Tag: Case Management

Stop and consider if you, a family member, or someone you care about has experienced any of the following:

• Had pain, or the severity of that pain, devalued by a provider?
• Had a healthcare symptom, or severity of a symptom, dismissed by a provider?
• Had a healthcare symptom, or severity of a symptom, attributed to “too much stress or balancing too many priorities”?
• Had the presence, or severity of a behavioral health symptom (depression, anxiety, agitation, worry, insomnia), minimized by a provider?
• Been told that you’re overthinking symptoms because of being “in the biz”?
• Been interrupted by a provider while presenting symptoms
• Had a diagnosis and/or treatment delayed or deferred?
• Been told to stop self-diagnosing on the internet, OR
• Left a provider feeling that you weren’t safe, seen, heard, or valued?

If you’ve acknowledged any experience on this list, then Medical Gaslighting (MG) has gained unwelcome entry into your world. What started with Lyme disease, chronic illness and chronic fatigue syndrome, now spans every disease state. However, it is also evident that MG intersects directly with health equity, and is among the industry’s top priorities.

Definitions and Distinctions

Gaslighting involves psychological manipulation through inappropriate use of power and has long been associated with bullying. Consider the boss who invalidates an employee’s thoughts, feelings, or emotions by making that person question what was said, thought, or if any of the events that were experienced really happened. Logical rationale is questioned, as well as the individual’s mental sanity. MG is an extension of this behavior and counter to patient-inclusive and proactive care.

MG is not simply a difference of opinion or negative interaction with a practitioner. It involves physician (or practitioner) ignorance and a blatant misuse of power to disregard, dismissal, degrade, and devalue the patient, their family, or other decision-makers. These actions may occur verbally or non-verbally, as in the curt reply to a question posed, eye-rolling or grimacing. Patients may face chronic interruptions by the provider and not be permitted to present their symptoms fully. Worries about increased shortness of breath, chest pain, decreased endurance, or brain fog become trivialized and chalked up to stress. Concerns about decreased mobility or functionality are automatically associated with menopause or “normal” aging.

There may be documentation entered in a person’s electronic health record noting biased perspectives of a patient’s “chronic” or “repeated” visits to the provider, or even “drug-seeking” behaviors. Perhaps a patient’s unanswered questions about their health status prompt frustration and, thus, a more assertive presentation. The provider views this behavior as aggressive and documents it as such. Patients are made to feel powerless and guilty for their self-advocacy, and blamed for being engaged and motivated participants in their healthcare process. These dynamics can easily trigger a patient’s trauma experiences, and from any point in their lives.

Ethics, Evidence, and Equity Impact

MG involves the privilege of biomedical expertise over lived experience. The physician is often viewed as a revered spokesperson for the institution of medicine; this perspective provides them with an endowed power to pronounce which symptoms are real and which are not. The result is a refusal to listen to patients and appropriately diagnose their illness, with increased morbidity and mortality rates. There are massive fiscal, clinical, and human consequences from grossly delayed, poor, and incorrect treatment.

MG is counter to the ethical principles shared by all health professionals: autonomy, beneficence, fidelity, justice, and nonmaleficence. The evidence demonstrates the concerning escalation of MG’s ethical equity impact across populations, and specific to patient physical and psychological harm:

• 94% of patients note at least one experience of MG in their interactions with providers, with roughly 10% on multiple occasions
• Women and Persons of Color have the highest rates of maternal mortality with dismissal of symptoms or voiced concerns, and delay in treatment; this is often associated with systemic racism and bias by providers.
  • Black women die at a rate of 41.7%, American Indian and Alaska Native women at a rate of 28.3%, and White women at a rate of 13.4%.
• 66% of women are told (by providers) that their physical symptoms (e.g., headaches, shortness of breath, severe pain, excessive bleeding) were stress-related, or due to obesity
• Women are 4X more likely than men to have their physical symptoms attributed anxiety, depression, or stress.
• Diagnoses of cancer, heart disease, and other chronic illnesses in Women are often delayed by a minimum of 4 years compared to men.

Marginalized and minoritized populations experience a far higher incidence and prevalence of MG compared to other populations. Recent research validates how >50% of healthcare workers identified providers as more accepting of White patients who advocate for themselves than Persons of Color. Even when communicating the same messaging and in the same way (e.g., in-person), Whites are viewed as assertive while Persons of Color are more often assessed to be aggressive, and an immediate safety threat.

Data across these populations would fill several articles, but chew on these outcomes for now:

The LGBTQIA+ Community:

• 50% are more likely to have experienced MG vs. cisgender, heterosexual people.
• 40% had at least one negative experience or form of mistreatment from a health care provider in the past year

Individuals seeking Reproductive Health:

• 72% experienced MG by providers
• 57% were told their infertility was due to stress or anxiety
• 54% were told that gaining or losing weight would improve their fertility outcomes
• 37% of Women of Color were denied care for symptoms associated with cancers, blood clots, and other acute health issues.

Older Adults

• 45% felt their symptoms were dismissed or devalued by providers
• 54% were Women of Color

Ableism

There is a large data gap involving Ableism and MG. Ableism is the marginalization of disabled people according to their disability status. Individuals with visible and invisible disabilities are among the largest marginalized groups in the US. They face gross health inequities with poor outcomes and were officially designated by the National Institute on Minority Health and Health Disparities (NIMHD) as a health disparity population. Considerable literature speaks to the mandate for practitioner training, as well as ongoing care gaps, stigma, and discrimination faced by individuals. Yet, despite these realities and almost 25 years since passage of the 1990 Americans with Disabilities Act, systemic barriers to healthcare access are the norm versus the exception. While volumes of anecdotal data demonstrate the severity of these issues, frequent invalidation by practitioners remains a mandated area of focus for the research.

Long COVID

• 79% report negative interactions with providers
• 34% had symptoms dismissed
• 39% identified delays in treatment
  • 75% identified as Female
  • 22% identified as Male
  • 3% as other

Employing Ethical Equity Advocacy

Four critical steps will enhance effective management of MG by case managers and other health professionals.

First, Heed Established the Resources of Guidance: These evidence-based and industry-vetted resources guide how professionals step into their work. These resources span professional regulations and practice acts across all disciplines, organizational accreditations (e.g., CMS, NCQA, URAC, NQF, Joint Commission) and codes of ethics and professional conduct for individual certifications and credentials, as well as standards of practice for professional associations. My colleagues in case management should be particularly familiar with their professional codes of conduct (2023) through CCMC, CDMS, and CRCC and CMSA‘s Standards of Practice for Case Management (2022). All:

• Prioritize cultural humility and awareness
• Mandate a whole person assessment
• Promote health equity through every effort
• Heed integrity, worth of the person, and objectivity in all relationships
• Leverage ethical principles of autonomy, fidelity, beneficence, justice, and nonmalfeasance through every professional intervention and interaction.

Second, Promote Psychological Safety Using Trauma-Informed Care and Other Anti-Oppressive Practices: Implement use of Trauma-informed Care to set a space where patients, their families, and staff feel respected by, comfortable with, and confident of the care they receive, and by every member of the workforce. Every professional interaction should assure:

• Physical, psychological, and emotional safety
• Trust
• Choice
• Collaboration
• Empowerment

This action involves more than simply offering annual and mandatory employee continuing education on the topic, or other related content on microaggressions or implicit biases. Instead, professionals should always ask:

• Does the person fully understand your role?
• What are their provider preferences or choices?
• What name or pronouns they wish you to use?
• What types of accommodations might they need with respect to physical, cognitive, intellectual, or other disabilities?
• How will health literacy be assessed and addressed?
• Will information be provided in the patient’s primary language, whether written or electronic?
• Who does the patient want with them during the interview, assessment, examination, or test (if anyone)?
• Do they know how to use, update, or troubleshoot their digital device, specific EHR platforms, or apps?
• How do they understand their diagnosis?

Third, Employ Advocacy at the Macro, Meso, Micro Levels Practice: This domain spans policy, community/organizational, and population-based practices, such as:

• Advance professional state-specific CEU requirements for licensure renewal encompassing Anti-oppressive practices, trauma-informed care, intercultural effectiveness, bias management, microaggressions and other related themes.
• Advance and enforce Federal requirements by HHS, the Office for Civil Rights (OCR) and EEOC including the 2024 HHS Rights of Conscience Bill , EEOC Workplace Guidance to Prevent Harassment, and the HHS Health Equity Action Plan.
• Case managers can also refer to the work of CMSA’s DEIB Committee for guidance inclusive of the association’s Position Statement (2024) and upcoming resources to guide case management practice. These items will encompass a dedicated standard of practice, position paper, member library, and other deliverables.

Within organizations:

• Provide easy ways for patients and staff to anonymously report situations involving racism or discrimination 
• Examine policies to make sure they result in equitable outcomes
• Require coursework on bias and discrimination at professional schools, and 
• Ongoing performance metrics that address continuing education
• Ensure policies and procedures through Human Resources that enforce anti-discrimination practices, and are addressed through employee performance appraisals. Incentives and disincentives for heeding (or not heeding) these policies should also be consistently enforced.
• Have patient voices reflected through involvement on boards and organizational committees and with the ability to vote on decisions.

Fourth and most importantly, Model and Mentor: Maneuvering MG is not a “one and done” activity, especially amid the changing face of patient and workforce demographics. Nobody is an expert in this space. Any ethical, caring, quality-driven professional should be committed to eliminating MG. We must recognize the uniqueness of each patient experience, and:

• Be a steward of inclusive, empathic care and lead by example
• Be humble and accept the need for lifelong learning
• Strive to engage and establish rapport that fosters partnership with patients and their families
• Talk to, and with patients and their families, rather than at them
• Use shared-decision making for every dialogue with patients and their families
• Inform patients of your process the start of each interaction; this will promote your valuing of their voice
• Hire diverse staff to ensure patient populations are reflected

I know there are other strategies to stop MG and welcome those through your comments. Experience my CMSA Annual Conference presentation on MG through the digital content. Register for CMSA of Houston’s Annual Conference on 9/14 where I’ll be presenting on Medical Gaslighting’s Universal Truth and moderating a panel discussion on this topic of critical workforce importance.