BOSTON — Primary care clinicians caring for patients with intellectual and developmental disabilities often recommend guardianship, a responsibility with life-altering implications.
But only approximately 30% of primary care residency programs in the United States provide training on how to assess the ability of patients with disabilities to make decisions for themselves, and much of this training is optional, according to a recent study cited during a workshop at the 2024 annual meeting of the Society of General Internal Medicine.
Assessing the capacity of patients with disabilities involves navigating a maze of legal, ethical, and clinical considerations, according to Mary Thomas, MD, MPH, a clinical fellow in geriatrics at Yale University School of Medicine in New Haven, Connecticut, who co-moderated the workshop.
Guardianship, while sometimes necessary, can be overly restrictive and diminish patient autonomy, she said. The legal process — ultimately decided through the courts — gives a guardian permission to manage medical care and make decisions for someone who cannot make or communicate those decisions themselves.
Clinicians can assess patients through an evaluation of functional capacity, which allows them to observe a patient’s demeanor and administer a cognition test. Alternatives such as supported decision making may be less restrictive and can better serve patients, she said. Supported decision-making allows for a person with disabilities to receive assistance from a supporter who can help a patient process medical conditions and treatment needs. The supporter helps empower capable patients to decide on their own.
Some states have introduced legislation that would legally recognize supported decision-making as a less restrictive alternative to guardianship or conservatorship, in which a court-appointed individual manages all aspects of a person’s life.
Sara Mixter, MD, MPH, an assistant professor of medicine and pediatrics at the Johns Hopkins University School of Medicine in Baltimore and a co-moderator of the workshop, called the use of inclusive language in patient communication the “first step toward fostering an environment where patients feel respected and understood.”
Inclusive conversations can include person-first language and using words such as “caregiver” rather than “caretaker.”
Thomas and Mixter also called for the directors of residency programs to provide more training on disabilities. They cited a 2023 survey of directors, many of whom said that educational boards do not require training in disability-specific care and that experts in the care of people with disabilities are few and far between.
“Education and awareness are key to overcoming the challenges we face,” Thomas said. “Improving our training programs means we can ensure that all patients receive the care and respect they deserve.”
Thomas and Mixter report no relevant disclosures.
Lara Salahi is a health journalist based in Boston, Massachusetts.
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