Addressing Hydroxyurea Nonadherence and Medical Mistrust
6m 28s encounter
This is an unedited encounter from ClinicalSim. Review the same recording, transcript, and feedback report the learner received.
The scenario
Your role
You are the Pediatric Hematology-Oncology fellow caring for Jordan, a 13-year-old with sickle cell disease.
Jordan Williams, a 13-year-old with HbSS sickle cell disease, has recurrent vaso-occlusive crises, has missed multiple hematology appointments, and takes hydroxyurea inconsistently. You are meeting his mother, Monique, one-on-one in an outpatient hematology clinic exam room. Jordan is not present. Monique is his primary caregiver and decision-maker, and she carries deep mistrust of the healthcare system after encounters where Jordan's pain was treated as drug-seeking and she was treated as difficult. She has also seen hydroxyurea make Jordan feel sick. Your job is to understand the barriers to treatment, address her mistrust, engage Jordan's developing autonomy, and build a plan together.
You will speak with Monique Williams, Jordan's mother — guarded and braced for judgment at first, forthright, and ready to defend her son and herself, but responsive to genuine respect and curiosity.
Objectives
- Use motivational interviewing to explore readiness and barriers rather than directing or coercing.
- Acknowledge medical mistrust and the reality of bias nonjudgmentally and without defensiveness.
- Advocate for the adolescent's developmentally appropriate inclusion and developing autonomy in shared decision-making.
- Explore social determinants and practical barriers such as transportation, cost, and scheduling.
- Maintain the therapeutic alliance during a potentially adversarial conversation and co-create a realistic plan.
Listen to the recording
Hear the full 6m 28s encounter
▶Transcript27
Before we start, let me just say it. Nobody in these places really listens to Black patients, and that medicine you keep pushing makes my son feel sick. So tell me why I should keep giving it to him.
Oh, man. Um, Monique, thank you so much for sharing your frustration with me. Um, and tell me, like, I'm Dr. Grisman. We haven't met before, um, but I would really love to hear about what Jordan's experience has been like when, uh, when he takes his hydroxyurea.
Okay... well, when he takes it, he gets nauseous. Tired too, like he just wants to lay down and not move. So some days, honestly, I let him skip it, because he has school and he is already dealing with enough.
Yeah. I don't blame you. I, I can imagine that Jordan feels awful if he's nauseous and too tired to go to school.
Yeah. And then on top of that, he is thirteen now, starting to have his own mind about things. Some mornings he just tells me flat out, mama, I am not taking that today. And I do not always have the fight in me to argue with him before I head to work.
It's a lot. It's a-- It feels like a big stressor in your life right now.
It is. Between two jobs and his little brother and sister, and then the crises when they hit... I am running on empty most days. And I am tired of feeling like nobody in the medical world actually sees that.
Well, I see you, and I hear you, and I really appreciate you sharing this with me.
Thank you... that actually means something to hear. Can I ask you straight then... is this medicine really worth it? Because I have heard it helps, but I have also heard things about taking it for years and years, and I do not know who to believe.
Yeah. Tell me. Tell me everything that you've heard, and I, I wanna sort of gauge that and then share my understanding about hydroxyurea too.
Okay... well, I have heard it is supposed to cut down on the pain crises, maybe even help him live longer. But I have also heard things like it messes with your blood counts, and people whispering about whether it could cause cancer down the line or mess with him having kids one day. And meanwhile I am watching it make him sick right now. So I do not know what to hold onto.
Yeah. And so it feels like a lot of conflicting things that people are saying, and I can imagine it feels really confusing.
It really does. So I need you to tell me straight, doctor... what does it actually do for him, and what are the real risks I should be worried about?
Yeah. I mean, so what it actually does is it really tries to decrease the amount of admissions needed for pain crises, you know? And I'm hearing you in that these admissions in general feel like a stressor. Um, lip smack what questions do you have for me so far?
Okay... so fewer crises, fewer hospital stays. That part I want for him, badly. But what about the long-term stuff... the cancer worry, the fertility worry. Are those real, or is that just people talking?
So I have to be honest with you in that I personally have not seen hydroxyurea itself cause cancer. Um, I might say, like, you know, if you look at the evidence and there are kids who have sickle cell, um, they ultimately might have hydrox- take hy- hydroxyurea and then develop cancer down the line, but that might not actually be due to the hydroxyurea itself. Same thing goes with fertility.
Okay... that actually helps to hear it put plain like that. So it is not the medicine itself causing those things, as far as you have seen. What about the nausea and the tiredness though... is there anything we can actually do about that, or is that just what it is?
Great question. So tell me a little bit about how he's taking the medication, like what time of day, what he's taking with it, all that sort of stuff.
He takes it in the morning, usually before school, sometimes on an empty stomach if we are running late, which... honestly is most mornings. I just hand him the pill and a little water and we are out the door.
Yeah. Well, it sounds like, you know, the way that we're doing it is might, might not be working with his system. And so, um, you know, tell me about what it would feel like if you gave it to him at nighttime instead of the morning time, and so then maybe he could sleep through, um, that fatigue and wake up feeling more rested and ready to rock and roll.
Hm... nighttime. I had not thought about that. That actually might work better, because then if he feels queasy he is just laying down anyway. And he would not be dragging through school the next day. Okay... I am willing to try that.
Okay. So let's say, let's try this, right? And then let's follow up maybe in a week and see, um, how it goes. And let's make sure that Jordan's on the same page too, and make sure that he feels like this is a good plan for him and his own schedule.
I like that you said that... about Jordan being on the same page. Nobody really asks him what he thinks, and he is starting to notice. One thing though... a week is tough with my work schedule. Is there any way we could do that follow-up by phone, or after hours somehow?
Yes, let's follow up by phone. Let's make this as easy as possible for you. I know you're juggling with so much.
Thank you... really. That takes a weight off. A phone call I can do on a break, that works for me and for Jordan too.
Great. Maybe next time the three of us can have a conversation so that we can include him in this and make sure that he feels like he's part of the plan.
I would really like that. He needs to hear it from you too, not just from his mama nagging him. Okay... I can work with this plan. Thank you for actually listening to me today.
Feedback
How to read this feedback
Every score is written as value / max, so you can see both the points earned and the points available. A spoken simulation can’t surface everything a real visit would, so when something couldn’t be judged fairly, the feedback labels it instead of holding it against you. Here’s what each label means.
(simulation limitation)The voice/text modality physically can't reveal it
e.g. eye contact, body language, facial affect, physical exam, EHR documentation
(no opportunity)The scenario never created the occasion
e.g. conversation ended before this step; situation never arose
(not applicable)Out of scope for this case
e.g. a domain that doesn't apply here
A not assessable item does not affect the score. The format did not give you a fair chance to show that behavior, so the item is excluded. That is different from “Not demonstrated,” where the moment was there and the skill didn’t come through. Only the second one reflects on how the encounter went.
For ACGME milestones, some scenarios can only assess a competency up to a certain level because the higher levels turn on behaviors a single spoken encounter can’t surface. When a scenario’s ceiling is below Level 4, that milestone is still shown for its formative value but is “Not in overall grade” . It doesn’t count toward the overall grade, so a case that can’t fully exercise a competency never reads as a shortfall.
Overall impression
- Strengths — The learner built a genuinely collaborative, warm encounter: they opened non-defensively to a charged statement about racism and being unheard, reflected the mother's exhaustion and confusion accurately, negotiated a follow-up plan around her real constraints, and repeatedly worked to bring the adolescent in as a partner. Empathy and partnership were the clear high points, and sustain talk was handled without ever deepening the case against treatment.
- Priority gaps — The strongest change talk ("I want that for him, badly") went un-elaborated; the dosing solution and information were clinician-generated rather than drawn from the client; risk information was given without seeking permission and was somewhat imprecise; and explicit affirmation and any collecting summary were missing.
- Top action items
- When the client voices desire or reason to change, stop and amplify it with a reflection before moving on.
- Ask permission before giving information, and tighten the accuracy of what you share.
- Elicit the client's own ideas for solving problems before offering your own suggestion.
- Add at least one explicit affirmation of her strengths and a brief summary that links her statements toward the plan.
References
- Brandow AM, Jirovec DL, Panepinto JA. Hydroxyurea in children with sickle cell disease: practice patterns and barriers to utilization. Am J Hematol. 2010;85(8):611-613.
- Haywood C Jr, Lanzkron S, Hughes M, Brown R, Saha S, Beach MC. The Association of Clinician Characteristics with their Attitudes Toward Patients with Sickle Cell Disease: Secondary Analyses of a Randomized Controlled Trial. J Natl Med Assoc. 2015;107(2):89-96. doi:10.1016/S0027-9684(15)30029-8
- Crosby LE, Ware RE, Goldstein A, et al. Development and evaluation of iManage: A self-management app co-designed by adolescents with sickle cell disease. Pediatr Blood Cancer. 2017;64(1):139-145.
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