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The silent shame of medical stigma

It is an old problem in medical care — and human life. The stigma of some human conditions — weight gain, mental health, substance abuse, and now monkey pox, to name a few — brings shame.  And shame brings silence. And silence makes it hard for those who need help to get it. 

As modern societies and health care workers struggle to eliminate unacceptable inequities of many different kinds, stigmatization is gaining increased attention.

So let’s spend a little quiet time with stigma: why it hurts, how to make it better. In this newsletter, five things we all need to know — for ourselves, our loved ones, and our society.

Photo credit: detail from Auguste Rodin, The Burghers of Calais, Rodin Museum, Philadelphia.

1. Stigmatization is the name for a major scourge in medical & mental health care

In ancient Greece, people who were regarded as shameful, disgraceful, or requiring punishment — including slaves, prisoners, and traitors — were tattooed or marked, so they would be avoided. Their body signs were called stigma, or stigmata in the plural.

The religious recognize these terms, too, because they also have been associated (quoting an encyclopedia definition) with “bodily marks, scars, or pains corresponding to those of the crucified Jesus Christ — that is, on the hands, on the feet, near the heart, and sometimes on the head (from the crown of thorns) or shoulders and back (from carrying the cross and scourging).”

In health terms, stigmatization refers to sharply negative attitudes toward or beliefs about those with illness, injury, or marked physical or mental differences. This wrongful thinking, experts say, manifests itself in ugly behaviors — discrimination by race, gender, and sexual orientation, as well as other ways of abusing others in speech and action. As the federal Centers for Disease Control and Prevention explains on its website:

“Stigma is discrimination against an identifiable group of people, a place, or a nation. Stigma is associated with a lack of knowledge about how [for example, disease] spreads, a need to blame someone, fears about disease and death, and gossip that spreads rumors and myths.”

This isn’t abstract or esoteric stuff. During the pandemic, for example, hate crimes against Americans of Asian descent spiked as the ignorant and outspoken associated the coronavirus’s lethal effects with the mere happenstance of where the disease was first identified (in Asia). This prompted the unbalanced to physically attack and make derogatory remarks against Asian Americans in record numbers. When doctors first began to diagnose HIV-AIDS cases, some medical professionals and health care facilities declined to treat infected patients, and many of the sick, particularly those with the related, visible Kaposi’s sarcoma,  were forced out of housing and out of public sight. Now, public health officials have walked a tightrope in battling the Western outbreak of monkeypox, seeking to avoid negative views about a disease that has been more prevalent in Africa and its current, most common means of transmission — chiefly among men who have sex with other men and with multiple partners.

Photo credit: Edvard Munch, Melancholy, Børre Høstland/Lathion, Jacques, Nasjonalmuseet (National Museum of Norway)

2. Where do biases come from?

Human beliefs and behaviors aren’t always easy to explain, deal with or alter. When people stigmatize others due to disease or injury, however, mental health experts have research-based theories about why those with certain conditions suffer opprobrium while others do not.

In more backward times, people stigmatized the sick or injured — both inside and outside their tribal societies — not only because they were afraid and ignorant but also as a crude self-protection against outsiders’ contagions and the harms that uninformed individuals believed were associated with others’ injuries.

Stigmatization also provides insights into baser parts of ourselves and our character: We reject in others what we fear or dislike in ourselves, experts say. This can be oversimplified, and it is hard to shorthand the complexities of people’s thinking.

But experts say that we worry, for example, that others think us lazy, undisciplined, and fat, so we point at others carrying excess weight and deride their problem as a major deficiency. We “fat shame” them.

We do not want to be thought of as weak, so we abhor weakness in others, shunning those we think are “feeble” because they have mental illnesses or chronic conditions like cancer. We put such a high value on skin-deep beauty that we recoil at those disfigured by injury or those with scarring diseases like leprosy or illnesses like monkeypox that can cause pustules to erupt all over the face, hands, and body.

We hold our own character at such heights that we hold in contempt those we blame for having personal failings that result in substance abuse, not accounting for the debilitating and addictive qualities of drugs and alcohol.

3. Stigma can cause real damage

Stigmatization may seem like a big word, but as experts study it, the term only begins to describe significant harms to those who suffer it, particularly when it comes to treating their medical and mental health needs.

As one medical journal article described the problem:

“[S]tigma [when it occurs] in health facilities is particularly egregious, negatively affecting people seeking health services at a time when they are at their most vulnerable. In health facilities, the manifestations of stigma are widely documented, ranging from outright denial of care, provision of sub-standard care, physical and verbal abuse, to more subtle forms, such as making certain people wait longer or passing their care off to junior colleagues. As a result, stigma is a barrier to care for people seeking services for disease prevention, treatment of acute or chronic conditions, or support to maintain a healthy quality of life. Within the health system, stigma towards a person living with a specific disease undermines access to diagnosis, treatment, and successful health outcomes.”

The American Psychiatric Association reported this:

“Stigma and discrimination can contribute to worsening symptoms and reduced likelihood of getting treatment. A recent extensive review of research found that self-stigma leads to negative effects on recovery among people diagnosed with severe mental illnesses. Effects can include: reduced hope, lower self-esteem, increased psychiatric symptoms, difficulties with social relationships, reduced likelihood of staying with treatment, [and] more difficulties at work. A 2017 study involving more than 200 individuals with mental illness over a period of two years found that greater self-stigma was associated with poorer recovery from mental illness after one and two years … Some of the other harmful effects of stigma can include: Reluctance to seek help or treatment and less likely to stay with treatment; social isolation; lack of understanding by family, friends, coworkers, or others; fewer opportunities for work, school or social activities or trouble finding housing; bullying, physical violence, or harassment; health insurance that doesn’t adequately cover your … treatment; [and] the belief that you’ll never succeed at certain challenges or that you can’t improve your situation.”

4. History shows how negative views shift

History shows that public attitudes about diseases and injuries can change significantly — mostly for the better. Consider:

§ How backward the ancient animus towards leprosy now seems;  by the late 1950s, it became a plot point in the award-winning religious-themed movie “Ben Hur.”

§ How odd it would be if someone fell asleep during Ronald Reagan’s presidency and remembered only the cruel, isolating, and widely held negative views about HIV-AIDS so prevalent then. The person now would be startled to see the array of Big Pharma ads splashed on broadcast TV now for prescription pre-exposure prophylaxis or PrEP drugs.

§ Travelers to other countries — including China, Japan, Singapore, Spain, Greece, and Italy — are finding that, slowly, longstanding practices are giving way, so that doctors inform patients with stigmatized chronic diseases like cancer that, yes, they have a serious illness. Sharing such information is not as common as it is in the United States. In this country, patients have the fundamental right to informed consent. This means they must be told clearly and fully all the important facts they need to make an intelligent decision about what treatments to have, where to get them, and from whom. In this country, the disapproving views of cancer have changed so much that important courts have held that in libel cases it no longer is a “loathsome disease” that damages reputations when reported. Still, doctors and patients must work harder to ensure that communication about the severity of the disease is clear to individuals and their loved ones.

§ Remarkably, some fundamental scientific advances — like antibiotics, germ theory, and vaccinations — have changed perceptions about contagions that once caused people to recoil. When would regular folks last recall a public speaker railing about the repugnance of someone with cholera, yellow fever, typhus, bubonic plague, or tuberculosis?  

Photo credit: National Library of Medicine, ‘Surviving & Thriving’ digital exhibition, HIV-AIDS protest at National Institutes of Health.

5. Words matter: Be educated, factual, and careful in thinking and talking about others

If you’re human, you’re imperfect. We all have blind spots in our thinking and behavior towards those with health and mental health conditions, experts say. But informing ourselves and talking through what we do and don’t know about illness, injury, and disability can be crucial in reducing stigma’s harms.

The psychiatrists’ association, which campaigns against inequitable treatment of those with mental illness, shares these suggestions that also can be generalized as to how to deal with stigmatization:

“Talk openly about mental health, such as sharing on social media. Educate yourself and others — respond to misperceptions or negative comments by sharing facts and experiences. Be conscious of language — remind people that words matter. Encourage equality between physical and mental illness — draw comparisons to how they would treat someone with cancer or diabetes. Show compassion for those with mental illness. Be honest about treatment — normalize mental health treatment, just like other health care treatment. Let the media know when they are using stigmatizing language presenting stories of mental illness in a stigmatizing way. Choose empowerment over shame.”

Read the published research on stigmatization of many different patients — those who have challenges with weight, skin disorders, substance abuse, chronic illness, disfigurement, infectious diseases — and humanistic insights emerge.

The way we use words really matters. Take suicide, for instance. We used to casually say that someone “committed suicide.” Then we recognized that most of those who die by their own volition aren’t really in control of their deadly impulses. So now the more accurate way to say it is that someone “died by suicide.”

These are not cliches, and not just a roster of what is “politically correct.” Once people understand what causes health conditions and realize that sufferers cannot fully control circumstances that lead to them, why blame and shame them? Will stigma ease for the overweight when researchers establish that obesity is a complex disease,? Or for substance abuse, that some drugs have walloping addictive powers and that these can underlie substance abuse?  Regular folks typically don’t ostracize those with strokes, pneumonia, or limb loss due to car wrecks. They see that bad things happen. They offer empathy, compassion, and kindness to those who suffer catastrophic illness or injury. Those are qualities that “better angels” surely can spread around, especially with an estimated 6 in 10 Americans living with chronic illness of some kind.

Photo credit: a medical exam as part of treatment involving staff of the federal Centers for Disease Control and Prevention. CDC.

U.S. medical system struggles to eradicate array of inequities

To serve well an increasingly diverse and demanding U.S. population, the nation’s medical care system must keep taking major steps to eliminate all manner of its existing inequities. The system, for example, must stamp out discrimination by race, gender, sexual orientation, religion, and economic standing.

This is crucial if, in the wealthiest country on the planet, health care becomes a right, not a privilege. It’s a huge challenge.

Our firm’s newsletter, for example, has discussed in greater detail how:

§ relentless health inequities require urgent redress for African Americans

§ it is  too easy to chronicle the many unacceptable ways that women are mistreated by the medical system.

The social turmoil associated with the George Floyd protests and the 2020-21 Black Lives Matter demonstrations from coast to coast have only added to the pressure for all institutions in this country, including in health care, to undertake desperately needed reforms.

Usha Lee McFarling, a Pulitzer Prize-winning reporter, and her employer, the science and medical news site Stat, have done commendable work, digging hard into the myriad ways that patients, clinicians, and researchers suffer from inequities in health care.

At a time when a nationwide shortage of doctors looms and patients and hospitals can’t find enough MDs of color, McFarling reported that black doctors “are forced out of training programs at far higher rates than white residents.” She described how orthopedics, despite efforts by some leaders in the field, persists as not only a “stubborn outlier” but also “the whitest specialty.” She has detailed how pulse oximeters, key devices that gained much attention during the coronavirus pandemic, have a built-in flaw that makes them less accurate and potentially harmful to patients with darker skin — and how black engineers are committed to remedying this design shortcoming.

Stat has published news articles, too, on the dearth of diversity in clinical trials and how this can undercut innovative treatment for women and people of color.

The site has detailed, including with opinion pieces from medical experts, how inequities affect care of monkeypox, the coronavirus, women’s reproductive diseases, organ transplantation, Alzheimer’s, and more.

McFarling has reported that a “landmark National Academies report ‘Unequal Treatment’ … 20 years ago examined how systemic racism leads to poorer medical care for people of color in the U.S.” But, she added, “STAT reported [in February] that little progress has been made to address the problems highlighted in the report, and that, despite a pandemic that reinforced the depth and reach of these inequities, complacency could still win out, or new crises, such as the current nursing shortage, could get in the way.”

Kedar Mate, a physician who leads the Boston-based Institute for Healthcare Improvement, which is pushing health care systems to reduce disparities in the populations they serve, told McFarling this:

“The big risk is that we’ll continue to admire the problem [of health inequity’ and won’t get to do anything about it.”

We have much work to do to ensure that U.S. patients get medical services that are safe, accessible, affordable, efficient, equitable, and excellent. 

Photo credit: Health care workers at all six Johns Hopkins hospitals gathered on June 5, 2020, as part of an event organized by White Coats for Black Lives. Johns Hopkins.

A battle for fairness for those disabled in body and brain

Stigmatization harms at least two other notable groups, worsening their health, health care, and well-being — people living with physical disabilities and those with intellectual and developmental disabilities.

The National Clearinghouse on Abuse in Later Life has posted online a worthy article about the big problems confronting the disabled, reporting:

“According to the Centers for Disease Control and Prevention (CDC), 61 million adults in the United States live with a disability. That’s roughly 26% of adults living in the United States. And yet, these numbers are likely a great underestimate. As Dr. Kathleen R. Bogart explains, individuals may be reluctant to identify as disabled. She writes: ‘In a series of studies, my colleagues and I conducted a survey of factors related to disability identity and disability pride. The first study surveyed 1,105 adults online. Of those people … 64% indicated they had any type of health condition or impairment. Of [those with] … health conditions, only 12% …agreed or strongly agreed that they considered themselves to be a person with a disability. Experiencing stigma was the strongest predictor of identifying as disabled.’ Throughout history, disabled people have been stigmatized. Disability has been linked to disease and helplessness, and in some cultures, disability is associated with ancestral curses.”

The article cites work by the University of Washington Healthy Aging and Physical Disability Rehabilitation Research and Training Center, explaining that the disabled are shunned, isolated, stereotyped, discriminated against, condescended to, shamed, blamed, and subjected to hate crimes and violence. They face difficulties with communication, as well as in transportation, public policies and programs affecting them, and in economic, social, and other factors that affect their equitable health care.

As for the issues affecting those with intellectual and developmental disabilities, Emily Hoetz has written an impassioned, research-based article posted on the site of the Association for Psychological Science, reporting this:

“Even before the pandemic … individuals with I/DDs—including attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, learning disabilities, seizures, developmental delays, and intellectual impairment (Bagcchi, 2020; Turner-Musa et al., 2020)—experienced pronounced health disparities (Scior et al., 2016), such as increased rates of cardiovascular disease, diabetes, epilepsy, and psychiatric conditions and decreased life expectancy relative to the general population (Krahn & Fox, 2014; Young-Southward et al., 2017). Perhaps unsurprisingly, during the pandemic, they experienced more severe illness, greater risk of hospitalization, and almost twice the case fatality rates (Turk et al., 2020).

“As a developmental psychologist and the sister of an autistic adult, I have witnessed firsthand the effects of stigma on the health of people with I/DDs. Health care stigma, including physician misinformation and bias, is a significant driver of negative health outcomes. Indeed, I have been privy to countless stories of doctors who have expressed preconceived biases, discomfort, or outdated knowledge about autism, and, as a result, deemed my sister too complex, dangerous, or challenging to treat. … stigma originates well before individuals with I/DDs step foot in their doctors’ offices. It can be traced back to a lifetime of experiences and accumulates to create health disparities (Krahn & Fox, 2014).”

Hoetz details the top-to-bottom changes that would benefit those with intellectual and developmental disabilities, including reforms in medical education and clinical treatment guidelines, as well as improvements and inclusive steps in research. Experts also must reach out with their experience, expertise, and knowledge to shift attitudes among the public.

Big reforms are needed for both the disabled and those with intellectual and developmental disability to ensure they get a fair shake at good health and appropriate health care.

Recent Health Care Blog Posts

Here are some recent posts on our patient safety blog that might interest you:

  • President Biden and congressional Democrats have embarked on a major political experiment, testing the public’s willingness to delay gratification on seeing big benefits of a landmark measure with important elements to improve their health and wellbeing. Is it more persuasive to regular folks that one political party is trying to tackle huge problems, or will relentless naysayers reap rewards for doing little or nothing? As a little more than four score days remain before important midterm elections, Democrats will be seeking to convince voters of the significance of the giant Inflation Reduction Act — aka the much-reduced Build Back Better legislative package originally proposed by President Biden.
  • UNOS, the independent medical network responsible for procuring and distributing human organs for transplants in this country, needs big changes because it is failing desperate patients, making screening errors, among other missteps, that have killed dozens of them and caused hundreds to develop procedure-related diseases.The U.S. Senate Finance Committee reviewed hundreds of thousands of pages of subpoenaed documents and other material and investigated the nation’s transplant network for 2½ years, assailing UNOS  for its operational and oversight laxity, the Washington Post reported
  • Patients may be reluctant to think ill of their doctors or to imagine that highly educated, rigorously trained professionals could mistreat or cause them harm. Doctors themselves know this picture is way too rosy for some of their colleagues. In a survey of 1,500 practicing MDs, all of whom voluntarily responded to an online questionnaire, Medscape — a web-based medical news source — reported this information about doctor misconduct: “Physicians tell us they’re seeing more frequent incidents of other doctors acting disrespectfully towards patients or coworkers, too casually about patient privacy, angrily or aggressively at work, and even sometimes criminally. Such behavior is still relatively uncommon, and many respondents say they are proud of the high standards of attitudes and behavior shown by fellow physicians.”
  • When seniors need full-time institutional care, or when the injured or debilitated require similar 24/7 attention, loved ones — and even friends — must take care to read and re-read any documents that nursing homes and other long-term care facilities shove before them to sign during the stressful admissions process. That’s because the owners and operators of the facilities soon may create a financial nightmare for the unwitting document signers, fueling what is the huge shame of the U.S. health care system: medical debt. Most regular folks might think that the financial obligations incurred in long-term care facilities rightly belong to the adult residents. They’re 21 and older, and unlike minor kids carted into urgent, or emergency rooms for treatment, the residents typically have, until their situations suddenly shift, been responsible, including legally, for their lives and personal business. But nursing homes have dragged into court “children, grandchildren, neighbors, and others, many with nearly no financial ties to residents or legal responsibility for their debts,” the independent Kaiser Health News service and NPR have reported.
  • Is it time for a glimmer of optimism about reducing at least one unacceptably high health care cost? Say hear, hear then, to the federal Food and Drug Administration’s removing the last regulatory block to consumers with mild to moderate hearing loss buying cheaper, easier to access, over-the-counter (OTC) hearing aids — potentially as soon as this fall. Hearing some fading Bronx cheers? Those may be for the regulators who plodded to potentially benefit tens of millions of folks, who were forking over $5,000 for pairs of medically prescribed devices that previously also required expensive attention of doctors and audiologists. Patients also were ripped for the costs of this care, which typically was not covered by traditional insurance or Medicare.
HERE’S TO A HEALTHY (REST OF) 2022!

Sincerely,

Patrick Malone
Patrick Malone & Associates

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