January 16, 2023

Why Doctors Don’t Want Patients Like Me, and How it Impacts all of Us

Stacy Torres author photoBy Stacy Torres

People with disabilities experience substandard medical care, disrespectful doctor-patient interactions, and longstanding barriers to accessibility. A recent study published in Health Affairs helps explain why. 

When granted confidentiality in focus groups, doctors revealed personal aversion to and avoidance of patients with disabilities—patients like me. Their reasons ranged from prejudicial attitudes to the logistical and financial hurdles of treating patients with complex care needs.

While some doctors used ableist language, such as “mentally retarded,” and complained about “entitled” patients who demanded unreasonable accommodations and “disrupted clinic flow,” they also cited genuine structural barriers such as appointment time constraints, excessive paperwork, challenges coordinating care, inaccessible medical offices unable to accommodate wheelchairs, communication problems, and insufficient staff knowledge and training.

I saw myself in these grievances, thinking back to my mid-20s when a bemused nurse told me I had a “thick file.” I didn’t yet know that I had a systemic autoimmune disease, Sjogren’s, that causes many disabling symptoms including dry mouth, dry eyes, joint pain, and debilitating fatigue. I require significant time with healthcare providers, especially when I experience a symptom “flare,” and my body goes haywire. Once in a flare period, a physician’s assistant told me I could only discuss three things during an appointment. I balked and pressed forward with everything I needed to cover. I try to streamline appointments by organizing my discussion points in my notebook but can’t help feeling self-conscious when I have a long list of distressing new symptoms to report. 

Despite the painful truth of the study’s findings, I’m grateful for the doctors’ honesty. Bias and discrimination in healthcare mirrors our larger culture’s disregard for people with disabilities, but also reflects structural barriers to delivering care. The study offers an important glimpse into how the medical system perpetuates harm but also points towards key areas for reform to improve healthcare for us all.

If we’re privileged enough to grow old, most of us will develop a chronic illness or disability. Bias and discrimination against people with disabilities hurts everyone, not just those in a “special” category. Improving complex care benefits everyone, akin to universal design principles, such as curb cuts that smooth passage for wheelchairs and strollers alike.

The cost of inaction on discrimination is high and climbing, as our growing older adult population lives with higher rates of disability. Prior research has shown people avoid medical care due to stigma and condescending treatment from doctors, due to bias based on weight and age, for example, leading to poorer health outcomes and with worsening conditions that “present later” from delayed and low quality care. Despite some recent gains in the delivery of care to patients with disabilities, such as increasing accessibility through telehealth, research has shown how the pandemic has gravely strained medical care for patients with disabilities, widening disparities in delayed and unmet care. 

To combat discrimination, we need a multi-pronged strategy consisting of activism, culture change, reform and regulation, improved training and education, robust research, and data collection.

A big problem is cultural. The setup of our communities, workplaces, schools, and healthcare facilities often deny people with disabilities full personhood. The social model of disability posits that social structure barriers make people with disabilities sicker and more isolated over time, versus the medical model of impairment that locates disability in individual differences. As someone who studies aging and neighborhoods, I often consider how the lack of public transportation, safe sidewalks, nearby medical services, and essential businesses such as pharmacies and grocery stores make life unnecessarily difficult for elders with disabilities who are aging in place.

Our medical system is a product of these societal failures, setting the stage for a lack of inclusivity in healthcare. One long overdue step is requiring disability competency training in curricula for all healthcare professionals. Documentaries such as Crip Camp, which tells the story of teenagers with disabilities in the 1970s who attended a summer camp that nurtured their development and planted seeds for future activism, should be required viewing for first-year medical students. Insights from medical sociology on “patient work,” “illness narratives,” and “patient expertise,” also offer important insights to help medical professionals to move away from a deficit framework and recognize the contributions of patients with disabilities to collaborating with providers on their care.

Diversifying the healthcare workforce and increasing representation of medical professionals with disabilities promises to improve education and patient care. We will only address the dearth of mentors with disabilities in medical education by decreasing barriers to entering healthcare fields and promoting retention through necessary accommodations, mitigating workplace discrimination, and eliminating career advancement penalties for disclosure.

We need culture change in medicine but also guardrails to protect patients and their healthcare access. Eliminating all bias is impossible but we can take steps to reduce harm.

One key area for reform is increasing time with healthcare providers. Fifteen minute appointments do not provide adequate time to address multiple needs, straining interactions and compromising relationship building between providers and patients. This system works for few. Does anyone want to be rushed through a medical appointment?

Understaffing also compromises patients’ complex care needs when healthcare workers are overwhelmed with paperwork and administrative tasks, swelling caseloads, and lack adequate time to assess and treat patients. Last fall’s 10-week strike by Kaiser Permanente mental health workers in Northern California prioritized finding solutions to these problems and resulted in a new contract that provided two additional hours per week for therapists to respond to emails and other tasks related to coordinating patient care, increased initial consultation times for children in distress, with a commitment from Kaiser to hire more therapists.

Raising Medicare and Medicaid reimbursements would also help cover some of out of pocket costs for necessary equipment, such as wheelchair accessible scales and adjustable exam tables, which many medical offices still lack.

Finally, without more data collection on patients with disabilities, we will remain ignorant about disparities in treatment and health outcomes. As Dr. Tara Lagu, one of the study’s authors, said, “We have data on racial disparities because health systems are forced to collect data on race.” Audit studies can also help uncover discriminatory behavior.

Unless we commit to a range of strategies to fight bias and discrimination around disabilities and other identities, we will cheat our present and future selves of realizing our full potential and achieving true health equity. As medical sociologist Irving Zola astutely wrote about accepting “bodily differentness” from aging, chronic illness, and disabilities, “Acceptance is acceptance of an inevitable part of oneself.”

Comments

People often say that a doctor's job is to save people, but I see that in today's society, without money, doctors don't have humanity.

Good doctors are available in the world around. Trust Me

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