Case Study: 20 Years of Lying in Bed

Picture this: England 2013. The telephone rings. I am
asked to assess and provide seating for an individual who just
happens to have been in bed for the last 20 years.

Is something like this even possible? Yes — it is!

Let me set the scene. Twenty years of lying in bed translates to
approximately 175,200 hours spent solely in the postural orientation
of lying. This situation was complicated by unsupported lying
against the natural forces of gravity. There had previously been a
myriad of diagnoses that resulted in extremely limited mobility and
consequently, an inability to move out of harmful postures.

PHOTOS COURTESY THE AUTHOR, ALAN TOMBS, JULIA BROWN & SEATING/MOBILITY TEAM

Despite being in bed with no sleep system for 20 years, in less than five months, Alan progressed to trying a sleep system.

Would this assessment reveal the “human sandwich” effect identified
by Hare in 1987? Prolonged immobility often leads to shortening
of muscles, leading to contractures compounded by the
forces of gravity and the reactive force of the supporting surface.
Would I see an established “preferred posture” as described by
Pope 1991, where the body returns to its habitual position, after
correction? Yes — to all of the above!

Getting Started: The Assessment

Pope identified a strong correlation between the postural presentations
found in lying — due to physiological tissue adaptation
— and the postural presentations found in sitting and standing.
Therefore, to establish seating needs, a comprehensive and thorough
assessment in lying would be absolutely necessary.

For my assessment tool, I used the Oxford Centre for
Enablement (OCE) Management of Physical Disability 24-7 (MPD
24-7) because this assessment form is closely linked to the core
values of the International Classification of Functioning, Disability,
and Health (ICF) (WHO 2001). The MPD is the assessment tool that
highlights the need for 24-hour posture management. This tool
was extensively used to identify the critical joint ranges which, in
turn, would heavily influence postural options in lying and sitting.

Twenty-four-hour posture management (PM) focuses on the
three main postures available during a 24-hour period: lying, sitting
and standing. The fundamentals of PM are promoting comfort,
function and seeking to reduce secondary complications associated
with poor posture, such as pressure areas, contracture, deformity,
pain, difficulties with breathing and respiration.

This requires a holistic team approach, so using rehabilitation
engineers, physical therapists (PTs), occupational therapists (OTs)
and specialist rehabilitation nurses, we set to work.

PHOTOS COURTESY THE AUTHOR, ALAN TOMBS, JULIA BROWN & SEATING/MOBILITY TEAM

The cast process: Note open hip angle to accommodate loss of hip flexion ranges on
the left. By “dropping” left lower limb to accommodate hip range, and allowing the
right to assume a comfortable range of flexion, a stable base was created for sitting.
A Chunc mobility base was the “cast chair.”

Making Progress: Slow & Steady

Axiomatically, Alan and his nuclear family members were at the
center of the team and formed an essential support mechanism.
Where to start? Having established Alan’s critical joint ranges
and also where accommodation would be required due to a
number of established postural deformities, the first step was
positioning in lying. After the trial and implementation of a sleep
system, with the aim of providing a stable posture in lying, a better position for feeding, pressure care, promoting general health and
enabling nursing needs had to be addressed. We had taken the
first step down a very long road of rehabilitation.

The aim of creating and providing Alan with a custom sleep
system was to prevent further postural deterioration, and to
promote postural orientations that are aimed toward symmetry. In
Alan’s case, it was also to prepare him for another critical part of the
24-hour PM intervention, namely sitting.

The next very important consideration was related to sensory
systems, such as the vestibular system. Careful and graded raising
of the head of the bed to simulate a more “vertical” than horizontal
plane, with continuous observation for factors such as postural
hypotension, was undertaken. Alan’s tactile system also had to be
addressed, as he had not worn clothing in 20 years of lying down.

This was a significant milestone for all concerned!

By achieving an orientation other than horizontal, the Reticular
Activating System (RAS), the brain’s “generator,” could now be fired
up. There are numerous studies providing evidence that when a
person is upright, a natural increase in awareness occurs. Being
in an upright posture serves to stimulate the RAS in the brainstem,
and allows for more alert and engaged interactions. The
RAS is affected by many types of stimuli, especially the vestibular
and proprioceptive changes that occur during more “upright” or
“vertical” postures when compared to those in a horizontal plane.

This new postural gain presented an excellent opportunity to
the neuro-OT for her expert assessment. The Sensory Modality
Assessment and Rehabilitation Technique (SMART) was selected
as the most effective clinical tool. This tool was pioneered at the
Royal Hospital for Neuro-disability (RHN), United Kingdom, in 1988
and is used for the assessment and rehabilitation of people with
disorders of consciousness following severe brain injury.

PHOTOS COURTESY THE AUTHOR, ALAN TOMBS, JULIA BROWN & SEATING/MOBILITY TEAM

Custom carved-foam system: separate
seat and back. Ventilation holes aid heat
dissipation. Custom covers (left) drape
over the side of the seating.

Next up was a customized seating system. Even without assessment
findings, it was clear that Alan’s seating options would be in a
totally different galaxy from “normal,” modular, off-the-shelf products.
The only solution was custom-molded seating. You can never
have too many hands during any custom mold capture exercise,
and this case was no exception. Careful consideration was given to
the choice of materials. I have
included a guide for material
choice selection by Aburto and
Holbrook (2009) in References.

With absolute comfort in
mind, foam was selected as the
material for the seating system.
Of maximal benefit was that
the foam material could meet
the specific curves and shapes
where accommodation was
required, and that it would be
“kinder” to such a delicate and
fragile individual as Alan.

A separate seat and back
were created to allow greater
postural variation of positioning
as needs changed with time.
The initial seat cast allowed
for a very open hip angle. A
well-documented, negative
quality of foam is that it is a heat
insulator. Therefore, holes were
made in the back support to
allow some ventilation, in addition
to a heat dispersion fabric
integrated into the seat cover.

Pressure mapping assessments
and ongoing reviews
were also undertaken to determine
the effectiveness of the
custom shape and the material
choice with regard to pressure care.
Padding was added to the individual foot plates of the wheelchair
to protect Alan’s vulnerable feet, which were fixed in contracture
in the plantar-flexed position.

PHOTOS COURTESY THE AUTHOR, ALAN TOMBS, JULIA BROWN & SEATING/MOBILITY TEAM

Custom seating system on a manual
mobility base: custom upper limb wraps,
bilateral. Custom foot padding on footplates.
Hoist sling seen in photo.

I included a picture of the finished custom seating system, with
covers draped over the system, on a manual wheelchair mobility
base. The mobility base offered a large degree of posterior tilt and
accommodated the back support in a reclined orientation without
affecting the stability of the system.

Soft custom wrap supports were added to encourage better
upper-arm placement. The thought was that we would make
gravity our friend to assist in addressing upper-limb positioning.

As part of 24-hour PM, all postural orientations available to a
specific individual need to be addressed. As only lying and sitting
were available to Alan, both orientations had now been addressed.

See how it all turned out — including how bathing issues were
tackled — in the August issue of Mobility Management.

Thanks to Alan Tombs and his sister, Julia Brown; Phil Swan and Zeeshan
Shafi from Contour 886; Bridget Churchill from Life4Living; Janet Radcliff from
Symmetrikit; and the QA Unit Rehabilitation staff, United Kingdom.