People With I/DD at Risk: A Joint Commission Sentinel Event Alert on Diagnostic Overshadowing

Juanita is a 53-year-old woman. She has a long history of anxiety and depression. Juanita also has cerebral palsy and an intellectual disability and lives in a community residence for people with intellectual/developmental disabilities (I/DD).

For the past couple of days, Juanita has been experiencing increased anxiety. She tells her supporters she feels more tired than usual, has a poor appetite, and has been having “dizzy spells.” Her supporters reached out to Juanita’s primary care provider, who recommended they give her lorazepam, as outlined in her as-needed medication protocol. But it doesn’t help, and Juanita now says she feels like she is going to die.

While it is not uncommon for Juanita to suffer from acute anxiety, her supporters contacted the primary care provider again, saying, “something just isn’t right with Juanita.” A telehealth appointment was arranged, during which the provider met with Juanita and her supporters. The provider ultimately recommended Juanita be seen in the emergency room to evaluate her symptoms. A diagnostic workup was done, and it was determined that Juanita was having a heart attack and needed immediate intervention.

Fortunately for Juanita, she can communicate her symptoms, she has supporters who know her well and have been educated in healthcare advocacy for people with I/DD, and she has a relationship with a primary care provider who understands the value of “looking beyond the behaviors” to explore the potential for an undiagnosed medical condition. But this outcome is a best-case scenario and not the typical outcome for people with I/DD because of a phenomenon known as “diagnostic overshadowing,” the topic of a recent Sentinel Event Alert issued by The Joint Commission, a global driver of quality improvement and patient safety in healthcare and a leading accreditation body for healthcare entities.

Diagnostic overshadowing stems from cognitive bias and poses a serious health risk for people with disabilities. Often, particularly in the case of people with I/DD who have co-morbid behavioral health conditions, symptoms that would otherwise be addressed through immediate medical evaluation are discounted and attributed to their I/DD. No further assessment is conducted, differential diagnoses are not considered, and medical conditions continue untreated—often while psychotropic medications are being given to “treat” the person’s symptoms.

“Diagnostic overshadowing is a serious safety and quality concern as an initial misdiagnosis can have a significant impact on quality of life, including the physical and psychological wellness of patients,” says Ana Pujols McKee, MD, executive vice president, chief medical officer, and chief diversity, equity and inclusion officer, The Joint Commission.

According to the alert, the medical literature provides extensive evidence that diagnostic overshadowing exists within clinicians’ interactions with patients of all ages with physical disabilities or diagnoses such as autism, mobility disabilities, and neurological deficits. Unfortunately, most clinicians are unaware of this because medical and nursing schools do not typically include curricula on healthcare for people with I/DD, and most practicing clinicians have not had the benefit of education in disability-competent healthcare.

The Joint Commission Alert recommends the following to address the serious, life-limiting, and sometimes life-threatening consequences of diagnostic overshadowing:

1. Create an awareness of diagnostic overshadowing during clinical peer and quality assurance reviews and by addressing it in training and education programs.
2. Use listening and interviewing techniques designed to gain better patient engagement and shared decision-making.
3. Collect and aggregate data about pre-existing conditions and disabilities and create electronic health record prompts for clinicians.
4. Use an intersectional framework when assessing patients in groups prone to diagnostic overshadowing to overcome cognitive biases and look beyond previous diagnoses.
5. Review your organization’s ADA compliance using the added perspective of diagnostic overshadowing to ensure that it meets the needs of patients with physical disabilities.

According to Dr. Craig Escude, IntellectAbility President and developer of the Curriculum in I/DD Health Care, “As The Joint Commission recognizes, when providers set aside bias and assumption, they can listen to people with I/DD more effectively and therefore treat them more effectively.”

Lorene Reagan RN, MS, Director of Public Relations at IntellectAbility, is a career-long I/DD nurse and former state I/DD Bureau Chief, Senior Medicaid Policy Administrator, and national consultant to state Medicaid programs. She is always interested in talking with others about health equity for people with I/DD and can be reached at [email protected].