Chapter 6 – Disability
6.1 Understanding Disability Bias in Medicine
Camilla Curren MD
Acknowledging Bias Against Persons with Disabilities in the Health Care Setting
Bias against persons with disabilities is longstanding, notes John Moore, CEO/Executive Director of the Ohio Department of Deaf Services. Starting with being called a “retard” in his high school, where he was the only deaf student in his class, Moore has experienced discrimination and bias in health care settings and elsewhere and has developed a prominent career as an advocate for the deaf, helping other hearing-impaired persons reach their greatest potential. Moore, who often finds himself in the thick of debates with insurers over coverage of deaf patients, once considered the field of healthcare law but notes “it was just too dry.”
Moore finds that his experiences are similar to those of others with “invisible” disabilities not immediately apparent to health care providers. Physicians and nurses may mistake agreeable behavior such as smiling and nodding on the part of a patient with disabilities for understanding. “In fact, they just may be too embarrassed to admit that they do not understand what is being conveyed, and medical staff is not aware of this,” he states. This type of misunderstanding, which can lead to medical errors and to disparities in health care delivery to patients who are deaf, can be avoided with the standard use of a medical interpreter, or by the health provider learning basic signing or writing out questions and information on a whiteboard.1,2 “Different persons have different needs like they have different allergies,” Moore contends; paying attention to these differing needs and taking the extra time to allow for personalized adequate communication with patients with disabilities can go a long way towards collecting adequate information and meeting health care goals.1
Identifying Bias in Physician/Patients with Multiple Disabilities
Jody Burris, mother of 37-year old Trisha Burris, affected since childhood by cerebral palsy and severe developmental delay, has had a range of experiences in navigating healthcare for her daughter. She notes that when patients with multiple or more obvious disabilities encounter the medical establishment, their needs for more time and different communication and examination strategies may threaten the provider’s intention to be inclusive in providing unbiased medical care even in the best circumstances.3 Jody feels that whenever possible the patient should be involved in their own healthcare decisions and should be assumed to be able to hear and understand conversations about themselves in the exam room.2 A simple measure like sitting down with and speaking directly to, rather than standing above and talking over, an individual in a wheelchair establishes a level of respect and shared humanity, that reduces bias and defensiveness on both sides.3 While the Burris family has been successful in establishing a comfortable primary care relationship, Trisha and her family continue to search for a dentist who will discuss methods of cleaning and restorative dental work. “I certainly can’t help but wonder if she was a normal 37-year-old with the same situation if the outcome of this particular consultation would have been the same. Her teeth are a health and self-esteem concern as it would be for anyone,” Jody Burris adds.
Negative Effects of Bias and Discrimination
In a study of Medicare recipients, 64% reported more than one disability and 25% reported at least one.4 While 98% of survey respondents felt that their physicians were competent and well-trained, those with disabilities reported more dissatisfaction with their doctors on the following measures:
- 2.4 times the rate of respondents without disabilities for “physician understanding their condition”
- 2.4 times the rate of respondents without disabilities for “physician completely discussing their health problem”
- 2.3 times the rate of respondents without disabilities for “physician answering all questions”
- 1.6 times the rate of respondents without disabilities for “physician always seeming hurried.”
This suggests to the study authors poorer communication strategies and less thorough care are provided to patients with disabilities. Medicare recipients with disabilities were also more dissatisfied with the quality of their care and access to their own doctors and to specialists.5
According to the International Classification of Functioning, Disability and Health approved by the World Health Organization in 2001, individuals are classified by the typical patterns of function they exhibit and not by type of disability.6 Patients with mental illness are considered the most disadvantaged in terms of accessing equitable health care, with patients who are deaf faring nearly as poorly in our health care system and people with visual or physical disabilities less severely affected, though also incurring discrepant health care delivery.7 Contributors to unequal health care access for patients with disabilities have long included transportation barriers, poorer access to medicines and specialists, and financial/insurance coverage barriers. However, provider bias and failure to provide longer appointments and communication strategies amenable to interviewing patients with disabilities are thought likely factors adding to this problem.8
Identifying Bias Against Physician w/ Disabilities
Phil Jonas, MD, is a hospital-based physician with a strenuous professional practice who cares for ill medical and surgical patients in the OSU Wexner Medical Center. For Dr. Jonas, providing excellent and equal care to all patients takes on special meaning. Jonas, a graduate of the OSU Internal Medicine Residency program and Northeast Ohio College of Medicine, has used a wheelchair since the age of three when he had a spinal cord tumor resected, leaving his legs paralyzed. Jonas never considered that he would be unable to pursue his goal of an internal medicine hospital-based practice despite physician mentors who recommended to him a more sedentary or “talking” specialty such as psychiatry. In his time at OSU, he has not met with ongoing bias or detractors in the professional setting, noting only some “over-help” from nurses who may be concerned about his ability to perform lines and bedside procedures expediently.
For Jonas, medical school acceptance was the hurdle he actually dreaded the most—he notes that, while no college professors recommended to him against practicing medicine from a wheelchair, he actively avoided potential medical school reference letter writers who would challenge his physical or academic abilities and attributed his rejection letters to his average college grades rather than to his mobility limitations. In fact, he included in his medical school application essays a description of his disability and has been very cofortable with it over the years. However, although he has been treated as an equal peer by colleagues and staff, difficulties with inaccessible examination rooms in clinics and ICU’s and with finding accessible restroom facilities in the Medical Center complex have made his days more difficult at times.
While caring for patients, Jonas estimates he experiences references to his disability at least weekly but has developed strategies for reducing the impact of bias on his job responsibilities and rapport with families. “If you have an obvious physical disability, it’s already out there, you have no control over that—mostly I just use my personality and overcompensate with mental ability.” Jonas tries to build early rapport with the patient to reduce bias and does not hesitate to answer frequent questions about how he functions in a wheelchair as a physician. “This helps with my job to establish a relationship and trust–it gets all the other stuff out of the way,” he contends. It also helps, he feels, to avert the “looks and body language” that betray the subtle forms of bias he frequently encounters from family members. “We need a doctor in a white coat who is standing here being paternalistic,” may be the unspoken message when subliminal bias is noted, he thinks, but this can often be overcome by openly discussing both visible and less obvious forms of disability so that the patient knows his or her physician shares a sense of vulnerability and is able to empathically problem solve with the patient, as both are imperfect in their physical being at the moment.
This theory is exemplified in data collected by Steele and published in January 2016 regarding the performance of recommended basic cancer screenings in primary care practices.9 Steele found that while persons with disabilities received screenings at rates lower than those without disabilities, the size of the discrepancy in screening percentages varied by disability type. Most persons with disabilities were adequately covered by health insurance, and scheduling and transportation to the screening studies proved the biggest barriers to completion. When controlling for social and demographic variables, the study found that, when compared with women without disability, the odds of receiving a Pap test within the previous 3 years were significantly lower among women with disability (AOR, 0.77; 95% CI, 0.60-0.99) and were lowest among women with a mobility limitation (AOR, 0.58; 95% CI, 0.42-0.80). Women with cognitive disabilities received the fewest mammograms. Compared with persons with no disability (6.4%), the study population for this article reported fair or poor health more often, and this reporting varied as well by disability type. Fair or poor health was perceived most often among persons with a mobility disability (63.3%), with overall poorer than average scores also among patients with a cognitive disability (38.4%), a visual disability (29.4%), or a hearing disability (17.4%).9 Physician recommendation was the most important factor in the completion of a recommended screening cancer study among this group,9 yet physicians recommend routine health maintenance services less often to patients with disabilities than to patients without disabilities.10