Communicating with Patients with IDD and Their Family Members

DO DON'T
Talk directly to the patient. Talk around/over them.
Engage the patient’s family member/caregiver that they invite into the appointment—they can be one of the best resources you have! Hesitate to engage the patient’s family member/caregiver in the discussion.
Actively listen. Miss the value in what patients have to say.
Explain why you are recommending a medication, treatment, etc. in a way the patient can understand. Assume that the patient knows what you know or use medical jargon that the patient may not understand.
Ask a lot of exploratory questions. Simply ask, “What brings you here today?”
Value the importance of your patient trusting you—with trust comes greater insight and disclosure. Have an expectation that every patient automatically trusts you.
Seek to understand what a patient’s disability means to them and how it uniquely affects them. Assume that everyone with a particular disability has the same needs.
Explore medical/behavioral phenotypes associated with a patient’s genetic syndrome Make diagnoses without fully understanding a patient’s biopsychosocial vulnerabilities.
Seek to understand how a patient’s mental health has been treated in the past and how this may affect current presentation. Label a patient as “difficult/challenging.”
Remain open to feedback from your patients. Believe that your patients have nothing to teach you.
Take the patient’s entire life into consideration: Where do they live? Where do they work? School? Family? Cultural background? LGBTQ+ status? Skills/interests? Etc. Focus solely on the reason for their visit today- the context of their lives may give helpful hints for treatment interventions.
Treat the symptom and address the larger contributing contexts. Focus solely on reducing/resolving the primary symptom.
Ask with an open mind whether the patient uses any homeopathic or traditional remedies and if so, what? When? How? Overlook the importance of asking questions which can provide insight not only into potential contraindications but may also present alternate options to medications and/or lifestyle modifications.
Explore the opportunities a patient has to be meaningfully engaged in activities each week. Overlook the role that boredom/inactivity may be having on a patient’s presenting symptoms.
Seek to understand how a patient takes medication—do they have someone help them? Do they often skip/forget doses? Do they take it in the morning, afternoon, or night? Make a plan to promote adherence and consistency. Assume that because you prescribe a medication it will be taken as directed.
Prioritize a patient’s medication history—do any other providers prescribe medication? Assume you are the sole prescriber.
Recognize if you may not be the best fit for a patient’s treatment needs and offer a referral. Continue to provide care when there may be another provider better suited to the patient’s needs.
Practice patience and kindness at all times, especially when a patient is in crisis—this goes for the patient and their family members/caregivers. They may be in crisis too! It can be hard to remember even the simplest of details when you are stressed. Become upset/irritated with a patient and/or family members if they seem unable to provide the relevant history needed to provide treatment.
Invite people with lived experience to come to a grand rounds/professional development session. Engage with your local disability advocacy group and continuously strive to build competency and promote inclusion. Overlook the importance of asking questions which can provide insight not only into potential contraindications but may also present alternate options to medications and/or
lifestyle modifications.
Explore how a patient typically responds to pain/needles/shots. Wait until a procedure is scheduled to ask questions around pain/needles and shots.
Ask: “What are some of the challenges with my recommendations?” Assume patients will bring up things independently.