Abstract

Excerpted From: Muhammad Hamza Habib, Under-treatment of Pain in Black Patients: A Historical Overview, Case-based Analysis, and Legalities as Explored Through the Tenets of Critical Race Theory, 20 Indiana Health Law Review 63 (2023) (130 Footnotes) (Full Document)

Jacqulyn Dillon, who preferred to go by Jacqui, was a 46-year-old patient with a history of Sickle Cell disease with multiple painful crises during her childhood. About three years ago (at the age of 43), Jacqui was diagnosed with breast cancer, that had spread into her liver and bones, including her spine and ribs. Jacqui had previously received chemotherapy and radiation to treat her cancer, but unfortunately, the disease continued to spread. During our first meeting, Jacqui's provided details regarding her clinical case, who was on a Phase-1 clinical trial after her cancer further grew on the last line of chemotherapy.

A clinical trial under her circumstances, is a treatment regimen whose safety and efficacy has not been completely proven. Clinical trials are administered as a last resort to treat the patient's untreatable cancer, but its primary intent is to determine its safety and side effects in humans. Also, clinical trials determine whether such treatments will stop the growth of a specific cancer. In short, clinical trials are an attempt to primarily see if future patients will benefit from that particular treatment. At the start of the trial, and if the trial was unsuccessful, Jacqui's likely clinical prognosis was six months.

I have worked closely with Jacqui over the last year, managing her pain and providing supportive oncological and palliative care, providing support as she gradually moved towards a terminal stage of her cancer, which led to her death a few months later.

Pain has been called the “fifth vital-sign” in clinical settings. Over the last few years, clinical research has shown significant under-treatment of pain in Black patients compared to White patients under similar clinical circumstances. This Article examines various angles of pain undertreatment in Black patients through the lens of tenets of Critical Race Theory (“CRT”). Racism in pain management settings, whether conscious or unconscious, is a permanent part of medical care for Black patients, which involves all imaginable primary and specialty healthcare settings in the United States. It is later discussed how Black patients are disadvantaged from a medication supply and pharmaceutical availability standpoint in their neighborhoods. It investigates deeper into the underlying causes of such disparity, looking at how news and entertainment media feed into a false narrative. It also discusses how the medical education system has failed to correct many long-standing fallacies relating to pain management in Black patients.

This Article also explores the understudied issue of undertreatment of pain in Black patients through a case study of a real-life patient, Jacqui, and her encounters with disparities in pain management as a Black patient. Part I provides key medical definitions and understandings regarding pain. Part II introduces the tenets of CRT, which this paper which will be used to discuss the undertreatment of Black patients. Part III introduces Jacqui and narrates her various health conditions, and her experience receiving care for pain associated with her medical issues. Part IV contextualizes Jacqui's experience by providing a historical and medical research-based overview of poor medical care in Black patients, which analyses the disparity, its social impact, and its role in subsequent mistrust of the healthcare system by the Black community. Part V examines the legalities and issues with malpractice in similar clinical scenarios by looking at legislation and case law. Part VI focuses on approaches to minimize this discrepancy on various levels of clinical education, training, and healthcare management from an administrative and procedural standpoint.

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Coming back to our clinical case, we continued Jacqui on Oxycodone initially, and then added some long-acting Morphine for her pain as well. She felt that with better pain control, she was able to walk more, eat better, and get more restful sleep at night. She was very thankful for the compassionate care, and appropriately liberal pain management. Jacqui continued to come weekly to our clinic for the next 3 months, getting blood draws, clinical exams, and CT scans to see the response to the experimental clinical trial. She initially did well and was able to visit her sister in North Carolina when COVID-19 infection incidence decreased. She spent her birthday there with her husband, Tanisha, and both her sisters.

Upon return from North Carolina, she continued to do well for a few weeks. But later she started feeling short of breath and fatigued. We did blood draws and scans, and it showed that she was very anemic, and her disease had further spread in her liver and lungs. She later required Oxygen for breathing comfortably. About 2 weeks later, we heard that she was getting weaker, and felt that she could not come to the cancer center for more treatments. We did a telemedicine visit with her via computer. She looked very weak and frail. Tanisha told us that she had stopped eating a few days ago and was only able to sip some water. Even with all this happening, she seemed to have her sense of humor, and said that she' ... talked to God last night, and he told her that he has a room for her in heaven ...'. We talked to her and her family in more detail, and she said that she wanted to focus on comfort at this point. She also stated that she did not want to be placed on ventilators or other life support machines and wanted to go naturally and peacefully. We ordered some more Morphine for her at home, in addition to requesting home hospice care. Three days later, Tanisha called us stating that Jacqui had passed comfortably in her sleep, and she wanted our team to come in for her funeral service. We all went there after work on a Thursday, and saw her resting comfortably in the open casket, looking blissful with a beautiful smile on her face. They had pictures of her with our team during her last six months, probably the toughest months of her life. But I think that she had seen tougher years growing up as a Black girl with Sickle cell disease, and Appendicitis where no one acknowledged her pain, and later as an adult when her pain complaints after a large fracture and Vertebral disc rupture were ignored. She braved through it all, the pain, the ignored complaints, and the subsequent suffering and disability. But she continued to serve her community as a schoolteacher even through all these troubling times. Clearly, after all that she had been through her life, Cancer was just a walk in the park for this brave lady.

Under recognition and under treatment of Black patients' pain is a sad reality for a healthcare system that prides itself in inclusion and liberalism. It is a national embarrassment for the US, that major health outcomes including adequate pain management for Black patients are significantly poorer when compared to their White counterparts. This paper talks about discrepancies in pain management in various fields of medicine through the lens of tenets of CRT. Through the clinical case of Jacqui, it describes various difficulties faced by Black patients in getting their pain recognized, and adequately treated.

By looking at these disparities in pain management for Black patients through the tenets of CRT, we can see that there is a huge need for grass root effort to recognize this disparity. In addition, there needs to be an improvement medical education system, healthcare funding, and research to correct the fallacies that bias clinicians in their pain management approaches when treating Black patients. Also, there needs to be improved mental health and substance abuse resources available for these patients who have been stigmatized and mistreated in the US healthcare system. In addition, there needs to be better perception of Black people in media and news, where a new and more positive image needs to be portrayed to eliminate the currently displayed criminal portrayal that biases everyone including the healthcare providers. More importantly, there is a dire need for creation of pathways to improve representation of Black physicians and healthcare leaders that help improve these discrepancies from top down.

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Assistant Professor of Medicine; Director, Outpatient Palliative Medicine and Cancer Pain Service; Interventional Pain Medicine/ Hospice & Palliative Medicine; Rutgers Cancer Institute of New Jersey, Division of Medical Oncology.