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It was a minor thing, a detail that would probably have
gone unnoticed in most other situations. Lee Ann Hoffman, OT, MSc, was
on a seating & wheeled mobility team that was working with an adult client
named Alan, who had sustained a traumatic brain injury and been bed bound
for many years. Hoffman and the team, including Alan and his sister, were
working toward the goal of getting him out of bed and into a wheelchair.
Alan, Hoffman said, was in a “low-level consciousness” state. This made
it challenging for his rehabilitation team to accurately assess what movements
Alan could intentionally make.
Then one day, a staff member carried a cup of coffee into the room
where the team and Alan were working.
“[Alan] voluntarily turned his head towards the coffee,”
Hoffman recalled. Alan, she added, “was unable to take
liquids due to a compromised swallow,” but his sister told
everyone that he used to enjoy coffee.
“Bingo!” Hoffman said. Alan’s seemingly small act
of turning his head toward the aroma of coffee was “a
movement we were later going to capitalize on, and what
followed was the implementation of a switch.”
Such can be the challenge of working with seating & mobility clients with profound cognitive deficits. Many
clients are nonverbal, and even those who can speak or
communicate via an augmentative communications
device could be significantly limited in what they
can say directly. Their positioning challenges may be
complex, as are their medical conditions.
But these clients can still have a lot to say to the clinician or ATP who
takes the time to listen and knows what to look for.
Who Is the Cognitively Impacted Client?
The significant cognitive impairments that these clients present with
may have been present at birth or diagnosed soon thereafter, as is the
case with cerebral palsy. In other cases, clients developed and grew
typically, then sustained brain injuries or cerebrovascular accidents
later in life, as older children, teens or adults.
Lois Brown, MPT, ATP/SMS, channel manager of mobility & seating
for Invacare Australia, points out that even though clients with serious
cognitive involvement may have similar outward presentations, there
are so many possible reasons for their symptoms.
For example, she said, “You can be fully cognitively intact and not be
verbal, like a Locked-In patient. You can have someone who has good
cognition, but can’t communicate.”
Due to stroke or other injuries to their brains, patients with
Locked-In Syndrome retain full cognition, but are typically paralyzed
except for eye movement, and therefore are nonverbal.
“So you still have a problem, because you have to be able to find a
way for them to communicate,” Brown said. “When I first started as
a brain-injury therapist, I had a Locked-In client, and she just cried
and cried. If you looked at her, you’d think she’s just sad. She’s crying.
But actually, she had more of a frontal release, where the crying was
inappropriate. She cried at everything, even when she was happy. Some
stroke patients do this.”
Other clients, Brown said, have mild to moderate cognitive impairments
and may be limited in how well they can directly communicate
with the seating & mobility team.
And therein lies perhaps the greatest challenge when working with
cognitively impaired clients.
Making the Most of Language
Communicating with the client directly is most likely the best way
to determine if, for instance, a seating intervention is causing pain or
other discomfort. Certainly, discussing potential solutions and brainstorming
around any obstacles is critical to seating & mobility success.
Direct, comprehensive conversations won’t be possible with all
seating & mobility clients, but Brown said there are ways to make the
most of what these clients are able to say.
“If the client has mild cognitive impact, address the client with questions
with the family and caregiver present to verify or add additional
pertinent details that affect seating/mobility needs,” she advised. “Ask
closed-ended, yes/no questions, and verify that you’re understanding
their yes/no answers.” Though Brown acknowledged that these clients
“are not going to be the historian that gives you everything you need,”
she pointed out that they can definitely contribute, especially if team
members phrase questions optimally.
“Are you comfortable? Yes or no?” Brown said as an example. “Do
you have pain anywhere? Yes or no?”
Some clients aren’t able to directly speak, but can communicate
well via some other means. Brown said it’s important to tap into those
abilities from the very start of the evaluation process.
“If somebody shows up to a wheelchair assessment and they’re not
verbal, the first question is Is there an established method or system of
communication?” Brown said. “Is there eye-blink? Is it consistent? Is
it accurate? Or is it using thumb-up/thumb-down? Do they actually
have an iPad with communication software, or do they have an actual
communication device?”
If the client does have a communications device, Brown wants
the family or caregiver to bring it to the seating evaluation — and it’s
important to state that fact up front.
“I can’t tell you how many times I would be in the clinic, and the
family would show up and bring everything but the communication
device,” she said. “They would say, ‘Oh, it was just one more thing to
bring along, we didn’t think you needed it. We’re here.’
“I’d say, ‘It’s great that you’re here, because we do have questions for
you, and we do want to confirm the information that the client shares
with us. But we want to talk to the client directly as much as possible,
right?’ They didn’t always see the value in bringing that device or seeing
the importance of the individual having that voice.”
If there is no established communication system, Brown said it’s
worth trying to create one if the medical team believes the client would
be capable of using it.
Remember the Locked-In client who wept uncontrollably? That
involuntary behavior, Brown noted, incorrectly suggested the woman
had little higher cognitive function. But the rehab team set out to give
her every chance to disprove that outward notion.
“Nobody had set up any communication with her; they just thought
there wasn’t anything going on [cognitively], and she was just crying,”
Brown said. “We ended up putting a flashlight on a baseball cap, put the
baseball cap on her head, gave her an ABC letter board, and she started
typing out to her husband where the safe and the important papers
were in the house because she was convinced she was going to die
before she could tell him.”
Observing Nonverbal Clues
Of course, the even greater challenge comes when the client is not
reliably communicative in any way.
“But if they’re nonverbal, you at least have to find that out,” Brown
said. “If they’re cognitively intact, there’s more likely to be an established
system of communication. If they’re nonverbal, but there’s mild
cognitive impairment — that’s really hard to figure out. The most
important thing is to not assume someone cannot participate.”
In these situations — when the client is not able to directly give input
into what he or she is feeling, thinking, experiencing or desiring — the
importance of input from family and caregivers becomes even more
important, says Hoffman.
“The answer to the majority of questions can be answered by including
the family and the caregivers who assist an individual with profound
cognitive deficit,” she said. “I usually refer to the family and the caregivers
as the true experts. They know the individual like no one else.”
Families and caregivers who spend hours every day with the client
have usually learned the nuances of their behaviors, facial expressions
and body language.
“I have asked the family: You say, ‘Blink once for yes, two for no.’
Sometimes the client blinks and blinks and blinks, and you’re not
sure that they even understood your directions to have an established
communication. The family is going to know best. If you’re really good
at what you do, you lean on the people who spend the most time with
that individual and know their communications system. Sometimes
the aide knows better than the family because they spend more time
with them, and they can identify when it really is a yes and really is a
no. I think it’s making sure that you have the primary caregiver or the
primary family member who spends the most time with that individual
at the evaluation or at the assessment.”
Brown has also monitored clients’ physical conditions while trying
different seating systems and looked for clues in how their bodies
responded.
“You could even go so far as to look at blood pressure and heart rate,
because I’ve done that,” she said. “If you have somebody who begins to
profusely sweat, you could have somebody who’s having an episode of
autonomic dysreflexia from what you’re doing. You could be putting
them where they’re getting pressure behind the knee as you’re trying this
new system, or maybe they’re sitting in a way that’s been causing them to
have that reaction. Is it autonomic dysreflexia, or are we actually giving
them a painful stimuli to where the body is reacting to that?”
Brown recalled working with a client who was so medically vulnerable
that her group home administrators insisted she keep a pulse
oximeter on her finger as Brown was doing the seating evaluation.
“Someone had plaster-casted her,” Brown said of the client. “She was
molded from the top of her head to the back of her knees in a shell. They
took a mold of her body and made a shell and strapped it to an upright
manual wheelchair. She was almost lying down in recline with a really
open hip angle in this chair.”
Brown and the seating team brought in a tilt-in-space manual chair
to try. “We didn’t open the back as far, because after we got her out of
the mold, she literally bent forward at the hips. She had certainly more
of a neutral pelvis and trunk angle, an upright trunk.”
All this time, the pulse oximeter stayed on the woman’s finger as
staffers from the group home watched. Brown and the rehab team had
been told to call 911 if the woman’s vital signs dropped to dangerous
levels.
“So we put her in the [wheelchair], and in no more than a minute,
her pulse ox was going up,” Brown said. “When you’re upright, your
diaphragm actually has excursion and increased inhalation, and that
increases oxygenation through the lungs and through the body.”
The aide, Brown recalled, was astonished and sputtered that this
client’s oxygen saturation had previously only registered in the 80s. But
sitting in a wheelchair without her cast on and in a more closed back angle, the woman’s oxygen saturation rose into the 90s.
“If I could have filmed the look on the aide’s face,” Brown remembered. “I said, ‘Well, we just sat her up.’ Just watching vitals could be a
great way to assess someone.”
Getting to Know Your Client
Hoffman believes another key to a successful seating & mobility
outcome is learning as much as possible about your clients. That
includes the ones who may no longer be able to speak well for
themselves.
“It’s my mission to learn as much as I can about the individual,” she
said. “They are a person, after all. As clinicians and therapists, it must be
our goal to create opportunities at every meeting and appointment to
get to know, understand and appreciate the individual. This means not
just the formal evaluation and assessment stage. I am referring to every
single opportunity you get, as formal or as informal as the opportunity
which presents itself.”
For Hoffman, every interaction with the client is a chance to add to
the collective information that the rehab team might be able to draw
on later. “I make a point of talking with families and caregivers. It may
look like small talk, chit-chat — okay, some of it is, as I am genuinely
interested in people. [But] this curiosity is what drives me to find out
more about the individual. Often the person with profound cognitive
disability was a ‘fully functioning person’ with likes and dislikes,
hopes, wishes and aspirations. No different, just because of a diagnosis
of profound cognitive disability.”
To the outsider, this sort of conversation may seem casual. But
Hoffman said she uses these discussions to gather information that
could help her during the seating & mobility evaluation.
“I ask those who know the person best questions like ‘What makes
William happy, sad, angry? How do I know if William is unwell,
anxious, in pain?’”
Hoffman also asks about the client’s typical behavior so she can
distinguish it from new responses during the evaluation.
“It is vital to find out what routine the individual has at home,” she
said. “When is medication time, when is meal time, when do they take
a nap? This can give you clues into what to expect when working with
individuals with profound cognitive disabilities who have difficulty
with communication. Non-verbal [cues] are a huge clue when working
with individuals with profound cognitive disabilities. I am always on
the lookout for any little flicker of nonverbal [behavior], and then I will
ask the family and caregivers to be the interpreters: What does that face
mean? Does this face mean she is comfortable? Does this face mean he
is hungry, as we are nearly at meal time?
“Individuals with profound cognitive ability know what their
routines are. I don’t know how or why, but they just do. They know when you get them out of their chair and place them on the mat for
an evaluation that it is not bed time — and ‘Why are you putting me
in lying down position when it is 11 a.m.?’ is the sense I often get from
nonverbals. I chuckle to myself when families and caregivers usually
confirm, ‘Yes, Angela is usually in her chair and we are going for
country walks this time of day.’”
Hoffman added, “So it is everyone’s job in the seating team to make
sure they have a good understanding of how things are done at home
or the individual’s primary place of residence, where they feel safe,
comfortable and familiar with their surroundings.”
Preserving & Optimizing Independence
What should the goals be for a client with profound cognitive deficits?
Should those goals be any different versus those of a client without
those deficits?
Brown indicated she doesn’t automatically disqualify clients with
significant cognitive impact from the same seating & mobility goals she
has for other clients. As an example, she described a former client with
cerebral palsy.
“She had mild mental retardation, and she was an older adult,
around 55,” Brown said. “She came in for a wheelchair assessment,
and [her aide and the wheelchair provider] said, ‘We just need another
[dependent] manual wheelchair. She’s in a group home.’”
The woman, Brown said, was capable of basic speech.
“She said hi. I said, ‘How are you?’ and she said, ‘Good, good.’ Not
much, but she does verbalize. The group home aide was there, and the
RTS. I had this instinct, and I pulled over a basic power wheelchair and
said, ‘Guys, will you just indulge me for a minute?’ I put her in the chair,
and she could drive it. She could do stop/start, and she could turn. Was
she 100 percent? No, but she’s in a group home, supervised, all the time,
and could drive to her bedroom, to the kitchen, or take herself from the
kitchen to her bedroom when she felt like it.”
Brown felt that independence was absolutely worth preserving and
encouraging.
“To me, it makes all the difference in the world for that person to be
able to have any level of independence. If you haven’t really looked at
all the options, you could easily make an assumption that would have
negated or limited someone’s abilities when they very easily could have
had more independence. It could be easy to overlook it.”
Brown recalled another client who was also in a dependent manual
tilt-in-space chair. “I said, ‘What about power with tilt? I think he has
the cognition to do it.’ And they said, ‘We understand that, but right
now, he’s on a behavior plan at the brain injury long-term care facility,
and we would be concerned about his erratic behavior and being a
danger to others. We’re asking you right now not to introduce power.’
Even though he had more physical mobility capabilities to drive the
chair, it didn’t fit with his behavior and his behavioral plan. So it can go
either way.”
Even for clients in these situations, however, Brown is a proponent
of considering autonomy as much as possible. For example, a client
who is unable to safely drive a power chair might still be able to control
powered seating options independently.
“Behaviorally, it might help him to feel like he has some control over
what he does and how he sits,” Brown said. “Maybe he’s just so frustrated.
[Operating powered seating] would give him the ability to get
in and out of tilt and recline, almost a rocking, calming [motion]. You
can put the power chair in no-drive and only give him the tilt/recline
access, or access to the communication device.”
Brown acknowledged that acquiring funding for a power chair that
the client can’t drive himself can be difficult. But she pointed out that
it’s worth checking for alternative sources — such as a private trust
fund or funds earmarked for that client at the group home — if it would
mean the client could control some of the chair’s functions, such as
weight shifting for pressure relief and comfort.
“Think about an ALS client: They’re advancing, and their precision
with driving is decreasing,” she said. “So let’s leave them with powered
seating. They’re going to sleep in their chairs now, at the end of their
lives, and they should still be able to hit a button for calling someone or
their communications device. So give them access to those.
“I think that’s important. You’re maintaining whatever level of
independence, no matter how small we think it is. It can be very big and
important to that individual.”
Celebrating Quality of Life
Ultimately, no seating & mobility system will completely compensate
for the clinical complexity of profound cognitive impairment. But
there is still much that can be achieved by the seating & mobility team
willing to push boundaries and push through expectations.
“On the topic of stimulation,” Hoffman said. “if we continue to
include and involve individuals with profound cognitive disabilities in
tasks which require their activity and participation, who is to say that
one day a dendrite won’t sprout, a synapse won’t be made, a connection
won’t be made, or a window of opportunity won’t be available? I am
always on the lookout for ways to meaningfully include the individual
in all aspects of their lives.”
Hoffman also pointed back to the main goals of all seating & mobility interventions, regardless of a client’s physical or cognitive
condition.
“The main emphasis of any seating & mobility intervention is threefold:
comfort, function and preventing secondary complications. All
seating & mobility goals must align with promoting function — and
here, I am referring not just to physical function, but also to internal
function, such as respiration.”
Hoffman insisted that clients with profound cognitive deficits are
clients first — and therefore not so different than clients who have
cognition completely intact.
“We are all inherently different,” she said. “Those unique things that
make us us are still important when working with individuals with
profound cognitive disabilities. Don’t dismiss them.
“Quality of life is so individual, and specific to each person. Quality
of life is the ultimate aim of any intervention and rehabilitation. Who
are we to decide about ‘quality’ of life?”
