By Christopher Young, Contributing Writer, A Moral Monday March was conducted by the Mississippi Poor People’s Campaign joining forces with Poor People’s Campaign: A National Call for Moral Revival on Monday, September 26, in downtown […]
By Janice K. Neal-Vincent, Ph.D., Contributing Writer, On Monday, September 26, 2022, during the 12:00 noon luncheon at the Downtown Jackson Rotary Club meeting held at the Mississippi Agriculture and Forestry Museum, Mississippi songstress Pam […]
By Janice K. Neal-Vincent, Ph.D., Contributing Writer, A week of free Quilt displays and events honoring black and brown lives lost to AIDS has been going on in the City of Jackson and surrounding areas […]
[UPDATED on Nov. 14]
David Confer, a bicyclist and an audio technician, told his doctor he “used to be Ph.D. level” during a 2019 appointment in Washington, D.C. Confer, then 50, was speaking figuratively: He was experiencing brain fog — a symptom of his liver problems. But did his doctor take him seriously? Now, after his death, Confer’s partner, Cate Cohen, doesn’t think so.
Confer, who was Black, had been diagnosed with non-Hodgkin lymphoma two years before. His prognosis was positive. But during chemotherapy, his symptoms — brain fog, vomiting, back pain — suggested trouble with his liver, and he was later diagnosed with cirrhosis. He died in 2020, unable to secure a transplant. Throughout, Cohen, now 45, felt her partner’s clinicians didn’t listen closely to him and had written him off.
That feeling crystallized once she read Confer’s records. The doctor described Confer’s fuzziness and then quoted his Ph.D. analogy. To Cohen, the language was dismissive, as if the doctor didn’t take Confer at his word. It reflected, she thought, a belief that he was likely to be noncompliant with his care — that he was a bad candidate for a liver transplant and would waste the donated organ.
For its part, MedStar Georgetown, where Confer received care, declined to comment on specific cases. But spokesperson Lisa Clough said the medical center considers a variety of factors for transplantation, including “compliance with medical therapy, health of both individuals, blood type, comorbidities, ability to care for themselves and be stable, and post-transplant social support system.” Not all potential recipients and donors meet those criteria, Clough said.
Doctors often send signals of their appraisals of patients’ personas. Researchers are increasingly finding that doctors can transmit prejudice under the guise of objective descriptions. Clinicians who later read those purportedly objective descriptions can be misled and deliver substandard care.
Discrimination in health care is “the secret, or silent, poison that taints interactions between providers and patients before, during, after the medical encounter,” said Dayna Bowen Matthew, dean of George Washington University’s law school and an expert in civil rights law and disparities in health care.
Bias can be seen in the way doctors speak during rounds. Some patients, Matthew said, are described simply by their conditions. Others are characterized by terms that communicate more about their social status or character than their health and what’s needed to address their symptoms. For example, a patient could be described as an “80-year-old nice Black gentleman.” Doctors mention that patients look well-dressed or that someone is a laborer or homeless.
The stereotypes that can find their way into patients’ records sometimes help determine the level of care patients receive. Are they spoken to as equals? Will they get the best, or merely the cheapest, treatment? Bias is “pervasive” and “causally related to inferior health outcomes, period,” Matthew said.
Narrow or prejudiced thinking is simple to write down and easy to copy and paste over and over. Descriptions such as “difficult” and “disruptive” can become hard to escape. Once so labeled, patients can experience “downstream effects,” said Dr. Hardeep Singh, an expert in misdiagnosis who works at the Michael E. DeBakey Veterans Affairs Medical Center in Houston. He estimates misdiagnosis affects 12 million patients a year.
Conveying bias can be as simple as a pair of quotation marks. One team of researchers found that Black patients, in particular, were quoted in their records more frequently than other patients when physicians were characterizing their symptoms or health issues. The quotation mark patterns detected by researchers could be a sign of disrespect, used to communicate irony or sarcasm to future clinical readers. Among the types of phrases the researchers spotlighted were colloquial language or statements made in Black or ethnic slang.
“Black patients may be subject to systematic bias in physicians’ perceptions of their credibility,” the authors of the paper wrote.
That’s just one study in an incoming tide focused on the variations in the language that clinicians use to describe patients of different races and genders. In many ways, the research is just catching up to what patients and doctors knew already, that discrimination can be conveyed and furthered by partial accounts.
Confer’s MedStar records, Cohen thought, were pockmarked with partial accounts — notes that included only a fraction of the full picture of his life and circumstances.
Cohen pointed to a write-up of a psychosocial evaluation, used to assess a patient’s readiness for a transplant. The evaluation stated that Confer drank a 12-pack of beer and perhaps as much as a pint of whiskey daily. But Confer had quit drinking after starting chemotherapy and had been only a social drinker before, Cohen said. It was “wildly inaccurate,” Cohen said.
“No matter what he did, that initial inaccurate description of the volume he consumed seemed to follow through his records,” she said.
Physicians frequently see a harsh tone in referrals from other programs, said Dr. John Fung, a transplant doctor at the University of Chicago who advised Cohen but didn’t review Confer’s records. “They kind of blame the patient for things that happen, not really giving credit for circumstances,” he said. But, he continued, those circumstances are important — looking beyond them, without bias, and at the patient himself or herself can result in successful transplants.
David Confer and Cate Cohen in summer 2016 visiting the Outer Banks of North Carolina. Throughout Confer’s battle with non-Hodgkin lymphoma, Cohen says, she felt her partner’s clinicians didn’t listen closely to him and had written him off. Confer died in 2020, unable to secure a liver transplant. (Cate Cohen)
The History of One’s Medical History
That doctors pass private judgments on their patients has been a source of nervous humor for years. In an episode of the sitcom “Seinfeld,” Elaine Benes discovers that a doctor had condescendingly written that she was “difficult” in her file. When she asked about it, the doctor promised to erase it. But it was written in pen.
The jokes reflect long-standing conflicts between patients and doctors. In the 1970s, campaigners pushed doctors to open up records to patients and to use less stereotyping language about the people they treated.
Nevertheless, doctors’ notes historically have had a “stilted vocabulary,” said Dr. Leonor Fernandez, an internist and researcher at Beth Israel Deaconess Medical Center in Boston. Patients are often described as “denying” facts about their health, she said, as if they’re not reliable narrators of their conditions.
One doubting doctor’s judgment can alter the course of care for years. When she visited her doctor for kidney stones early in her life, “he was very dismissive about it,” recalled Melina Oien, who now lives in Tacoma, Washington. Afterward, when she sought care in the military health care system, providers — whom Oien presumed had read her history — assumed that her complaints were psychosomatic and that she was seeking drugs.
“Every time I had an appointment in that system — there’s that tone, that feel. It creates that sense of dread,” she said. “You know the doctor has read the records and has formed an opinion of who you are, what you’re looking for.”
A decade and a half later, when Oien left military care in 2013, her paper records didn’t follow her. Nor did those assumptions.
New Technology — Same Biases?
While Oien could leave her problems behind, the health system’s shift to electronic medical records and the data-sharing it encourages can intensify misconceptions. It’s easier than ever to maintain stale records, rife with false impressions or misreads, and to share or duplicate them with the click of a button.
“This thing perpetuates,” Singh said. When his team reviewed records of misdiagnosed cases, he found them full of identical notes. “It gets copy-pasted without freshness of thinking,” he said.
Research has found that misdiagnosis disproportionately happens to patients whom doctors have labeled as “difficult” in their electronic health record. Singh cited a pair of studies that presented hypothetical scenarios to doctors.
In the first study, participants reviewed two sets of notes, one in which the patient was described simply by her symptoms and a second in which descriptions of disruptive or difficult behaviors had been added. Diagnostic accuracy dropped with the difficult patients.
The second study assessed treatment decisions and found that medical students and residents were less likely to prescribe pain medications to patients whose records included stigmatizing language.
Digital records can also display prejudice in handy formats. A 2016 paper in JAMA discussed a small example: an unnamed digital record system that affixed an airplane logo to some patients to indicate that they were, in medical parlance, “frequent flyers.” That’s a pejorative term for patients who need plenty of care or are looking for medications.
But even as tech might amplify these problems, it can also expose them. Digitized medical records are easily shared — and not merely with fellow doctors, but also with patients.
Since the ’90s, patients have had the right to request their records, and doctors’ offices can charge only reasonable fees to cover the cost of clerical work. Penalties against practices or hospitals that failed to produce records were rarely assessed — at least until the Trump administration, when Roger Severino, previously known as a socially conservative champion of religious freedom, took the helm of the U.S. Department of Health and Human Services’ Office for Civil Rights.
During Severino’s tenure, the office assessed a spate of monetary fines against some practices. The complaints mostly came from higher-income people, Severino said, citing his own difficulties getting medical records. “I can only imagine how much harder it often is for people with less means and education,” he said.
Patients can now read the notes — the doctors’ descriptions of their conditions and treatments — because of 2016 legislation. The bill nationalized policies that had started earlier in the decade, in Boston, because of an organization called OpenNotes.
For most patients, most of the time, opening record notes has been beneficial. “By and large, patients wanted to have access to the notes,” said Fernandez, who has helped study and roll out the program. “They felt more in control of their health care. They felt they understood things better.” Studies suggest that open notes lead to increased compliance, as patients say they’re more likely to take medicines.
But there’s also a darker side to opening records: if patients find something they don’t like. Fernandez’s research, focusing on some early hospital adopters, has found that slightly more than 1 in 10 patients report being offended by what they find in their notes.
And the wave of computer-driven research focusing on patterns of language has similarly found low but significant numbers of discriminatory descriptions in notes. A study published in the journal Health Affairs found negative descriptors in nearly 1 in 10 records. Another team found stigmatizing language in 2.5% of records.
Patients can also compare what happened in a visit with what was recorded. They can see what was really on doctors’ minds.
Oien, who has become a patient advocate since moving on from the military health care system, recalled an incident in which a client fainted while getting a drug infusion — treatments for thin skin, low iron, esophageal tears, and gastrointestinal conditions — and needed to be taken to the emergency room. Afterward, the patient visited a cardiologist. The cardiologist, who hadn’t seen her previously, was “very verbally professional,” Oien said. But what he wrote in the note — a story based on her ER visit — was very different. “Ninety percent of the record was about her quote-unquote drug use,” Oien said, noting that it’s rare to see the connection between a false belief about a patient and the person’s future care.
Spotting those contradictions will become easier now. “People are going to say, ‘The doc said what?’” predicted Singh.
But many patients — even ones with wealth and social standing — may be reluctant to talk to their doctors about errors or bias. Fernandez, the OpenNotes pioneer, didn’t. After one visit, she saw a physical exam listed on her record when none had occurred.
“I did not raise that to that clinician. It’s really hard to raise things like that,” she said. “You’re afraid they won’t like you and won’t take good care of you anymore.”
[Correction: This article was updated at 11:30 a.m. ET on Nov. 14, 2022, to accurately reflect the time Melina Oien spent in the military health care system.]
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JACKSON, Miss. — In mid-September, Howard Sanders bumped down pothole-ridden streets in a white Cadillac weighed down with water bottles on his way to a home in Ward 3, a neglected neighborhood that he called “a war zone.”
Sanders, director of marketing and outreach for Central Mississippi Health Services, was then greeted at the door by Johnnie Jones. Since Jones’ hip surgery about a month ago, the 74-year-old had used a walker to get around and hadn’t been able to get to any of the city’s water distribution sites.
Jackson’s routine water woes became so dire in late August that President Joe Biden declared a state of emergency: Flooding and water treatment facility problems had shut down the majority-Black city’s water supply. Although water pressure returned and a boil-water advisory was lifted in mid-September, the problems aren’t over.
Bottled water is still a way of life. The city’s roughly 150,000 residents must stay alert — making sure they don’t rinse their toothbrushes with tap water, keeping their mouths closed while they shower, rethinking cooking plans, or budgeting for gas so they can drive around looking for water. Many residents purchase bottled water on top of paying water bills, meaning less money for everything else. For Jackson’s poorest and oldest residents, who can’t leave their homes or lift water cases, avoiding dubious water becomes just that much harder.
“We are shellshocked, we’re traumatized,” Sanders said.
Jackson’s water woes are a manifestation of a deeper health crisis in Mississippi, whose residents have pervasive chronic diseases. It is the state with the lowest life expectancy and the highest rate of infant mortality.
“The water is a window into that neglect that many people have experienced for much of their lives,” said Richard Mizelle Jr., a historian of medicine at the University of Houston. “Using bottled water for the rest of your life is not sustainable.”
But in Jackson an alternative doesn’t exist, said Dr. Robert Smith. He founded Central Mississippi Health Services in 1963 as an outgrowth of his work on civil rights, and the organization now operates four free clinics in the Jackson area. He often sees patients with multiple health conditions such as diabetes, hypertension, or heart problems. And unsafe water could lead to death for people who do their dialysis at home, immunocompromised individuals, or babies who drink formula, said Smith.
Dr. Robert Smith founded Central Mississippi Health Services in 1963 as an outgrowth of his work on civil rights.(Renuka Rayasam / KHN)
Residents filed a lawsuit this month against the city and private engineering firms responsible for the city’s water system, claiming they had experienced a host of health problems — dehydration, malnutrition, lead poisoning, E. coli exposure, hair loss, skin rashes, and digestive issues — as a result of contaminated water. The lawsuit alleges that Jackson’s water has elevated lead levels, a finding confirmed by the Mississippi State Department of Health.
While Jackson’s current water situation is extreme, many communities of color, low-income communities, and those with a large share of non-native English speakers also have unsafe water, said Erik Olson, senior strategic director for health and food at the Natural Resources Defense Council. These communities are more frequently subjected to Safe Drinking Water Act violations, according to a study by the nonprofit advocacy group. And it takes longer for those communities to come back into compliance with the law, Olson said.
The federal infrastructure bill passed last year includes $50 billion to improve the country’s drinking water and wastewater systems. Although Mississippi is set to receive $429 million of that funding over five years, Jackson must wait — and fight — for its share.
And communities often spend years with lingering illness and trauma. Five years after the start of the water crisis in Flint, Michigan, about 20% of the city’s adult residents had clinical depression, and nearly a quarter had post-traumatic stress disorder, according to a recent paper published in JAMA.
Jones, like many locals, hasn’t trusted Jackson’s water in decades. That distrust — and the constant vigilance, extra expenses, and hassle — add a layer of psychological strain.
“It is very stressful,” Jones said.
For the city’s poorest communities, the water crisis sits on top of existing stressors, including crime and unstable housing, said Dr. Obie McNair, chief operating officer of Central Mississippi Health Services. “It’s additive.”
Over time, that effort and adjustment take a toll, said Mauda Monger, chief operating officer at My Brother’s Keeper, a community health equity nonprofit in Jackson. Chronic stress and the inability to access care can exacerbate chronic illnesses and lead to preterm births, all of which are prevalent in Jackson. “Bad health outcomes don’t happen in a short period of time,” she said.
For Jackson’s health clinics, the water crisis has reshaped their role. To prevent health complications that can come from drinking or bathing in dirty water, they have been supplying the city’s most needy with clean water.
“We want to be a part of the solution,” McNair said.
Community health centers in the state have a long history of filling gaps in services for Mississippi’s poorest residents, said Terrence Shirley, CEO of the Community Health Center Association of Mississippi. “Back in the day, there were times when community health centers would actually go out and dig wells for their patients.”
Central Mississippi Health Services had been holding water giveaways for residents about two times a month since February 2021, when a winter storm left Jackson without water for weeks.
But in August, things got so bad again that Sanders implored listeners of a local radio show to call the center if they couldn’t get water. Many Jackson residents can’t make it to the city’s distribution sites because of work schedules, lack of transportation, or a physical impairment.
“Now, all of a sudden, I am the water man,” Sanders said.
Thelma Kinney Cornelius stores the water she gets from Howard Sanders of Central Mississippi Health Services in her garage.(Renuka Rayasam / KHN)
Thelma Kinney Cornelius, 72, first heard about Sanders’ water deliveries from his radio appearances. She hasn’t been able to drive since her treatment for intestinal cancer in 2021. She rarely cooks these days. But she made an exception a few Sundays ago, going through a case of bottled water to make a pot of rice and peas.
“It’s a lot of adjustment trying to get into that routine,” said Cornelius. “It’s hard.”
The day that Jackson’s boil-water advisory was lifted, Sanders was diagnosed with a hernia, probably from lifting heavy water cases, he said. Still, the following day, Sanders drove around the Virden Addition neighborhood with other volunteers, knocking on people’s doors and asking whether they needed water.
He said he has no plans to stop water deliveries as Jackson residents continue to deal with the long-term fallout from the summer’s crisis. Residents are still worried about lead or other harmful contaminants lurking in the water.
“It’s like a little Third World country over here,” Sanders said. “In all honesty, we will probably be on this for the next year.”
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