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We got here through our
developmental pediatrician,
whom Rose had not seen, what, since you were about--
-I'd say about 12 or 13. -Yeah, and I was getting
to the point where I was a little bit in a panic,
because I got a call from the pediatrician's office
saying that she really had aged out of the office
and that the doctor's insurance was in jeopardy,
and I asked for a referral.
I really wanted someone that would "get it."
I needed to know that we were gonna have someone
that if something major did come up,
that they understood the unique elements
in dealing with a young adult with disabilities.
This video will focus on teaching practical examples
and best practices of interaction and communication
between healthcare professionals
and adult patients with intellectual disabilities,
commonly referred to as ID.
If you're used to treating patients
that are very straightforward,
and you have something that's just a hair more difficult,
you know, there may be some reluctance
in trying to treat this population.
And it takes more time, patience,
and it's kind of hard out there,
especially if you're not comfortable
with this population.
Dr. Eric Sung and Dr. Alice Kuo
have first-hand experience
serving patients from this population.
I see the side of parents who are incredibly
anxious and worried about their young adult
and making decisions for themselves.
But at the same time,
in order for young adults to have independence,
they have to have some decision-making capacity.
And so, I think from a healthcare perspective,
it's important for a physician to understand
the nuances of that.
In this video, we will cover topics that will provide
a more inclusive experience
for your patients with an intellectual disability.
For many people, the doctor's office is already
a place of anxiety, concern, or stress,
due to a health or medical reason.
But for those with ID,
the environment can be even more stressful.
I have had parents of my patients say
that they've unfortunately had a number of negative experiences
with those practices,
and not necessarily the physician,
but I think it's more the staff
and sometimes the physician as well
who just don't seem to feel comfortable
or claim that they haven't had the training
or just aren't, you know,
just haven't had the experience
of working with patients
with any kind of developmental disability.
The number of providers treating this patient population
is just very, very minimal.
-Jonathon? -It may take them
months to years just to find these locations
and then get on the wait list.
-Hi, how are you? -Hi, I'm Bradley.
Hi, Bradley, hi, Jonathon, come on in, how are you?
It's something we try to address,
and those who service this population
really try hard to help out,
but we just don't have enough providers out there.
You can help ensure access to quality healthcare
by applying a few basic concepts
to your team's routine.
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A staff member may need to inform other staff members
as well as the physician
of a patient's communication needs,
limitations,
or behavioral triggers prior to the exam.
This can be noted in the medical chart
but also shared verbally and discreetly
with other staff members as well.
I always make sure that I read everything
that's on the appointment notes to make sure
why they're here,
who they're here with,
and make sure that if they have any special needs,
I'll make sure that I let the nurses know.
Any new situation can be anxiety-provoking to patients,
and so, if there is an expectation
or there's a history or we know,
then a lot of times,
the staff will work to get that patient
into a room very quickly.
They will give me a heads-up,
or during our morning huddle,
we'll know that I need to sort of be on time
for that patient so that they're not waiting too long.
There's just different needs for every patient,
not just one specific need.
Make them feel comfortable.
Make the parent and guardian feel as comfortable as they can,
because this is a different setting.
It's gonna be different, you know, for everyone.
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We can anticipate the visit,
we can take pictures if we need to
and let the families show the patient who's coming,
you know, sort of all the different stations
and everything to expect.
I feel like that level of accommodation
is for any patient.
-Hi, Jacob! -Hi.
How are you? Nice to see you.
I'm Lorena, come on back.
Staff and nurses play a vital role
in setting the tone for the interaction.
Demonstrate assumption of competence
by addressing questions and comments to the patient
rather than to the caregiver or parent.
Is it okay if I do your blood pressure?
-Yes. -Okay.
So it's gonna give your arm a hug, okay?
It doesn't hurt.
Okay. Like the ones at CVS.
Like the ones at CVS.
Relating the situation to a past experience
can help relieve anxiety for patients with ID.
During your patient discussions,
use concrete terms more than abstract concepts.
Use simple vocabulary and simple sentence structure.
Avoid medical jargon, acronyms,
and terms that have double or nuanced meanings.
And if the information
is more complicated,
use visuals when possible
in your explanations.
From a training perspective,
it's really sort of gauging yourself, like,
how much does the patient really understand?
But I had to go to urgent care,
because Mom thought it would get bad.
It got infected, maybe?
It didn't get infected,
but it looked like it was opening up.
-I see, okay. -When speaking with a patient,
allow extra time for the patient
to process the information and develop a response.
Simple, direct sentences are important
for those with communication difficulties.
Was there any pain during the procedure
-or afterwards? -Afterwards was fine,
and before that,
-a little scared. -A little scared?
-You were a little-- -I was scared
when I was first in the hospital,
they first registered me in.
Okay, you were a little anxious during that time?
Yeah.
Be sure to continually check for understanding.
If needed, use the caregiver as a resource
to ensure patient understanding.
-Can I ask Dad a question? -Uh-huh.
So, any other thoughts about what happened?
There's a little anxiety,
the touching part.
You don't like the touching part?
-No. -The exam, your exam.
My exam.
When you have your annual exam.
-How come? -It tickles.
(she laughs)
So, can I go ahead and listen to you?
I'm gonna put this on your chest...
-Mm-hm. -...is that okay?
Let me just slide this down.
It's always best to ask before touching
or assisting.
Some patients with ID may have sensory defensiveness,
which is a severe sensitivity to being touched
and usually involves an adverse reaction.
The person may respond by attempting to remove himself
from the situation,
by having strong negative feelings
about the activity.
Last time at the dentist was maybe she was 16,
so since then, nobody has seen her before.
After that, um, she doesn't let anybody
to touch her,
she doesn't brush very well.
A patient who is apprehensive
or unfamiliar with any medical procedure
can be reassured by the staff or physician
demonstrating how a procedure will look, sound, feel,
and what to expect.
Tell-show-do is typically what we do
for most patients.
So what we do is explain to them
what needs to be done,
so that's telling them.
So, for example,
you on your first time here,
I would tell you,
"Do you mind opening your mouth so I can do this?"
And sometimes,
because you have a lot of experience with it,
you know what's coming up next, you know.
If I'm taking the air water syringe
in your mouth,
there's going to be air and water.
But for some patients with intellectual disabilities,
they may not understand what the heck that is.
So I will tell them.
I'll go, "Look, this is my air water syringe,"
or "This is my tooth counter,"
and then I will show it on a less invasive location,
such as their hand.
So this is actually my tooth counter, okay?
-Uh-huh. -So, basically, if I--
can I borrow your hand?
So I'm actually gonna go ahead and touch it like this
and count your teeth like that.
Okay? Is that okay?
-Uh-huh, uh-huh. -All right.
Down you go, okay?
Explain in clear language each step of the procedure
before and during.
In procedures that are uncomfortable,
allow time for breaks.
Giving the patient as much control as possible
helps ease the situation.
So it's a very step-wise fashion,
little bits, you know, little step at a time
so they can understand what's coming at them,
and, you know, it takes time, it takes practice.
It takes a lot of patience is what it is.
It really behooves us to follow ethical and moral standards
to really check to see that your patient understands
the risks and the benefits of the procedure
that they're about to take on,
and to feel comfortable
that the decision is being made appropriately,
and that there isn't, you know,
a lack of understanding or a sense of coercion
or, you know, that you manipulate
their fear or their anxiety or anything like that.
You're due for a tetanus shot.
-All right. -Okay? How do you feel
about getting that?
I'm okay with that if it's necessary.
Okay. Do you know what tetanus is?
-No. -Okay.
So I want to explain so that you understand
-why you need it. -All right.
Tetanus is a bacteria that we protect people against
through vaccines.
When I first came here,
there was a tad bit of anxiety
but not a whole lot of anxiety.
What makes you nervous?
Not knowing what I'm consenting to.
Not knowing what to say.
Do you feel comfortable enough to ask Dr. Kuo
or the girls on the staff to explain it?
-Yes, yes. -Yeah, I thought so.
The familiar process of obtaining consent
ultimately rests with the patient.
I try to spend a lot of time with them
so that they hopefully do understand,
at least to a satisfactory level.
I also spend a lot of time with the family members
so that they can go home,
talk to them
independent of us being in the room,
and hopefully make an ideal informed consent.
Supported decision-making formalizes this process.
In your situation, your mouth is pretty small...
The presence of a supporter should not cause a physician
to question the decision-making capacity of a patient.
So if 10 is, like, the worst pain ever,
where are you?
As with use of a language translator,
the physician directs communications
to the patient first
and takes the patient's lead
in how and when to address the supporter.
...there's not enough room, so later on,
he may have to take some out.
The goal is to allow patients to maintain
the maximum appropriate levels of autonomy.
Patients with ID may use supported decision-making
by selecting one or more persons,
usually a family member,
to provide support in medical decisions,
such as simplifying medical terms
or assisting with expressive communication.
The default for many healthcare providers
is to require conservatorship,
also known as guardianship.
This is the most restrictive option
in regards to a patient's autonomy
to make medical decisions,
as it removes the patient's decision-making authority
and gives it to someone else.
It's important to really understand some of that
without just inserting our own opinions
and sort of weighing the pros and cons
for each individual family situation.
By improving your own awareness, knowledge,
and communication within this community,
you can help ease the health concerns
of adults with ID.
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There's a lot of doctors that don't know how to work
with special need kids,
and his other doctors that we've dealt with,
they know how to deal with special needs, um,
which hasn't been all his life an experience.
So it's--it's nice to find the right doctors
that have that right mesh
with the family and with the patient,
so it is good.
Do you have any questions for me?
-I'm fine. -You're fine.
-You're outta here, right? -You ready?
-Do you want your toothbrush? -Yes.
For more information on specific guidelines for using
supported decision-making in the clinic, visit:
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