not appear to be an important factor in Micronesian suicides. Most of the victims have had no serious delinquency problems, psychological abnormality, or psychosis” (Ran, 83).

Dr. Ran noted that intergenerational conflict was the most common cause that led to suicide and most suicides occured because of a conflict, misunderstanding or argument between a young victim and their parents or older relative. 

The definition of anger in Hezel’s research is further explored in Dr. Ran’s review. Hezel’s publication in 1989 cited three distinct patterns of suicides which included anger suicides, shame suicides and psychotic suicides. It was previously mentioned in Hezel’s publication that anger suicides were the most prominent in Micronesian suicide cases, but this definition of anger adds a new understanding to the situation. Ran established that:”The definition of ‘anger’ was similar to the way Americans describe depression”(Ran, 2007, pg. 84). This definition of anger shows a cultural difference in how anger is defined in Micronesian society and American society. 

The review also included several aspects and social changes that may be responsible for the high suicide rate in Micronesia. The first change is the expansion of a cash economy in Micronesia and the decreasing reliance on subsistence production. The production may be responsible for weakening the significance of clan and lineage activities. The decline in clan and lineage activities narrows social support for teenagers, increases reliance and dependence on parents, and increases  parental-adolescent conflicts.The second change is the acceptance of suicide which can be attributed to this increase in suicide rates. As suicide becomes common among the youth, it became more acceptable and even expected.

According to Hezel, western solutions such as suicide prevention hotlines and counseling would not fully solve the suicide epidemic witnessed in Micronesia as the issue is not only psychological but also cultural. Dr. Ran offered several suggestions for future research to combat the issue. Ran suggests that there should be more surveillance on suicidal behavior in Micronesia, independent research on preventive and risk factors, and a longitudinal study on social and economic shifts affecting the male youth. Since there is not many mental health professionals available, Ran suggests that more individuals should be trained to counter the issue of suicide. 

The Micronesian suicide epidemic is quite unique as the root of the issue is concerned more with the inter-generational conflict and socio-cultural elements found within Micronesian society rather than mental illness. Solutions to the issue and research on the topic cannot be treated in a western approach, as the act of suicide has shown to be woven into the youth culture of Micronesian society. Future studies, research, and clinical approaches must consider the socio-cultural elements of Micronesian society & family to make progress in combating the Micronesian suicide epidemic.


References

Hezel, F. (1989). Suicide and the Micronesian family. The Contemporary Pacific, 1(1/2), 43–74. Retrieved November 30, 2020, from http://www.jstor.org/stable/23701892 

Micronesia’s male suicide rate defies solution. (1983, March 06). The New York Times. Retrieved November 30, 2020, from https://www.nytimes.com/1983/03/06/us/micronesia-s-male-suicide-rate-defies-solution. html 

Ran, Mao-Sheng. (2007). Suicide in Micronesia: A systematic review. Primary Psychiatry, 14(11), 80–87. Retrieved November 30, 2020, from https://www.researchgate.net/publication/262882325_Suicide_in_Micronesia_A_Systematic_Review

Rubinstein, D. H. (1983). Epidemic suicide among Micronesian adolescents. Social Science & Medicine, 17(10), 657–665. doi:10.1016/0277-9536(83)90372-6