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Accessible Medical Education and TIC: Increasing Equitable Care for Disabled Patients

Christina Jean Su and Peppar EP Cyr

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Su C, Cyr P. Accessible Medical Education and TIC: Increasing Equitable Care for Disabled Patients. HPHR. 2021;44.  

Disability and Public Health​

Abstract

An estimated 1 in 4 U.S. adults has a disability, and this number continues to increase. Disabled individuals face significant healthcare inequities, including but not limited to inaccessibility and mistreatment. Our current healthcare system is ill-equipped to provide equitable care to this population. There is a lack of accessibility in healthcare environments, lack of accessible medical training to enable disabled people to become healthcare providers serving their own community, and lack of thorough medical education that encompasses care for disabled patients. Furthermore, the increased risk of trauma, as well as increased risk of medical trauma specifically, endured by disabled people puts them at greater risk of long-lasting adverse effects.   

 

In this commentary, we analyze three key areas: 1) the current state of healthcare for disabled patients, 2) disability in medical education & physician workforce, and 3) the relationship between trauma and disability. We argue that the road to more equitable care for disabled patients involves changes to medical education that address all three of these areas. Medical training should expose trainees to disability early and throughout their training, should be made more accessible to support disabled physicians, and finally, should be trauma-informed in a manner that explicitly includes caring for disabled patients and their other intersecting identities.

Introduction

In the US, an estimated 25% of individuals have a disability,1 and this number continues to grow.2 Disability can be visible, in the case of some physical disabilities, but also encompasses hidden disabilities such as psychiatric disabilities, developmental disabilities, learning disabilities, and chronic pain & illness. Disabled people* must navigate an often inaccessible and ableist society, one that discriminates against and devalues disabled people. In addition to physical barriers, disabled people experience structural and attitudinal barriers related to educational attainment and resource allocation. This compounds upon similar barriers related to other, intersecting and minority identities that disabled people often hold.3,4 This stigma can turn into ableist actions – bias, discrimination, and at times, violence against disabled people.

 

Disabled patients often require healthcare at higher rates than the general population, making the healthcare system a key area to address inaccessibility. The U.S. Department of Health and Human Services found that disabled patients have three times as many doctor visits per year and were more than twice as likely to be hospitalized, spending over five times as many days as inpatients, compared to nondisabled patients.5 Yet, despite representing a large proportion of patients seen, healthcare is often inaccessible to, ill-suited to caring for, and fails to acknowledge general and medical trauma endured by disabled patients. We know that patients who hold identities similar to their physicians have stronger physician-patient relationships,6 yet disabled people are heavily underrepresented in the healthcare workforce.

 

Thus, in this commentary, we provide an overview of three key areas: 1) the current state of healthcare for disabled patients, 2) disability in medical education & the physician workforce, and 3) the relationship between trauma and disability. We conclude with three recommendations for medical education to better prepare medical trainees in providing more equitable, trauma-informed care for disabled patients.

Current State of Healthcare for Disabled Patients

Current clinical environments are not well equipped to support disabled patients. To begin, physical accessibility is often poor, with no wheelchair accessible scales or adjustable-height examination tables present in many clinics.7 Pills typically come in bottles with childproof caps, which can make it difficult to impossible for some disabled people to open. Physical and sensory overstimulation by clinical environments also poses as a barrier for disabled patients, particularly for autistic patients and those with other invisible disabilities.8 There are also gaps in information accessibility. American Sign Language (ASL) and other interpreters, large print, Braille, easy read formats for written materials, alternatives to telephone contact, and captioning on videos are not universal in healthcare settings. This can make even simply finding an acceptable provider or making an appointment very difficult for disabled patients.

 

Critically, there are also knowledge and attitudinal barriers. Scholars have demonstrated that physicians severely underestimate the quality of life of disabled people, which has consequences for their care.9 The “disability paradox” is the concept that many people with substantial disability report good or excellent quality of life, yet outside individuals underestimate their quality of life.10 This assumption leads to lower-quality care because it contributes to exclusion or dissuasion from care options including transplants,11 mechanical ventilation, and most recently, care during the COVID-19 pandemic.12 It is especially problematic in reproductive healthcare. For example, results from one study highlights how physicians incorrectly assume that disabled patients are neither sexually active nor at risk of unintended pregnancy, which leads to failure to perform necessary Pap tests and discuss contraception options.13,14 Disabled patients with invisible disabilities face stigma and often an even greater challenge of disbelief among care providers regarding their condition and required care. Providers may also direct questions to support people instead of directly addressing the patient or do not provide sufficient time for disabled patients to answer questions, especially for patients with intellectual disabilities or autism. Disabled patients are more likely to think their physicians do not listen to them, take them seriously, treat them with respect, or take enough time.15 These all contribute to lower-quality healthcare.

 

Lower levels of knowledge and negative attitudes about care for disabled patients are in part due to insufficiently trained physicians. What is more, physicians are aware that they are not prepared to care for disabled patients. Only 40.7% of physicians surveyed believed they would be able to provide the same quality of care to a disabled patient as compared to a nondisabled patient and only 56.5% of physicians strongly agreed that they would welcome disabled patients to their practice.9 Professional development and training efforts are needed, therefore, to address these assumptions and their consequences on health and healthcare.

Disability in Medical Education & Physician Workforce

Current medical training does not prepare physicians for the needs of disabled patients. Despite the prevalence of disability and this population’s increased healthcare utilization, a survey of internal medicine and family medicine residents found that only a quarter of residents reported ever having received any disability training.16 Moreover, of the half of emergency medicine residency programs that have any time dedicated to disability training, they report spending only 1.5 hours on it.17 This problem has been recognized globally for a long time. The first World Report on Disability conducted by the World Health Organization (WHO) in 2011 articulated the lack of necessary knowledge and skills of health care providers to meet healthcare needs of disabled patients. 11 This includes items such as providing accommodations, addressing common misconceptions and biases towards disabled patients, and teaching how to perform a physical exam for a patient who uses a wheelchair. These skills and knowledge are not evaluated on licensing examinations and attitudinal barriers are not considered in determining ability to provide care.18 This provides little incentive to incorporate disability training and disability etiquette into medical training. Even when disability is addressed in medical training, it is often through the medical model lens, in which disability is considered solely a deficit of the individual without addressing the built environment, ableism, and structural barriers that impact disabled patients’ health and wellbeing.19 The current medical training system is producing trainees who leave with little to no time dedicated to learning how to properly care for disabled patients and the issues they face, despite the large number of disabled patients they will care for.

 

In response to this issue, some medical schools have started incorporating disability content into curricula. Many of these programs involve single sessions with some positive effects. For example, the University of South Carolina found that third-year medical students who attended a 90-minute session felt less “awkward” and “sorry for” disabled people,20 and the University of California San Francisco piloted a 2-hour session for first-year students involving a series of activities and discussions that students considered meaningful and relevant.21 While some content is better than none, it is more effective and far less “othering” to incorporate disability content across the years of medical school. For example, The Ohio State University’s Lead, Serve, Inspire curriculum includes content across all four years, including educational experiences incorporating disability in both clinical and community settings.22 They also partnered with the Alliance for Disability in Health Care Education to publish a set of core competencies for use across health professions.23 This trend is encouraging, but it is still a minority of medical schools with disability curricula and these curricula must expand programming past single lectures to a wider variety of formats, include direct interaction with disabled people, and consult disabled people in their design.

 

In fact, beyond simply being the object of education, disabled people themselves can directly contribute to this learning. A common approach to incorporate disabled people is through panel discussions. Depending on the choice of questions, these can give students insight into the everyday experience living with a disability. However, there are other ways to more fully allow disabled people to teach students how to provide appropriate care. Many medical schools use standardized or simulated patients (SPs) in which a well individual is trained and prepared to portray a patient with an illness. This allows students to build their skills and confidence prior to entering the clinical space. There are some institutions recognizing that disability is not simply a role to be played, but a lived experience to learn from, and so are training disabled people to serve as SPs.24 Many students, who noted having minimal to no prior experience with disabled patients, felt that working with disabled SPs was helpful in learning about the needs of disabled patients and improved targeted interviewing skills. While there were operational challenges, they were not insurmountable, and these individuals’ authenticity and expertise were considered worthwhile.24 Finally, to counter the “disability paradox,” it is important to allow students to have experiences that show how disabled people can have meaningful lives in the community.

 

In addition to having disabled people in patient and teaching roles, it is key to include disabled people in medicine itself. A 2019 study estimated 4.6% of medical students disclose a disability, 25 well below the 12% in overall graduate education.26 Many barriers hinder disabled individuals from pursuing careers in medicine. These include non-inclusive technical standards, lack of access to reasonable accommodations, and misconceptions about disabled physicians.27 In addition, studies estimate that ~40% of disabled medical students may not be disclosing their disabilities, with several structural and cultural barriers identified.28,29 This underrepresentation continues later in careers. Of 6,000 surveyed physicians, only 3.1% self-identified as having a disability.30 Many of these disabled physicians self-identified with multiple underrepresented identities which increases risk of experiencing bias, harassment, and discrimination, further underlining the importance of recognizing intersectionality in the disability community. Including more disabled people in medicine would not only benefit those who are enabled to join the profession but would also be an opportunity for nondisabled peers to learn directly from colleagues to challenge ableist assumptions.31 This would also give disabled patients increased likelihood of being seen by providers with whom they share an identity, something shown to lead to higher trust, satisfaction, and intention to adhere to treatment regimens.6

Disability and Trauma

Trauma results from an event or series of events with long-lasting adverse effects on an individual’s mental, physical, emotional, and/or spiritual wellbeing.32 This term is often used in vernacular to describe more intense adverse events, such as violence and abuse, but also includes categories such as racism, discrimination, and mistreatment. Individuals who experience trauma, particularly adverse childhood experiences (ACEs), are more likely to take part in health-risk behaviors such as smoking, alcoholism, and suicidal attempts.33 Disabled people are at increased risk of experiencing violence,34 including child abuse and neglect, and require extra support to cope with traumatic events.35,36 Stigma, lack of social support, discrimination, and ignorance about disability may all be driving forces behind this.  

 

Trauma can span generations as well. Historical trauma refers to multigenerational trauma, oppression, and/or mistreatment experienced by a specific group of people.37 This can reverberate across generations and result in mistrust of the systems and people who took part in the decisions and acts against the oppressed group. Disabled people have historically been mistreated and marginalized by healthcare systems. For example, the intentional infection of intellectually disabled children with hepatitis at Willowbrook State School of Staten Island in the 1950s,38 or the forced sterilization and systematic killing of disabled people by the Nazis during World War II.39 Intersectionality and the historical mistreatment of other minority groups by the healthcare system that further exacerbate this generational trauma and mistrust. For example, decreased pain management among women, specifically women of color, and undisclosed medical experimentation performed on racial/ethnic minority groups across time have led to generations of mistrust of the healthcare system. These, among others, contribute towards perpetuating mistrust and hesitation towards healthcare within disabled populations, and cannot go unrecognized.

 

Finally, their increased interaction with healthcare puts disabled people at greater risk of medical trauma specifically. Medical trauma encompasses the “set of psychological and physiological responses to pain, injury, serious illness, medical procedures and frightening treatment experiences”.40 This response can be the result of mistreatment by medical providers, the nature of illnesses or injury, and conditions of the hospital environment. Disabled patients may experience healthcare differently compared to nondisabled patients. For instance, in a setting of pain management, a disabled patient may not be able to communicate discomfort to their care team in the same way as a nondisabled patient, and this could lead to decreased pain intervention that goes unrecognized. The clinical environment is already an extremely vulnerable environment for patients because the experiences and information received in these spaces can be personal, stressful, and complex. It is essential our medical systems work to relieve some of that burden for disabled patients and most importantly, work to prevent any additional, unnecessary trauma.  

Recommendations

First, medical education should include disability rights education and structured opportunities for medical trainees to work with disabled populations early in and throughout clinical training. Students should be trained to adapt their approach to caring for patients with different abilities with an emphasis on the provision of effective, high-quality care for a diverse range of patients. An ideological shift away from the medical model of disability towards that of the social model is necessary and should be explicit. The social model emphasizes the ways in which societal barriers rather than individual impairments limit what people can do. This training should address assumptions, biases, and social stigma towards disabled patients and bring attention to the inaccessible nature of current healthcare environments. It should also give students exposure to disabled people thriving in the community, not only those in poor health or in the hospital, in order to start to dismantle false assumptions about the quality of life among disabled people. In the process, it is important to note that the disabled community is not a monolith, and the experiences of people with a variety of disability types and chronic illnesses must be emphasized. In order for this work to be equitable, ethical, and ultimately effective, training and education should be rooted in the needs explicitly stated by disabled individuals. As is often said in disability rights, “Nothing about us, without us”.

 

Second, pathways for disabled people to enter medicine needs to be strengthened. The barriers begin early, as technical standards may disallow disabled students.41 Once a student starts medical school, it is important to include disability in inclusion plans, consider new technologies for accommodations, and actively include disabled students in the accommodations process.27 For further information, including detailed recommendations, see the 2018 AAMC report “Accessibility, Inclusion, and Action in Medical Education”.42 This inclusive work must continue beyond medical school and be codified in standardized disability policies to be implemented across graduate medical education (GME) institutions. A comprehensive review in 2020 identified 47 GME handbooks and reviewed disability policies within each. Only 32 had a disability policy and only 12 of those included language that encouraged disclosure.43 Culture shift is also needed to remove the idea of physicians as super-humans who can work grueling hours without ever getting sick themselves, and to reduce the pressure on residents to come to work sick in order to prevent increasing their colleagues’ workloads. These efforts can increase the number of disabled providers who will have their own lived experiences and understanding of the trauma that disabled patients may experience and thus a higher likelihood of thorough care. However, it is not enough to rely solely on disabled physicians to provide this care, and we must produce trained physicians who do not identify as disabled through the previous recommendation as well.

 

Third, care for disabled patients must be trauma-informed. Trauma-informed care (TIC) is an interdisciplinary framework that approaches patient care interactions with the acknowledgement that trauma is pervasive and occurs in all populations.32 With this in mind, providers must be trained to approach each patient encounter with care, verbal cues, and navigation of physical space in a manner that both acknowledges an individual’s trauma and avoids re-traumatization.44,45 Currently, the cited guiding principles frame the role of TIC as part of the response to public health emergencies or as centered around pediatric care.45-47 Principles and training must account for all patient settings and needs, including and arguably especially, with disabled patients. There are now budding movements to integrate the TIC framework into preclinical training for medical students. For example, Elisseou et al. present a framework for teaching trauma-informed physical examinations through standardized patients.48 Their curriculum includes specific language and behaviors to enhance patients’ sense of safety, control, and trust, which are all components of the guiding principles of TIC (see Table 1). This framework can be employed across institutions and integrated into practice for example, with disabled SPs, open conversations during panels with disabled patients, and more. TIC also serves to combat trauma exacerbated by intersectionality and should acknowledge the experiences of and prevent the reverberation of generational and medical trauma of minority identity groups. As noted by the novelty of introducing TIC itself into medical education, this serves as a perfect opportunity to ensure that TIC for disabled patients is integrated from the beginning of this movement.

Conclusion

With over 61 million adults in the US living with disability,1 healthcare is a key entity that presents barriers to the disabled community. Our healthcare providers need to be representative of and well-equipped to provide high quality, trauma-informed care for this population. Medical schools should be intentional about including TIC framework longitudinally throughout preclinical training that also explicitly brings attention to the social model of disability and care needs of disabled patients. Increasing inclusivity in medical training can also help to train more disabled practitioners and equip the medical care team with individuals who may have a deeper understanding of living with a disability. Finally, all of these changes must be sure to prioritize the opinions and voices of those whose care is directly affected: disabled individuals themselves.

 

* Identity-first language (“disabled person”) is preferred over person-first language (“person with a disability”) by many, but not all, disabled people. When referring to specific individuals, it’s best to ask what they prefer.

Acknowledgements

The authors would like to thank Dr. Darrell Hudson and Dr. Caline Mattar for their mentorship, guidance, and both teaching as well as demonstrating what it means to be an advocate. They would also like to thank Audrey Coolman and Kaytlin Reedy-Rogier for sharing their expertise and for their roles in bringing awareness of trauma-informed care into medical education. Finally, they would like to thank Dr. Eva Aagaard for her support of their work to integrate disability into the curriculum at Washington University in St. Louis School of Medicine.

Tables and Figures

Table 1 – Principles of Trauma-Informed Care

 

TIC Principle

Description

Safety

Health care settings and practices foster patient safety both emotionally and physically

Trustworthiness & Transparency

Outlining expectations, treatment proposals, and how care will be provided to the patient to establish trust

Peer Support

Connecting patients to support and individuals who may have similar lived experiences, bring hope, and establish safety and trust

Collaboration & Mutuality

Integrating patients and their support systems to collaborate with health care teams in the patient’s care

Empowerment, Voice & Choice

Recognizing and using patient strengths to empower them in the development of their treatment plan as well as allowing patients to choose their preferred treatment

Cultural, Historical, & Gender Issues

Practicing in a means that moves past cultural stereotypes and biases, offering gender-responsive services, and recognizing the historical trauma that the patient may have endured

 

The Six guiding principles that help frame TIC, defined by the CDC Office of Public Health Preparedness and Response (OPHPR) and the National Center for Trauma-Informed Care (NCTIC).45,46

References

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About the Authors

Christina Jean Su, BS

Ms. Christina Su received her BSc in Molecular & Cellular Biology from the University of Illinois at Urbana-Champaign and is currently a MD candidate at Washington University in St. Louis School of Medicine. She is a disability advocate and was motivated to pursue a career in medicine to enact change following the experiences of her uncle, who lived with a leg disability and passed away shortly before starting her undergraduate studies. Ms. Su also holds a strong interest in the emerging field of trauma-informed care, particularly in its integration into medical education and practice.

Peppar EP Cyr, MPhil

Ms. Peppar Cyr is a disabled MD/PhD candidate in Neuroscience at Washington University in St. Louis. She received her AB in Psychology from Princeton University and MPhil in Clinical Neurosciences from the University of Cambridge. In addition to her research examining the use of newborn neuroimaging to predict individual motor outcomes through middle childhood in children born prematurely, with and without associated brain injury, Ms. Cyr works both nationally and at her institution to improve disability inclusion in medical education.

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