My Story

When people talk about health care “disparities” they are referring to a statistical result, not the actual prejudicial behavior that produces distinctly different outcomes based on factors like race and social status. The focus is on numbers, a convenient abstraction.

Mendacity and neglect in the form of omissions or commissions directed toward people are based on observable attributes such as:

-What they look like;

-Whether they appear to have money to pay;

-Whether they are able to articulate in standard English;

-Whether they have the capacity to comprehend diagnostic/treatment processes, or adhere to care plans.

In all these ways, prejudice shapes the health care system. Numbers aren’t culpable. People are.

My story is the story of a Black man neglected and dismissed by the American health care system. Mine wasn’t a fatal encounter, but it did lead to longer term complications—in effect ending a lifelong streak of consistent good health achieved in large measure by having avoided the health care system. The experience opened my eyes to systemic malpractice in the treatment of minorities by the health care system, and inspired a commitment to fearlessly pursing the truth behind the atrocious outcomes for people of color managing physical illness and trauma in this country.

My story began with a visit to the dentist. During the procedure, I experienced growing pressure in my lower abdomen and an inability to urinate. That evening, I continued to experience pressure and urge to urinate. When my symptoms became unbearable later that night, I sought care at a local emergency room.

Upon arrival my vitals were taken, then a triage nurse escorted me to an area curtained off into treatment bays. The nurse brought out what I know now to be a catheter kit containing numerous items including a catheter, two catchment bags, and decontaminating materials.

The first catheter - a flexible version - failed to penetrate to my bladder.

The nurse disappeared with the kit, presumably to dispose of it, and returned some time later. This time the catheter had a “straight,” sturdier tip that bored a successful entry. Upon securing the device by inflating a balloon in my bladder and attaching a drainage tube to my leg, he strapped on a “leg bag,” gathered up the materials and again disappeared. Neither the nurse nor anyone else mentioned the other items in the two kits, completely unpacked them, or described how or why a patient might need to use those materials.

This having been an acute episode occurring in the wee hours of the morning, I was traumatized, sleep deprived, and in no condition to ask meaningful questions. I presume this is the case with many emergency department patients especially if they are 68+ years of age. After the catheter was inserted, decanting 700ml of urine, I was left to await the appearance of a resident physician to examine me. He eventually showed up to execute a cursory scan of my breathing and pulse. He engaged in no efforts to establish a rapport with me, or explain the treatment I received.

The treatment bays in the ED were separated only by curtains; there was no real privacy. Whatever happened in one space was fully audible to anyone in an adjoining space. The space adjoining mine was empty when I first arrived, but was soon occupied by a young white man whom I took to have some affiliation with the military as suggested by on-going exchanges between him and the young woman accompanying him.

Throughout the more than 2 hours I was in the treatment area, there was steady traffic to his space. Although curtained off, I could hear the footfalls of hospital staff as they approached, hoping each time to see my curtain parted and someone arriving to treat me, explain my condition, or otherwise offer care or comfort. Only twice did that happen—when the resident stopped to perfunctorily check my pulse and breathing, and when that same resident returned to unceremoniously discharge me. Otherwise when the footfalls stopped, it was always “next door” at my neighbor’s space. A couple of times a female in scrubs would poke her head through my curtain, give a sheepish smile, then move on next door, apparently having arrived at the wrong patient.

Meanwhile, my neighbor was quite adamant about wanting more painkillers. He was compulsively clicking a morphine device and complaining loudly about his discomfort. He was quite lucid, specific and argumentative. Numerous staff personnel spent time patiently explaining why it wasn’t possible to give him any more of the types of drugs he was demanding, and suggesting things like changing his position to achieve relief, etc. As I lay listening to the hubbub and attention next door, I wondered why there was so little interest in my side of the curtain, given my extreme discomfort, having had an object anchored in the core of my body and a plastic tube exiting through a very sensitive part of my anatomy, draining into a bag strapped to my lower leg. Most of my mental energy, probably framed by a mild sensation of shock, was focused on the implications of that drastic situation.

Although 700 ml of urine had been drained from my distended bladder, I was never as much as offered a drink of water. I was discharged over an hour after the resident gave me his cursory examination, with an offer to make a referral to a urologist. I declined that offer, choosing instead to contact my primary care physician (PCP) later that morning.

As the sun rose and I started to adjust to the reality of my situation, I decided to hop on Google to find out about the procedure I had just endured. Not to my surprise, I learned that there are very specific protocols for managing a catheter system, and there is a distinct risk of serious infection if those protocols are not honored. I was alarmed. I left a message in the electronic medical record for my PCP describing the events of the night and requested a referral for follow-up with a urology specialist.

Unfortunately, this ordeal occurred at the start of the Covid-19 pandemic, when so-called elective appointments were being delayed. When I was offered an appointment date nearly a month away, I was doubly alarmed. I reached out to my PCP, imploring her to recommend some source of support for figuring out what I was supposed to do. My PCP gave a heads-up to the nursing staff at the geriatric clinic where I was normally treated, and mercifully, the head nurse met with me immediately. She patiently and thoroughly marched me through the details of catheter care.

It was only after I observed the head nurse open the catheter kit and spread out the various components on a table, describing each item and its role in the catheter maintenance regimen, that I realized the ED trauma nurse had thrown away the very stuff I needed to take home for my care—not once, but TWICE. How does this happen? The behavior struck me as inexplicable, inexcusable, and most of all dangerous. And no one seemed to notice that I had none of the supplies I needed for self-care until a follow-up appointment could be made…another absurdity.

There is a lot of rhetoric about racial disparities in health care. Prior to the last few months, I had little contact with the health care system, having enjoyed great health for over 67 years. This experience was eye-opening. It was so obvious and crass, although I am sure the ED staff individually would probably not consider themselves to be racist, and would abhor the idea of discrimination in treatment based on race (or any other characteristic). But I know what happened, and documented the experience in my medical record in real time.

It isn’t often that one gets to observe side-by-side differences in the treatment of individuals in a clinical situation. This was one. The experience was clearly negligent and racist, individually and institutionally. I considered the situation so egregious I wrote a letter addressing the hospital corporation directly. That complaint was referred to a “patient relations” flack who eventually sent me a letter denying any wrongdoing. I also registered a complaint with the hospital accrediting agency—receiving a reply saying they had shared my information with the institution in question, but were prohibited from giving me any information about the institution’s response. How’s that for accountability?

I know that I am not the only one. I welcome other tales of terror, particularly from Black men, who have the worst health outcomes of all. There is a reason this is so. And the picture isn’t pretty.