by: Anita Sulaiman | Principal Consultant and Trainer at IBEX Consulting
What does every one of us need – regardless of age, race, gender, religion or nationality? Healthcare. One of the biggest and most enduring challenges in healthcare is the issue of provider stigma and bias, and their impact on patient outcomes. We all need healthcare, but we do not all have the same access to quality care.
Stigma (defined as a powerful social process that is characterized by labeling, stereotyping and separation, leading to status loss and discrimination, in a context of power) drives morbidity and mortality1,2. An individual labeled or stereotyped is devalued. The resulting bias contributes to discrimination. It is a fundamental cause of population health inequalities.
Merriam-Webster defines stigma as a mark of shame or discredit. This mark is a distinguishing characteristic, such as mental illness, that is viewed negatively. Shame associated with it creates significant obstacles to equitable care. The shame that stigmatized individuals are subjected to is a power dynamic. To combat stigma, health interventions must address this social factor as well as the immanent power play. Failure to fully appreciate its importance undermines their efficacy.
Stigmatized statuses and the relationship of bias to education
Examples of stigmatized statuses include minority/proscribed sexual orientation*, minority race/ethnicity, obesity, disability, substance abuse disorder (SUD), HIV/AIDS, diabetes and now COVID-19. * Did you know that 16 states in the US still have sodomy laws?
Consider obesity: according to the Centers for Disease Control and Prevention, 42.4% of adults 20 years and older are obese (2017 – 2018). A 2015 review of the empirical literature on weight bias in healthcare concluded that many healthcare providers held strong negative attitudes and stereotypes about people with obesity. Such attitudes influence person-perceptions, judgment, interpersonal behavior and decision-making. One finding is that physicians tend to spend less time in appointments with patients who are overweight3.
How educational institutions prepare physicians play a part. Education on obesity in undergraduate and graduate medical education is inadequate; even more so on weight bias and stigma and its impact on the health of individuals who struggle with obesity4.
Two recent studies indicated that weight bias among medical professionals dated back to their undergraduate years3. Study authors concluded, “These results suggest that interventions targeting weight bias among students and healthcare trainees may be warranted”. Medical programs can better equip physicians by closing this gap. With 4 out of 10 Americans qualifying as obese, improvements in the efficacy of public health programs focused on obesity prevention and reduction have the potential to benefit well over a third of Americans. The same logic applies to other stigmatized statuses.
Additionally, there is also a “hidden curriculum” that is learned early on in training – a socialization process outside of formal lessons. Hidden curriculum messages abound, such as accepting being overworked and that seeking help for mental health struggles is not okay. Schools and facilities need to be deliberate about addressing this aspect of the learning environment for medical students and trainees. The biggest challenge is it is hidden; the first step, therefore, is to expose it.
Dennis Rosen, MD, a pediatric pulmonologist at Boston Children’s Hospital and Assistant Professor of Pediatrics at Harvard Medical School explained that physicians, like everybody else, use heuristics – decision-making shortcuts. The problem is some heuristics guiding clinical decision-making are based on personal bias. They predispose us to certain behaviors and choices.
Implicit bias, which practitioners are unaware of, and explicit bias, which they are aware of, can influence the choice of treatments offered to patients. Bias can ultimately lead to the provision of substandard care to some patients compared with others with the same clinical presentation5. Because heuristics are unconscious and reinforced by repetition, they can be difficult to overcome once they are ingrained.
The recipients of the discriminatory behavior, on the other hand, are typically fully aware of the unconscious attitudes of these biases. In many cases, two or more stigmatized statuses intersect (e.g. race-related and substance use stigma), increasing the likelihood of discrimination and compounding the burden on the individual. A common complaint among members of stigmatized groups is that they are not taken seriously or are made to feel uncomfortable. When a person feels disrespected or experiences discomfort, they lose trust and disengage. Trust once lost is difficult to regain.
Various factors contribute to stigma, including negative attitudes or beliefs, fear and lack of awareness. Providers may fear infection, mortality or behavior associated with a condition or group. Institutional policies and practices (e.g. having a separate window at a facility’s pharmacy for HIV patients to pick up medication) can also be drivers, at the organizational level. When some groups receive unequal treatment, this drives disparities.
The Washington State Diversity and Equity Project – a study released in October 2019 – showed higher rates of smoking, disability and poorer mental health among LGBTQ individuals than their heterosexual counterparts. The first of its kind to examine LGBTQ people of all ages across the state, it included a supplementary community-based survey focused on economic and social inequities, which revealed significant rates of discrimination, trauma and barriers to healthcare and other services among the approximately 1,800 adults surveyed6.
Overall, the data showed greater challenges for transgender, bisexual and queer people and racial/ethnic minorities. The implications are wide. These findings help highlight vulnerable populations that public health interventions need to pay special attention to.
Stigma is complex, occurring on many levels. There are three main inter-related types of stigma: structural, public and self-stigma, plus courtesy stigma (directed towards family and friends) and label avoidance7.
- Structural stigma: societal conditions, cultural norms and institutional practices that constrain the opportunities, resources and well-being for stigmatized populations.
- Public stigma: negative attitudes, beliefs and behaviors held within a community for the larger cultural context that comprises negative social norms.
- Self-stigma: the internalization of public stigma by a person with a condition, disorder or minority status.
All of the above influence the decision to seek help and impact health outcomes. Understanding this concept of what researchers term a “stigma complex” i.e. stigma as a multi-level, multi-dimensional phenomenon is key. It enables the identification of specific targets for change at each level. Sustainable change would require effective strategies at all levels where stigma can touch populations most at risk.
Stigma in a healthcare setting is particularly egregious
Everyone has a right, without distinction of any kind, to not be discriminated against. So important is this right that it is enshrined in Article 2 of the Universal Declaration of Human Rights. Being refused service at a restaurant does not have the same implications as not being able to get medical attention when you are sick, especially if you are in need of life-saving medical intervention. It could mean life or death. That is why stigma and bias matter in healthcare and is rightfully garnering increased attention.
Any health facility employee who has patient contact can stigmatize. For this reason, education and other stigma reduction efforts need to reach all employees. Often, however, they do not. It is important that interventions involve all cadres of healthcare workers. Every possible point of encounter with patients, or what I call (to borrow from Marketing) Moment of Truth, must be taken into account to ensure a seamless, effective, culturally appropriate delivery.
I emphasize seamless because most patient appointments involve more than one area of a facility. A positive patient experience means the patient’s needs are met in every part of the entire encounter. For health facilities, this means addressing stigma and bias at the system level. I would advocate for a culture of zero tolerance toward stigma. Imagine a healthcare world without stigma and bias. That is the goal.
Looming mental health crisis
Stigma disempowers. In a health system, provider stigma compromises access to diagnosis, treatment and successful health outcomes. Just as concerning is its impact on healthcare workers living with stigmatized conditions. Like patients, they too may conceal their own health status. Fearing discrimination, they may be reluctant to access needed care8.
On July 11, The New York Times published the harrowing story of Dr Lorna M Breen, in an article titled, “I couldn’t do anything: The virus and an E.R. Doctor’s Suicide”. A “consummate overachiever”, Dr Breen, 49, who studied both emergency and internal medicine, was managing the busy emergency department at New York-Presbyterian Allen Hospital in Upper Manhattan while also in a dual degree master’s program at Cornell University. Brilliant and full of zest, she was known to be unflappable.
Then the pandemic hit and the structure that held her life together crumbled. She started working long days that bled from one into another, at both the Allen and the main Columbia medical campus. Even after contracting COVID-19 herself, she pushed on as much as was humanly possible. Their already over-burdened facility was inundated by constant streams of severely sick people and the bodies kept piling up. “I’m drowning right now.” Those were her words to her Bible study group that she was actively involved with. Still, she soldiered on. Used to toughing it out, she kept doing her best to keep up with the overwhelming demands and relentless schedule.
When she finally called her sister for help on April 9, Dr Breen was not herself. Her eyes had dulled and she did not speak unless questioned, giving only one or two-word answers. When asked if she wanted to hurt herself, she indicated yes. She was terribly embarrassed because “she had suffered a breakdown when the city was desperate for heroes. And she was certain her career would not survive it”.
Dr Breen was admitted for 11 days into the psychiatric ward. Upon discharge, her condition seemed to have improved and family members were optimistic enough that they talked about getting her back to New York. But on April 26, less than three weeks from the day she reached out, Dr Breen killed herself.
This tragedy shined a spotlight on the pressures that can be crippling to doctors and an unspoken truth among them, particularly emergency physicians. “If Dr Breen is lionized along the legions of other health care workers who gave so much – maybe too much – of themselves, then her shattered family also wants her to be saluted for exposing something more difficult to acknowledge: the culture within the medical community that makes suffering easy to overlook or hide; the trauma that doctors comfortably diagnose, but are reluctant to personally reveal, for fear of ruining their careers.”9
Dr Breen may be alive today had the culture been different. In the age of the novel coronavirus, her untimely demise underscores the urgency of the need for change. As the pandemic drags on, the survival of the people society has conferred hero status on will increasingly depend on the health system’s ability to create an ecosystem more supportive of provider health.
Mental illness is a condition that afflicts millions of Americans every year. If you are suffering from it, you are not alone. 1 in 5 adults experience mental illness. 1 in 25 adults experience serious mental illness. Among youths (aged 6 to 17), 1 in 6 experience a mental health disorder. Suicide is the 2nd leading cause of death among people aged 10 to 3410.
Despite its prevalence and the pressing need, the stigma attached to mental health is pervasive and firmly entrenched. Public attitudes are slowly shifting. However, mental illness remains a barrier to full participation in society and those with the condition continue to struggle with how they and their illness are perceived, not just by their providers but also by society.
In implementing change, language, although seemingly innocuous, makes a difference. Language reflects attitudes. Fortunately, healthcare facilities are beginning to understand its role in perpetuating stigma and how it can help transform an organization’s culture – from discriminatory to inclusive.
More and more, for example, are favoring “first person” language, moving from terms like “drug abuser”, which implies that the person is the problem to “person with substance abuse disorder”, which recognizes – appropriately – that the person has a problem that can be addressed. Another example is using “person with/being treated for schizophrenia” versus “schizophrenic”. Stigmatizing language looks at the person as a condition, when the condition is only a part of the person; it does not define them.
Psychological fallout of the pandemic
The issue of stigma is a weighty one, particularly in light of the current pandemic. Since the first U.S. reported case of the coronavirus, SARS-coV-2, in January, it has spread like wildfire across the country, infecting over 5.4 million and killing over 170,000 people to date. According to CDC Director, Robert Redfield, in a piece in the Washington Post on June 25, 2020 titled, “CDC Chief says coronavirus cases may be 10 times higher than reported”, for every case confirmed, 10 more cases are unreported. The United States makes up about 26% of all cases worldwide. It is the biggest health threat of our time.
As part of their strategy to mitigate the risks and curb the spread, local and federal authorities issued public health and safety directives, which, while necessary, are having short and long term behavioral health consequences as people’s well-being are increasingly affected by extended stay-at-home orders and social distancing.
In May, Mental Health America conducted an online mental health screening on over 211,000 participants11. Results were staggering. Among other things, it revealed, since the start of the pandemic:
- At least 88,405 more cases of depression and anxiety than expected.
- In May, the per-day number of screenings for depression was 394% higher than in January; 370% higher than in January for anxiety.
- The health toll is more pronounced in young people (< 25). Roughly 9 in 10 had moderate-to-severe depression; 8 in 10 had moderate-to-severe anxiety.
- “Loneliness and isolation” is cited by the greatest percent of moderate-to-severe depression (73%) and anxiety (62%) screeners as contributing to mental health problems “right now.”
- More than 21,000 screeners contemplated suicide or self-harm on more than half of the days in May. Nearly 12,000 had these thoughts almost daily.
- LGBTQ individuals, caregivers, students, veterans/active duty military personnel, and those with chronic health conditions are disproportionately impacted.
“These numbers are just so striking. When you consider that a total 45,000 to 50,000 Americans die by suicide every year and nearly half that number reported suicidal or self-harm thinking in just May alone, this has to be a wake-up call to policymakers to act now to prevent this,” commented MHA President and CEO, Paul Gionfriddo.
Sexual and gender minorities at greater risk, especially in a pandemic
Numerous research have shown that sexual and gender minorities experience greater health disparities than the rest of the population. They are also more likely to have underlying health conditions and risk factors for respiratory illness that increase their risk for COVID-19, the disease caused by the new coronavirus. Some sexual gender minorities living with HIV, for instance, are experiencing lapses in treatment and difficulty restarting care. With most hospitals adjusting resources to cope with the COVID-19 surge, health-affirming care such as monitoring of viral load and resistance development tests have had to be postponed, putting some at risk of additional complications from COVID-1912.
With bias influencing care decisions for LGBTQ communities, trust is an issue. Trust has a direct impact on communication, which is critical to the provider-patient relationship – the heart of medicine. Once mistrust sets in, inherently, patient safety is compromised.
“My friends and I have experienced that as soon as you identify as a gay man with a non-gay provider, the subject of HIV/STD is brought up, no matter your reason for the visit. You could be there for a cold and you would be asked to do these tests. I find it offensive. It is why I choose to go to an openly gay provider. They treat us as a whole person and not just a sexuality. We need more diversity and informed providers, so that people are treated with respect and can have trust in the care they receive,” says Daren Wade, a student services professional in Seattle.
Members of stigmatized communities need culturally competent providers who are sensitive to their unique needs and situation. In my capacity as a culture consultant, I have found organizational cultural competency assessments very useful in identifying gaps and weaknesses in serving diverse populations. Findings from these initiatives can inform management as they formulate future strategies.
Stigma is based on social contracts – unwritten agreements that people abide by. They can be undone. The binary way we see gender is already changing. Health facilities have an opportunity to play a significant role in institutionalizing affirming precepts – for all stigmatized statuses.
Barriers to care worsen COVID-19’s impact
Barriers to care add additional layers of risk. Especially in these unprecedented times, when so many lives are in danger and the need for quality care is greater than ever, it is imperative that health administrators put their best resources toward reducing and eliminating these obstacles to equitable medical care.
Some examples of barriers are:
- Lack of respectful, identity-affirming medical care (e.g. respecting pronouns)
- Medical mistrust due to experiences with and fear of discrimination
- Lack of insurance and inability to afford medical care
- Lack of access to affirming mental healthcare and psychotherapy
- Variable state-by-state protections for sexual and gender minorities, including healthcare non-discrimination protections
- Lack of paid sick leave
- Reduced help-seeking and access to preventative care given the barriers above that may lead to a lack of testing and early intervention12
Stigma is a public health threat
Stigma is a threat to public health. It influences health outcomes in many ways, carving pathways to health disparities. Today, health experts and authorities are at the forefront working closely with local and federal governments. With health workers becoming frontline workers, overcoming the issue of access to quality care becomes crucial. Given its wide-ranging impact, equally critical is the issue of stigma. Either the motivation to stigmatize or the power to carry out that motivation must be appropriately addressed2.
Now, more than ever, greater attention needs to be paid to this social determinant to ensure the success of future improvement efforts in disrupting the processes that adversely impact patient outcomes. Too much is at stake.
Much can and must be done. The silver lining in all this is that health professionals everywhere, and the institutions that they are a part of, are pushing for the needed changes. Something good may yet come from the current crisis, if stigma and bias, and the corollary axes of disempowerment, are adequately addressed. There certainly is added urgency. Priorities are converging. Momentum is building.
ABOUT THE AUTHOR:
Anita Sulaiman is Principal Consultant and Trainer at IBEX Consulting. Her extensive international experience and professional background span public and private sectors, for-profit and not-for-profit enterprises, in industries including aviation/aerospace, healthcare, electronics, retail, manufacturing, hospitality, military/defense and government across 7 countries. Her areas of expertise are strategy, leadership development, marketing and change management/business process re-engineering. Anita is also a culture coach specializing in cultural competency and cross-cultural communication. Helping individuals and organizations excel in a global world is a passion. Anita began her career as a management consultant, spearheading organizational transformation initiatives in multi-national corporations for Alexander Proudfoot and REL – global leaders in productivity, quality, and working capital management. This systems background enabled her to take the management of linguistic services at Swedish Medical Center to a new level. She has since helped various healthcare institutions in Washington and other states identify barriers to equal access and formulate strategies to better serve diverse communities. Anita has continued to stay at the forefront of efforts to improve patient safety, serving on advisory groups and committees for organizations including the Washington Patient Safety Coalition, Foundation for Health Care Quality (Patient & Family Advisory Council) and Washington State Coalition for Language Access. She is Chair of the Addressing Stigma and Bias Workgroup, a partnership between WPSC and the Bree Collaborative, a healthcare non-profit established by the Washington State Legislature. Anita graduated with a Bachelor of Business in Business Administration from the Royal Melbourne Institute of Technology in Australia. She is fluent in Bahasa Indonesia and Malay; and speaks basic Mandarin (Chinese). Anita is happiest when her work involves building bridges – between people, cultures, organizations and countries.
- Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Soc. 2001;27(1).
- Hatzenbuehler et al. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health. 2013;103(2).
- Rita Ruben, MA. Addressing medicine’s bias against patients with obesity. JAMA. 2019;321(10):925-927.doi:10.1001/jama.2019.0048.
- Fatima Cody. Harvard Health Publishing. Harvard Medical School. 2019, April 3. Addressing weight bias in medicine. Retrieved from https://www.health.harvard.edu/blog/addressing-weight-bias-in-medicine-2019040316319
- Rosen D. 2014, November 23. How bias and stigma undermine healthcare. Retrieved from https://holisticprimarycare.net
- UW News. 2019, October 4. Health disparities, strong social support among state’s LGBTQ community. https://www.washington.edu/news/2019/10/04/health-disparities-strong-social-support-among-states-lgbtq-community/
- National Academies of Sciences, Engineering and Medicine 2016. Ending discrimination against people with mental and substance abuse disorders: The evidence for stigma change. Washington DC: The National Academies Press. https://doi.org/10.17226/23442.
- Nyblade et al. Stigma in health facilities: why it matters and how we change it. BMC Medicine. 2019;17(25)
- The New York Times. 2020, July 11. I couldn’t do anything: The virus and an E.R. doctor’s suicide. Retrieved from https://www.nytimes.com/2020/07/11/nyregion/lorna-breen-suicide-coronavirus.html
- National Alliance on Mental Illness. Mental health by the numbers. Retrieved from https://www.nami.org/mstats
- 2020. Mental Health America releases May 2020 screening data; 88,000 have anxiety or depression and results point to possible epidemic of suicide ideation. Retrieved from https://www.mhanational.org
- American Psychological Association. 2020, June 29. How COVID-19 impacts sexual and gender minorities. Retrieved from https://www.apa.org/topics/covid-19/sexual-gender-minorities