Doctors frequently misdiagnose individuals with intellectual and developmental disabilities (commonly referred to as “DD/ID”). When these people exhibit “challenging behaviors,” such as vocal distress and agitation, doctors may assume these behaviors are symptoms of the disability, when the person is actually acting differently due to an infection or other unrelated disease.
Researchers in Canada studied prescribing practices for 51,881 adults under 65 years old with DD/ID, divided further into cohorts with and without comorbid psychiatric diagnoses. They found that doctors prescribed antipsychotic medications to nearly one-third of DD/ID adults without a psychiatric diagnosis. One-third of these patients were getting medication to treat a disease they did not have.
Communication barriers between providers and patients, and providers’ unconscious biases, lead to incorrect and unsupported medical assumptions — a phenomenon called diagnostic overshadowing. Diagnostic overshadowing occurs when health care providers treating individuals with disabilities misattribute signs and symptoms of a new condition to the underlying disability, instead of diagnosing the condition that fits the patient’s clinical presentation. Such implicit bias can result in failure to treat the new condition and even in unnecessary and preventable deaths.
How can health care providers, courts and legal professionals address and prevent the harm of diagnostic overshadowing?
Diagnostic overshadowing and extraordinary treatment orders in Massachusetts Probate and Family Courts
In Massachusetts, when a person is prescribed “extraordinary medical treatment” and the person lacks the capacity to consent to such treatment, a judge of the Probate and Family Court engages in a process called substituted judgment. This process is supposed to occur only if the judge determines the person is incapacitated. If so, the judge decides what decision that person would make if they had the capacity to make decisions.
A common extraordinary treatment is antipsychotic medications. These medications can be intrusive with more adverse and long-term effects than other treatments. In these cases, the Probate and Family Court authorizes a so-called “Rogers guardian” to make extraordinary treatment decisions for the respondent. The Rogers guardian can be a family member, friend or court-appointed licensed professional, and is often vested with the dual role of Rogers monitor. A Rogers monitor is responsible for overseeing the respondent’s treatment and reporting risks and benefits of such treatment to the court annually.
A prerequisite to substituted judgment is the court’s review of a medical-legal form, either a clinical team report or a medical certificate. Both forms must be signed under the penalty of perjury. Clinical evaluators completing and signing forms for extraordinary treatment should be diagnostically thorough and accurate — yet diagnostic overshadowing still gets in the way.
The clinical team report, almost always used for persons with DD/ID, contains a section called “Other Relevant Diagnoses,” which instructs the clinician to “list other relevant physical or mental diagnoses that affect decision making ability.”1 This instruction may sound straightforward on paper. But too often, clinicians gloss through this question with a “not applicable” (N/A).
How does diagnostic overshadowing in extraordinary treatment cases occur in practice? One common scenario is when a respondent with autism and who is non-verbal exhibits a sudden increase in agitation. A doctor would interview most patients, order tests, and might discover underlying causes like overactive thyroid, medication toxicity or infection. But for an autistic patient, the doctor may assume the agitation is a symptom of autism. The treatment recommendation for agitation or irritability associated with autism is usually antipsychotic medication. These medications, if administered for a misconstrued indication, will subject the respondent to continued suffering from both the unresolved medical issue and potentially harmful effects of the medication itself.
Why do clinicians miss diagnoses when evaluating individuals with developmental and intellectual disabilities?
Clinicians completing extraordinary treatment forms could feel pressured by the petitioner (e.g., school, family member or hospital) to complete the forms in a manner that gets treatment administered as soon as possible. Usually, the petitioner has noticed the patient is agitated or “acting out.” The goal is to get them calmed down, and this usually means some kind of psychotropic medication. The clinician is not asked to explain or treat the cause of the behavior, and it is easier to write a prescription for a known condition than to investigate why the patient’s behavior has suddenly changed. Another factor is the limited and brief answer spaces in such documents, which encourage little to no explanation by the clinician and implicitly discourage a well-developed medical narrative that one would use for an initial patient visit note.
Additionally, the providers completing such forms are not always the patient’s usual doctors. Often, they are psychologists or social workers appointed by the court, who may not be trained to recognize clinical presentations among individuals with verbal communication difficulties, a common issue among people with DD/ID. These providers may be overwhelmed with a heavy caseload, feel bad for the family, or even feel pressured by their employer (school, hospital, nursing home) to get the form completed and signed immediately. The provider may also be unaware of the implications or impact of submitting this form, especially when the provider is new to the case or rarely sees the patient outside of the minimum yearly examination required as part of the report.
Regardless, the trend of cursory answers and inaccurate or missing diagnoses indicates a need for a mandatory roadmap process, one that both supports clinicians in conducting these critical evaluations and supports the rights of individuals with disabilities to be worked up for underlying medical conditions.
Diagnostic overshadowing is a form of health care discrimination
The stark reality of the practice of overlooking diagnoses due to one’s premature assumptions is actually silent discrimination manifested by disparate health care treatment for individuals with developmental and intellectual disabilities. Outside of the Massachusetts Probate and Family Court, providers should be aware of the potential consequences for their actions under federal laws, including the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act.
Section 504 is implicated in federally funded programs; Title II of the ADA applies to health care services by local and state governments; and Title III of the ADA relates to public accommodations, which cover many private health care services. When a person with DD/ID presents to a health care provider, the provider should treat the person as a patient with reasonable accommodations in place as necessary, to fit the person’s clinical presentation and medical history to the appropriate diagnosis and treatment plan.
Potential Solution in the Future — Treatment Review Panels
Silent discrimination in the provision of health care to individuals with developmental and intellectual disabilities leads to decisions to withhold appropriate treatment. These decisions equate to people’s lives being valued less than the lives of those without DD/ID.
One significant problem is the Probate and Family Court’s lack of data transparency on how many petitions for extraordinary treatment are filed each year and how many treatment plans get extended. This data gap leaves attorneys, clinicians, and even court personnel and judges unaware of the seriousness of the problem of inappropriate and harmful prescribing of antipsychotic medications to individuals with DD/ID in Massachusetts.
Attorneys and judges can learn from previous instances of health care discrimination and build safety nets in the form of treatment review panels composed of groups of clinicians that peer review each other’s evaluations. According to a 2015 research letter by the U.S. Food and Drug Administration and university researchers, 15 states have implemented Medicaid-recipient clinical peer review committees. In these states, review teams adjudicate the appropriateness of decisions to prescribe antipsychotic medications to Medicaid-insured children and adolescents. A similar process could be enacted in Massachusetts for recipients of court-ordered antipsychotic medication once more data is collected on the prevalence of extraordinary treatment petitions in the Probate and Family Court.
While specialized public services require more work and funding at the outset, the long-term benefits of ensuring comprehensive evaluations of individuals with developmental and intellectual disabilities will guard against the costly and damaging medical and legal repercussions of diagnostic overshadowing.Paola Rossetti is a licensed attorney, a member of the Massachusetts Developmental Disabilities Council and a law clerk for the Commonwealth of Massachusetts. Her work consists of assisting administrative law magistrates in cases appealed from other state agencies, including decisions on physician disciplinary action and state employee retirement benefits.
1 Commonwealth of Massachusetts: The Trial Court: Probate and Family Court, Clinical Team Report MPC 402
(5/30/11) at 2, available in pdf at www.mass.gov/doc/clinical-team-report-mpc-402/download.