Establishing Trust When Patients Distrust Doctors

Distrust DoctorsDistrust Doctors ??

Multiple studies over an extended period of time confirm what most doctors and providers already knew, African Americans are more likely to distrust doctors and other healthcare providers than patients of other racial or ethnic groups.

What many of us did not know was why.  As providers, we spent many years training to help others.  Medicine is a service profession. Why would anyone suspect our intentions, question our motives, or assign us collectively as untrustworthy?  The answer lies in the historical experience African Americans had with America’s doctors, hospitals, and researchers.

A History of Abuse

While the Tuskegee Syphilis Study is a ‘classic example’ of abuse based purely on race, unfortunately the American experience has many more examples of why African Americans mistrust the medical community.

From African American’s earliest days in this country, abuse based on race was commonplace.  Slaves were frequently used as subjects for dissection, surgical experimentation, and medical testing. J. Marion Sims, MD, the so-called father of modern gynecology perfected many of his surgical techniques on slave girls without anesthesia. Stories of doctors kidnapping and killing southern blacks for experimentation consistently appear in literature throughout American history.

Distrust DoctorsAs Vanesa Northington Gamble, MD, PhD put in her article “Under the Shadow of Tuskegee: African Americans and Health Care” tales of ‘medical student’ grave robbers, recount the exploitation of southern blacks as their deceased family members would be stolen and sent to northern medical schools for anatomy dissection.  Dr. Gable writes:

“These historical examples clearly demonstrate that African Americans’ distrust of the medical profession has a longer history than the public revelations of the Tuskegee Syphilis Study. There is a collective memory among African Americans about their exploitation by the medical establishment.”

Racial Differences in Trust

Chanita Hughes Halbert published a study in JAMA in 2006 looking at racial differences in trust in healthcare providers. Her study of almost one thousand white American and African American patients found that “compared with whites, African Americans were most likely to report low trust in health care providers.”

“Trust has been described as an expectation that medical care providers (physicians, nurses, and others) will act in ways that demonstrate that the patient’s interests are a priority. Trust is a multidimensional construct that includes perceptions of the health care provider’s technical ability, interpersonal skills, and the extent to which the patient perceives that his or her welfare is placed above other considerations. Trust is an important determinant of adherence to treatment and screening recommendations and the length and quality of relationships with health care providers.”

Fortunately, the level of trust a patient has for any specific provider is not stagnant, it can be earned.  Increased exposure to providers in general, and to the same provider in specific, has been shown to improve trust.

Physician Bias

In the “Medscape Internist Lifestyle Report 2017“, Carol Peckham looked at internist’s admitted explicit biases “toward specific types or groups of patients” and found wide differences between racial groups in bias for a number of influences.  The study further examined if the physician bias actually impacted care delivery, and almost one in five providers (18%) admitted that their bias did impact the quality of their care.

Generally these biases are positive toward white American patients and negative toward African American patients as a study by Oliver et al demonstrated at the University of Virginia. They found providers explicitly preferred white Americans to African Americans with “significantly higher feelings of warmth toward white people” and also found that white American patients were “more medically cooperative than African Americans”.  This study found no significant difference in the quality of care between the racial groups.

“physicians demonstrated implicit pro-white bias, reported an explicit preference for white people, had beliefs that blacks were less medically cooperative than whites, and believed that subconscious biases could influence their clinical decision making.”

Unconscious Bias

Biases that effect medical care can be consciously counteracted, and admitting the existence of biases is the critical first step in canceling its effect on medical care. Having a doctor who professes to treating “everyone the same” will undoubtedly provide inferior care to patients that are different.

A study done at Johns Hopkins by Lisa Cooper and colleagues found that primary care physicians who hold unconscious racial biases tend to dominate conversations with African-American patients during routine visits, paying less attention to patients’ social and emotional needs, and making these patients feel less involved in decision making related to their health. These patients also reported reduced trust in their doctors, less respectful treatment, and a lower likelihood of recommending the physician to a friend.

Because there are a limited number of physicians to provide care to African Americans, many patients simply “put up” with biases and unequal treatment . . . with others avoiding healthcare altogether until they they arrive in Emergency Departments with very advanced disease.

Patient Centered Care Improves Quality

Patient centered care can positively improve care, specifically for African Americans.  Although this seems obvious, spending time with patients is an easy approach to establishing trust. Fiscella and colleagues measured patient trust against the time spent with a patient and found a one-to-one correlation: the more time spent led to more perceived trust on the part of the patient. Making suggestions about diet changes requires a trusting relationship that involves a non-judgmental regard for the current diet.

Many delays in diagnosis and treatment are simply an outgrowth of the lack of trust. You will not accept someones advice if you don’t trust them.

Find a physician you trust.

Kidney Disease in African Americans

Kidney disease in African Americans

Kidney disease in African Americans is one the most dramatically different occurrences of a disease, and results in significant suffering and death.  Generally kidney disease is the result of diabetes and high blood pressure, and given the increased number of both of these in African Americans, there is a six to twelve-fold increased occurrence compared to whites.  Additionally, there is a 17-fold greater rate of high blood pressure as a cause of kidney failure in African Americans.  If you have high blood pressure or diabetes, or both, your risk for kidney failure resulting in needing dialysis is MUCH higher if you are African American.
Having diabetes and high blood pressure that is controlled on medications almost erases this increased risk. This is why it is critical that if you have high blood pressure, you should take medication to bring it down. If you have diabetes, you should make sure your blood sugars are controlled because if you don’t, your risk for needing dialysis is very high.
Kidney disease in African Americans

Risk for Requiring Dialysis is High

While African Americans are 13 percent of the general population, we make up 35 percent of all patients on chronic dialysis.  Diabetes as the leading cause of kidney failure and high blood pressure is the second most common cause.
Not having medical insurance or access to medical facilities and the increased number of people with high blood pressure contribute greatly to kidney disease in African Americans.  Having high blood pressure but being on the wrong medications can contribute as well.

Well designed studies have failed to fully account for the excess proportion of kidney disease in Blacks.  Anatomically, despite equivalent age, blood pressure, and other factors, African Americans tend to have reduced kidney blood flow. Despite similar dietary salt intake, the kidney’s processing of bodily fluids are somewhat different in African Americans compared to whites.  Reducing salt in your diet can greatly improve health.

A Possible Genetic Cause?

The Tsetse Fly transmits the African Sleeping Sickness. By International Atomic Energy Agency

Some of the increased risk for kidney disease in African Americans is attributed to a genetic variant (APOL1) found in more than 30% of African Americans and largely absent in white Americans.  It is thought that this gene offered protection from African Sleeping Sickness (a frequently deadly disease known in medical circles as African trypanosomiasis) that was carried by the Tsetse fly. Basically, having this gene gave protection from the African Sleeping Sickness and was beneficial in African regions where the tsetse fly lived.
Scientists believe that the increased risk for kidney disease seen in African Americans is equal to the increased occurrence of the same gene that offered protection from the deadly African Sleeping Sickness.

Obesity Can Lead to Kidney Problems Too

In addition to these genetic differences, researchers also suspect that increased obesity in African Americans is driving up kidney disease.  They found that as your BMI (Body Mass Index is calculated based on your weight and height) gets higher, the risk for kidney problems increases.

With all of the kidney disease in the African American community, there is one last bit of curious news.  African Americans have a better survival rate on dialysis than white Americans.  This paradox of improved survival in African Americans after initiation of dialysis has puzzled researchers.  Researchers at the Wake Forest School of Medicine suggest that the improved survival may also be due to the very gene that causes the problem . . . the APOL1 gene.  In this case the APOL1 gene gives protection against hardening of the arteries while on dialysis.

Kidney Disease in African AmericansHere’s What You Need To Do . . .

Kidney disease in African Americans can be a confusing topic to understand and there is a lot to consider.  The most important points are:

  1. If you have high blood pressure, take your medicine and watch your salt intake so that your pressure stays normal. That will allow your kidneys to stay normal.
  2. If you have diabetes, take your medicine and watch your diet so that your blood sugars stay normal.
  3. Watch your weight because the bigger you are, the higher your chance for kidney disease.


Atrial Fibrillation in African Americans

Atrial Fibrillation in African Americans

Atrial fibrillation in African Americans, also called “A Fib”, effects one in nine before the age of 80 and is the most prevalent arrhythmia in the US and is associated with significant bad outcomes that include stroke, heart failure, and increased death.  Surprisingly, studies also confirm a decreased atrial fibrillation incidence in African Americans (41% lower risk of being diagnosed than European Americans) but a greatly increased occurrence of stroke and sudden death in African Americans with atrial fibrillation. So compared to whites, African Americans are less likely to get atrial fibrillation, more commonly called “A Fib”, but if they get it, are more likely to have complications. This is just one of many “important differences” that exist in the care of African Americans.

“Racial Paradox?”

Some have suggested that the decreased incidence of atrial fibrillation in African Americans is actually under-diagnosis, but others have called it a “racial paradox” where despite atrial fibrillation being a result of increased high blood pressure, diabetes, over-weight, heart failure, and heart attacks, all of which are higher in African Americans, the incidence of atrial fibrillation is surprisingly lower.

Atrial Fibrillation In African AmericansAfrican Americans were also less likely to be aware they have A Fib, and much less likely to be treated with blood thinners like warfarin (Coumadin, Jantoven) that prevent the heart attacks and strokes that having A Fib causes.   Even more surprising was this decreased use of warfarin in African Americans was regardless of whether the person had insurance or made more money.   It is truly stunning that a medication to prevent strokes is used LESS in a group of people who are prone to have MORE strokes and this was found in a study by Meschia and colleagues who looked at over 30,000 patients:

“We also found that among those who were aware that they had AF (atrial fibrillation) and who had confirmation of the diagnosis of AF, (African Americans) were about one quarter as likely to be treated with warfarin as whites. In striking contrast, risk of stroke as stratified by the CHADS2 score was not a predictor of warfarin use. The fact that risk of future stroke did not significantly alter the likelihood of warfarin use would seem to reflect an evidence-practice gap.”

A Higher Risk for Death

The risk for death in the presence of atrial fibrillation (A Fib) in the first four months after diagnosis was very high with heart disease, heart failure and stroke accounting for the most of the deaths, the study also found.  The risk for hospitalization in African Americans from atrial fibrillation doubled as did the risk for recurrent stroke, and related dementia from repeated “little strokes” (multi-infarct dementia).

What is the Best Medication for A Fib?

So the medical evidence would suggest that African Americans should receive MORE treatment with blood thinning medications like warfarin and other newer medications like dabigatran (Pradaxa), rivaroxaban (Xarelto), or apixaban (Eliquis) . . . and in fact they receive LESS.

Some of the complaints about warfarin is the need to have relatively frequent blood tests to confirm the “thin-ness” of your blood.  These tests called “PT / INR” shoots for an INR between 2.0 and 3.0.  Less than 2.0 means your blood is “too thick” and more than 3.0 means it is “too thin.”  The newer medications to replace warfarin do not need blood tests.

Keep in mind that African Americans have an increased risk for complications from bleeding on some of these newer medications like dabigatran (Pradaxa), rivaroxaban (Xarelto), or apixaban (Eliquis), so although it can be more inconvenient with frequent blood draws, warfarin may be best for now until more information is available. There is also significant evidence that there are warfarin dosing differences between European Americans and African Americans that need to be anticipated and considered.

What You Need to Know . . .

While this topic may seem a little confusing, here are the main points:

  1. If you have atrial fibrillation (A Fib), you are at a much greater risk for stroke or another major event.
  2. Being on a blood thinner, like warfarin, can significantly decrease your risk for stroke (or another event).
  3. Being on a blood thinner increases your risk for bleeding . . . but not as much as it decreases your risk for stroke. So while you risk a bleed, your risk for stroke is much higher.
  4. The newer “blood thinners” do not require as many lab tests as warfarin, but they also may not be as safe in African Americans (this is controversial and not clear).

Here is a video on anticoagulation and warfarin:

 

The Tuskegee Syphilis Study

Tuskegee Syphilis StudyThe Tuskegee Syphilis Study (originally called “Tuskegee Study of Untreated Syphilis in the Negro Male”) was originally formed to record the natural history of syphilis with the hope of justifying the funding of public treatment programs for African Americans. The study, which began in 1932, included 600 African American men, 399 with syphilis and 201 without. While the study was originally slated to last 6 months, it was extended for over 40 years. Central to the study was the patient’s lack of informed consent.  None of the patients were told they had syphilis, instead they were told they had “bad blood” that required monitoring.  In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance.  Many physicians, including African Americans, and national physician societies, fully supported the study.

Betrayed Trust & Conspiracy

Tuskegee Syphilis StudyDuring the study, researchers not only allowed the disease to progress, but actively blocked the men from receiving curable treatment, not just from the study physicians, but also from other community physicians.   The researchers implemented a coordinated effort . . . a verified conspiracy, with area physicians and hospitals to actively block treatment if they presented elsewhere for care. Needless to say, the study required the widespread communication of personal health information across an entire region and involving hundreds of people.  The names and a stigmatizing diagnosis were circulated widely, and in a way that the patient would not know. The fact that nearly 400 African American men were denied effective treatment for syphilis without their knowledge or consent so that researchers could document the natural history of the disease, stands as a singular event that largely validates the mistrust African Americans have against the medical establishment.

Tuskegee Syphilis Study40 Years Later . . .

It wasn’t until 1972, when a news article reported the study, that a government review panel finally halted it. The Tuskegee Health Benefit Program was established as a settlement for the class action suit brought against the United States. The US agreed to pay all medical and burial expenses for the subjects involved, with added support for their families. During the course of the study, 40 wives contracted the disease and 19 children were born with congenital syphilis.  Many credit the Tuskegee Syphilis Study as the main reason informed consent regulations exist today.  For many African Americans, the study is the perfect example for why to not trust public health, medical research, or healthcare.

The Apology

In 1996, a formal apology was issued by the US government and the survivors were invited to the Oval Office by President Clinton.

Tuskegee Syphilis Study

Some argue that with time the Tuskegee Syphilis Study is merely a distant historical event for most African Americans.  A study done at Johns Hopkins looked at awareness of the Tuskegee Syphilis Study and found an overwhelming number of African Americans (81%) were aware of the study and outcomes, while only 28 percent of European Americans had knowledge of the study. With widespread knowledge of this government-sanctioned and funded study within the African American community, mentioning the study as a way to stimulate discussion, and build trust, is a preferable approach to ignoring its existence.

Historical Reasons for African American Distrust of Doctors

Historical Reasons for African American Distrust of Doctors

Stephen Kenny, University of Liverpool

The history of human experimentation is as old as the practice of medicine and in the modern era has always targeted disadvantaged, marginalized, institutionalized, stigmatized and vulnerable populations: prisoners, the condemned, orphans, the mentally ill, students, the poor, women, the disabled, children, peoples of color, indigenous peoples and the enslaved.

Human subject research is evident wherever physicians, technicians, pharmaceutical companies (and others) are trialling new practices and implementing the latest diagnostic and therapeutic agents and procedures. And the American South in the days of slavery was no different – and for those looking for easy targets, black slave bodies were easy to come by.

Black bodies in the slave south

There is a rich and rapidly expanding scholarly literature examining the history of human subject research, including studies of the burgeoning bio-medical economy in the US in the 20th century. The Tuskegee experiment and other episodes of medical racism all feature prominently.

The history of the acquisition and exploitation of slave bodies for medical education and research in the US, first explored in depth by historians James Breeden and Todd Savitt, focused primarily on medical schools and the traffic in slave bodies in Virginia. Savitt’s work drew attention to professional medicine’s use of slaves in classroom and bedside demonstrations, in operating amphitheatres, and experimental facilities.

Slave Village
By Wesleyan Juvenile Offering – https://archive.org/details/wesleyanjuvenil07socigoog, Public Domain, https://commons.wikimedia.org/w/index.php?curid=44910848

Savitt argued that African Americans were easy targets for ambitious and entrepreneurial white physicians in the slave south. Slaves, as human commodities, were readily transformed into a medical resource, easily accessible as empirical test subjects, “voiceless” and rendered “medically incompetent” through the combined power and authority of the enslaver and their employee, the white physician. Savitt suggested that “outright experimentation upon living humans may have occurred more openly and perhaps more often owing to the nature of slave society,” and also that “the situation may have been (and probably was) worse in the Deep South.”

Power and opportunism

When an elite white enslaver-physician, Charlestonian Elias S. Bennett, published notes recalling the case of a truly extraordinary tumour afflicting a young female slave on the family’s James Island plantation, his narrative revealed much about the opportunities for human subject research under American slavery.

Bennett recalled an unnamed female patient-subject who had developed “a small tumour the size of a ten cent piece” behind her right ear when she was just four weeks old. In 1817, when Bennett was training to become a doctor and “anxious to perform an operation”, he, together with a fellow physician-apprentice, made a disastrously crude surgical attempt to explore and remove this growth.

In an era prior to anaesthesia and asepsis, this type of surgical intervention was extremely dangerous – especially when undertaken by two unsupervised medical apprentices – who took liberty of an opportunity presented by an extremely vulnerable enslaved child. As Bennett remembered, the child suffered a great deal of “inflammation” as a result, and only “by very close attention” did she recover “in six to eight weeks” – the plantation/labour camp’s seclusion providing perfect cover for what would prove to be a major medical blunder.

‘Unknown enslaved sufferer’. Waring Historical Library, Charleston

Bennett’s crude interference with the tumour, which may have been in a lymph node, was the cause of a severe inflammatory reaction and sudden excessive growth of the lesion. In 1821, when the child was six, Bennett described the tumour as being about the size of an ostrich egg, while in the years immediately prior to her death, his narrative reported that the tumour increased to an enormous, indeed “extraordinary” size. The case report concludes with an post-mortem analysis, or, as Bennett noted in a ghoulish tone, “an imperfect outline of the results furnished by the examination of the tumour, when I obtained the head, or at least so much of it as remained.”

The remains of the enslaved girl’s skull became a pathological specimen in the University of Maryland’s medical museum collection.

Dark medicine: cash for ‘negros’

All of the key training, networks and power bases of southern medicine —apprenticeships, private practice, colleges, hospitals, journals, and societies —operated through slavery’s ruthless traffic and exploitation of black bodies. White medical students, as a matter of course, expected education and training based on the observation, dissection and experimental treatment of black bodies.

White doctors, including those in remote rural locations, routinely sent reports of experiments on slave subjects to medical journals and trafficked black bodies to medical colleges. Medical museums openly solicited black body parts and medical societies relied on black bodies. Students too wrote graduating theses based on the medical manipulation of black “subjects” and “specimens”.

Lucinda. Waring Historical Library, Charleston

Under slavery, there was also an extensive network of specialist “negro hospitals”. The grimmest of slavery’s institutions, these hospitals were often sites of risky medical research and were closely linked to “negro traders” anxious to patch up their “stock” for sale. Large numbers of individual doctors routinely advertised in southern newspapers that they would pay cash for black people suffering from chronic disease. The fate of these trafficked medical subjects, of course, assumed the very worst possibilities.

Slaves were generally unable to prevent treatments chosen by their owners and physicians could take enormous risks with the lives of these patients. Those risks were all the greater when doctors were also the owners of the enslaved patients. The opportunities presented by the system of chattel slavery meant that white doctors had at hand an easily accessible population upon which they could execute experimental research programs and develop new tools, techniques and medicines.

White racist attitudes, the enormous traffic in human chattel, and the slave regime rationalised and normalised the use and abuse of black bodies. Human subject research under American slavery was ultimately nothing unusual. In the context of a society defined by dehumanisation, impoverishment, violent punishment, incarceration, a vigorous trade in human property, racialisation and sexual interference, it should come as no surprise that human experimentation and the exploitation of enslaved bodies was a frequent, widespread and indeed commonplace feature of medical encounters between physicians and slaves. That was the culture of American slavery and every day slave patients faced appalling dangers.

Click here to read more articles in The Conversation’s series On Human Experiments.

Stephen Kenny, Lecturer in 19th and 20th-century North American History, University of Liverpool

This article was originally published on The Conversation. Read the original article.