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Why judgment-free Duchenne noncompliance conversations matter

More videos

Hawken Miller

Depression and compliance

Embracing care partnership

Overcoming discomfort

Protecting independence

Partnering with carers

Boundaries for carers

Embracing imperfection

Respectful collaboration

Care compromises

Weighing risks

Building routines

Setting expectations

Caregiver boundaries

See more videos

Edward Smith, MD, a neurologist, explains why he avoids judgmental approaches to noncompliance and instead focuses on trust, understanding barriers to care, and collaborative decision-making with patients and families.

Transcript

So when a patient or family admit noncompliance to me, the first thing I do is I call the police — have them arrested and thrown into jail.

Read More

I don’t like the terms “noncompliance” and “admitting” and what — you know. When that happens, the first thing I do is I say, “Thank you. Thank you for feeling comfortable enough to tell me or to share that with me and not hide it. That means a lot. It says a lot about our relationship.”

And then reassure that this is not punitive. It’s not judgmental. It’s all very understandable.

And then explore what might have led to noncompliance. Was it a side effect or side effects? Is it a burdensome therapy that you have to take multiple times? Is it a perceived or real lack of efficacy with, with that particular treatment? Is it something they heard, you know, on the internet? What’s driving — and it may often be multiple things.

And then identifying that and then trying to work on those, those contributors.

And then depending on what the driver or drivers are for the noncompliance, you know, some of them may not be solvable. And a decision may be made collaboratively that, you know, at this point in time, this may not be the treatment for you. And that’s not a failure. That’s just that’s the way it is.

More videos

Support from Duchenne caregivers must include boundaries
Setting expectations for treatment adherence in Duchenne care
Building routines that support Duchenne care
Weighing risks and uncertainty in Duchenne treatments
See more videos

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