The Necessity of Narrative Medicine in Treating Disabled Patients

Approximately one in four (27%) U.S. adults reports having some type of disability. Disability may be inborn or acquired. It may be temporary or permanent. In any case, people with disabilities are less likely to report satisfaction with their healthcare compared to those without disabilities, and are more likely to experience disparities in both access to care and quality of care received. This has been associated with greater burden of chronic disease and overall worse health outcomes for these individuals.

Physician bias within this realm has been well documented. In a 2021 study of U.S. physicians practicing nationwide, 82.4% reported that people with significant disability have worse quality of life than non-disabled people, only 40.7% of physicians were “very confident” about their ability to provide quality care to patients with disability, and only 56.5% strongly agreed they welcome disabled patients into their practices. Studies of patient perspectives tell a similar story. In a recent study of U.S. adults, “disabled people reported lower overall satisfaction with healthcare services, less timely access to care, and worse interactions with providers than people without disabilities.”

Ableism in Medical Education and Healthcare

The inequity in care for disabled patients stems, in part, from ableism. Disability scholar Joel Michael Reynolds defines ableism in the following way:

Ableism refers to the assumption that the “normal” able body is better than abnormal bodily forms and to the social ramifications of that assumption. Ableism leads to a world where we actively shape bodies to be normal and shape our environments for those bodies alone.

Ableism is entrenched in medical education and healthcare as a whole, and literature on this topic continues to grow, including  from multidisciplinary organizations such as The Hastings Center. A significant need for improvement in medical education surrounding disability healthcare and a push for incorporation into Liaison Committee on Medical Education (LCME) Standards for medical school curricula continue. These standards make no mention of disability nor disability health; therefore, no requirement currently exists for medical schools in the United States to incorporate this topic into the required education of future physicians. Ironically, such inclusivity would seem ethically obligatory under the AMA Code of Medical Ethics and embedded within the social contract of physician-hood.

Communication Barriers to Effective Care

Barriers to healthcare for disabled patients include but are not limited to: low health literacy; internalized bias; physician bias/ableism; lack of available resources; financial constraints; lack of physician training/preparedness; patient past trauma within the healthcare system; and lack of physically accessible spaces within healthcare.

Central to all of these barriers is communication. As Guthrie and Charon note in their 2023 article, “Barriers to effective communication perpetuate the inaccurate assumptions that result in incomplete medical information and inferior care.” Improving communication between physician and patient through the use of narrative medicine is one way to increase health literacy and reduce both internalized bias as well as physician bias and ableism. “Narrative medicine is a discipline of the medical humanities that arose to enable clinicians to hear what their patients try to tell them.” Use of this tool as a framework to approach clinical encounters with patients with disabilities may be one way to begin to reduce the steep barriers they face in accessing and engaging in care.

A Narrative Framework for Patient Interactions

The practice of narrative medicine and narrative competence may be beneficial with all patients but may be particularly helpful in working with disabled patients. The following framework, “NARRATIVE,” is one way to begin to develop the skills needed for a patient-centered approach to care.

N – Name

Allow the patient to name what they see or feel as disabling and whether they prefer person-first or identity-first language.

A – Accept

Accept that patients often understand and experience their own bodies in ways that diagnostic testing and exams may not reveal.

R – Respect

Respect the voice and autonomous choice of all patients. One survey indicated that in treating patients with intellectual or developmental disabilities, “Three quarters of physicians reported communicating primarily with persons other than the patient usually or always—an approach that, in some instances, may not align with best medical practice.”

R – Recognize

Recognize one’s own bias(es) and that the patient’s experience matters.

A – Ask

Ask about what you do not know. Providers must exhibit humility.

T – Trauma

Trauma-informed care matters and is essential to build trust. Many disabled patients are not new to the healthcare system and may have already had negative experiences. Medical trauma “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.”

I – Inform

Both patient and provider must do this for one another to ensure that care is patient-centered.

V – Voice

A patient’s voice matters. This is the very essence of “narrative.” Not all individuals experience disability, illness, and wellness in the same way, and their experiences may evolve over time.

E – Empathize, Engage, and Experience

For providers to be empathic they must engage. Partnership, rather than paternalism, leads to improved experience for both physicians and patients.

Reducing structural barriers to healthcare for disabled patients, such as financing, physical accessibility, and geographical accessibility, is a slow and challenging process.  However, improving communication, patient-centeredness and reducing attitudinal bias is feasible by adopting the NARRATIVE framework in patient interactions.

AUTHORS

 Emily Carnes, MD, is a second-year Internal Medicine & Pediatrics resident at the University of Cincinnati Medical Center and Cincinnati Children’s Hospital Medical Center. She has a strong interest in medical education and the care of patients with intellectual and/or developmental disabilities and complex medical needs across the lifespan. She has developed a curriculum centered on the care of patients with disabilities at Stritch School of Medicine at Loyola University Chicago and has contributed to the design and implementation of educational sessions for residents at the University of Cincinnati focused on transitions of care and care for adults with childhood-onset complexity.

 Nanette Elster, JD, MPH is the John B. Francis Co-Chair in Bioethics at the Center for Practical Bioethics. She is also a Professor at the Neiswanger Institute for Bioethics and Healthcare Leadership, Loyola University Chicago Stritch School of Medicine, where she teaches courses in pediatric and adolescent ethics, oral health ethics, genetics and ethics, professionalism, and disability ethics. She also supervises the graduate program’s master’s and doctoral capstone courses.