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SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 +(

When a person has a
progressive disorder, what
lies behind their social
smiles and reassurances?
How do they feel when
solid, reciprocal social
support networks are
shattered by communication
breakdown? Drawing on
quotes from her qualitative
research, Margaret White
argues that the deep
despair and pain she found
tells us much about the
need for support and why
we should be actively
facilitating and offering it,
even when traditional
therapy has ended.
f I could still talk properly Id be more out-
going, as I was before. I could cope with the
physical problems if I could talk to people.
Its changed my life completely.
The progressive loss of both communicative and
physical abilities has implications for all aspects of
a persons life. At many points in the progression,
whether it is fast or slow, the onward march of
deterioration in communication causes feelings of
desperation. As part of a Masters course I carried
out a study into the views of people with pro-
gressive disorders and their carers about the loss
of communication, and what I learned personally
was almost more important than what I learned
academically. There emerged a real understanding
of the sufferers deep despair and pain at their sit-
uation, concealed by social smiles and reassurances.
Without exception, all felt that they could cope
with the physical loss if speech had been spared.
Most of the people I talked to had been known
to me professionally for some time - some
months, some years - and I watched as their con-
tact with their world was gradually eroded by the
loss of communication.
There are only two of us who understand her
reasonably well, and even then we have to
resort to the alphabet chart or the frame, but
they are too slow and she gets very frustrated.
Communication is about contact. Contact with
groups at work, groups of friends, groups of
acquaintances, groups joined together by interests,
groups joined together by relationships. People
will use communication aids because it gives them
something - but not what they really want.
What they really want is the ability to discuss,
argue, make jokes, sympathise, talk through
problems and emotions. What they want is the
quality of life they had previously. It may not
have seemed a world-shattering lifestyle, but the
more of it they lose, the more precious it becomes.
What they want is a return of not only functional,
but also social and emotional communication.
The carers are good with her, but she is unable
to tell them things, even simple things such as
her leg in the wrong position, or her neck hurt-
ing, and they dont have the time to wait for her
to try and use the communication aids.
Functional communication can help us order
and control our world, but eventually control may
be severely limited or impossible. Werner-Beland
(1980) says she felt the need to control events that
were happening to her - it is the awareness of
ones inability to control events that produces fear.
Wilkinson (1999) also agrees on the importance of
control, because in its absence, the traveller feels
alone and at the mercy of those who do not hear.
But the worst part of it all is not talking. I used
to enjoy company, and having a good gossip.
Control is only one element of communication.
Functional communication with which to control
our environment is important, but would that
alone make us feel any less despairing? I think it
goes deeper than that. People told me it was
more about being in contact with their world in
the way they had always been.
I
Nothing
more
to offer?

SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 +

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Social communication is important because that
is the way we have organised our lives, our
groups, our contacts. It is how we define our-
selves in terms of others and the world around us.
Emotional communication is utilised in times of
trouble. At some point most of us have issues
which we feel a need to discuss, if only to make
sense of them in our own mind. We may talk to
family, friends or even counsellors.
We used to have friends, but theyve gone off
now because I cant talk to them. We used to go
out to relatives houses for dinner quite a lot,
but we dont go now because I cant talk properly
and its too difficult.
Social and emotional communication are gradu-
ally lost in progressive illness, with the certain
knowledge that they will never return. Initially,
people have to resort to contact at second-hand
through their main carer who, in effect, becomes
their translator, their bridge to the outside world
- and there is no possibility of everyday chat or
emotional confidences with others. Once the
translator is unable to communicate with them,
their isolation is complete.
As a therapist it is very easy to feel daunted by
this. After all, what have we to offer? To answer
we need to take a step back, not to see a
dysarthria needing therapy, but to see the person
with the dysarthria. We can sometimes get too
bogged down in the specific problem without
seeing the overall view. We should not only be
dealing with the problem but with the way this
affects the person, their groups and the way
they live their life.
While doing the literature search for my study,
almost all the papers I found which asked people
with progressive diseases about their quality of life
specifically excluded those with communication
problems. Most of the ones dealing with the
dysarthrias were simply about measuring and classi-
fication. Yet one particular piece of research found
that what was most valued by many people with
progressive disorders was a) talking and b) relations
with family and close friends. So perhaps we should
spend more time looking at what is more important
from the patients viewpoint than from our own.
We hope were working with it the best way we
can, but every now and again probably she goes
away and cries a little tear and I do the same.
Benner (1985) stresses the need to look at lived
experience, not just specifics. The experiences of
health, illness and suffering are trivialised by ana-
lytically separating the mind and body, and by
using research strategies that systematically
exclude the lived meanings of those experiences.
It is vital that we see how people make sense of
their illness and live with it day by day in order to
offer relevant and meaningful input to improve
their quality of life.
Seedhouse (1995) talks about health, not in a
medical context but in relation to the way people
live their lives, and their ability to achieve their life
goals; a person can be diseased and yet healthy if
the platform on which they live their life gives
them the opportunities to achieve their goals. The
only goal many people with severe progressive
disorders have left is to live as full a life as possible
for as long as possible and, if we can find some
way of reducing their isolation in order to allow
this to happen, we will have done our job well.
One of the ways of improving a persons plat-
form is by utilising their system of social support,
something to which most people belong in different
ways. There are as many therapists of all disci-
plines who say support is our job as those who say
it isnt. Perhaps we ought to define what we
mean by support and look at it more objectively.
There appear to be four areas of social support
(Langford et al 1997):
1. Instrumental - tangible aid or concrete
assistance
2. Informational - communication which assists
problem-solving
3. Appraisal - communication which helps the
person self-evaluate, and affirms their decision
making
4. Emotional - this imparts liking, admiration,
respect, love, and is probably the most
important way in which support is perceived.
Weve got a daughter and grandchildren, but
they dont have much contact with us. Shes got
a brother and sister locally, and another sister in
London, and nobody comes to see her, not even
her mother.
Social support is described as an exchange of
resources/reciprocal supportive actions, and, where
the patient has supported others in the past, they
will now be supported in their turn. With many
patients, their network of support - their groups -
gradually erodes until there are few left who can
provide this reciprocity. Even if they have a large
network where reciprocity has worked for many
years, we know that communication breakdown
can cause the best of relationships to founder.
As therapists we provide instrumental and infor-
mational support in obvious ways, but perhaps
also emotional and appraisal support in not so
tangible form - almost as a by-product if you will
- while providing what is seen as being our job.
When it comes to the stage of being unable to
provide obvious therapy we may consider we
have nothing more to offer. However, from the
patients viewpoint at that time, emotional and
appraisal support to help them think things
through and make decisions may actually be more
important. That we respect their feelings and
decisions is the way in which their self-esteem and
continuing sense of self is confirmed. Perhaps
there are two ways we can deal with this:
a) supporting and training the network which
exists, to help members deal with the communi-
cation breakdown, and
b) continuing to provide support ourselves.
I dont try to speak to people other than the
family because I know they wont understand,
and I feel frustrated and embarrassed by that. I
think it must be difficult for them, because they
think Im mental and they dont know how to
respond. Then that makes me upset and angry
and I know theres no way round it, so Id rather
just not get into the situation.
you want to
add e to years - or even days
get maxmum benet or your
cent rom contnuty o care
earn rom persona reectons
on academc research
Read ths
It is vital that we
see how people
make sense of
their illness and
live with it day
by day in order
to offer relevant
and meaningful
input
to improve their
quality of life.
Photos courtesy of the Motor Neurone Disease Association
proessona roe
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 +
As for reciprocity, my reward is a much deeper
understanding of how the strands of communication
impairment permeate every aspect of life, and I
feel respect and deep admiration for these people
who are coping with unimaginable horrors. Our
worlds are all separate, but interwoven; some
closely, some loosely, but we all ultimately live in
our own world and have to face our own death.
We may all have our chosen preference for how
we die - few of us would choose a progressive dis-
order in which we have to come to terms with a
series of never-ending losses which leave us more
and more at the mercy of others.
Weve discussed resuscitation and alternative
feeding and I know she doesnt want it.
This can place a burden on
therapists. We need to address
our own beliefs without being
caught up in individual issues of
morality. Offer communication
support within an ethical frame-
work but remain objective.
What is really important is that
our patients be given all infor-
mation as soon as they feel
ready for it, because without it
they relinquish all possibility of
exercising control over their
lives by making their own choices.
Unless this is done while there is
still some form of communica-
tion available to them, there is
no longer even the choice between discussing the
issues or ignoring them. For example, decisions
made about end-of-life issues are not made at
one point in time, but evolve through discussions
over a period of time. Late decisions about these
issues made under stress may not always be the
right ones, and it may be that earlier discussion
and planning while the person is still able to do so
with some degree of control could eliminate
much distress in the terminal phase.
All members of the team should be supporting each
other in this, and providing the same information,
and all therapists who work alone with these issues
should seek out and find their own support. This is
not something which should be managed alone.
Hes fought this all the way, but he wont talk
about it. I dont know what his final wishes are
and that makes it very difficult for me because I
wont know if Im doing the right thing or not. I
would advise others in this situation to try to
make them talk about important issues. I was
too emotional at the beginning and I didnt
realise how important it was.
The way people cope with a terminal progressive
disorder is largely a result of their personality, and
not everyone will want to discuss it - but everyone
should be given the opportunity.
I acknowledge that all this is often being done
in varying degrees. However, it is often done with
hesitation, and with a feeling that this isnt my
When communication breaks down or is difficult,
both parties are often feeling acute embarrassment
and guilt. Listeners find problems dealing with
those whose communication is impaired, and the
speaker then feels guilt and self-blame for the
lack of understanding.
Our next door neighbour comes in less and
less now because she says she feels awful because
she doesnt know what shes saying and has to
keep on saying Pardon? She says she feels a
coward, but doesnt know how to cope with it.
As therapists we know communication is a two-
way process but we still put all the pressure on the
person with the problem. What about the other
half of the equation? Perhaps we should spend as
much time - or more - working
with the persons translator and
groups of communication part-
ners to help them understand and
cope with their feelings of inade-
quacy, as we do trying to help the
person find ways of communicat-
ing. In this way maybe we can
reduce the amount of isolation
the person suffers.
As professionals, we are seen by
patients as having a knowledge of
the disease and an understanding
of how they are feeling. Many
times, I find that patients will talk
to me about things they would
never discuss with their relatives
and friends for fear of distressing them.
One lady recently recalled a stored sentence on
her Lightwriter after her daughter had left the
room, when I asked her how she was really feeling:
When I tell them Im wet and they say to me in
that loud voice that Im not, I want to say Im not
daft, or deaf, or stupid and my brain is working
fine. I want to tell them to try and imagine what
it is like to have no use in their arms or legs or
body and no speech, and to be looking down a
long dark road with no light at the end.
These things had never been brought into the
open before, and she had been unable to discuss
her feelings. She may not always wish to, espe-
cially with the family, but she knows that when
she sees me she is free to do so. To me, that is a
valid use of my time, as it would be to every other
member of the team with whom I work.
Talking though feelings with someone who listens
sympathetically while remaining objective will assist
problem-solving, help the patient to self-evaluate
and make decisions, and confirm them in their self-
worth. Sometimes all that is needed to help come
to terms with things is to talk it through with some-
one who understands the problem. That is why the
opportunities to do so must be provided while
some communication is still possible.
If I had to say how I cope in this situation I
would just say that I use bloody-mindedness to
fight it. I wont be beaten.

job. Because we work closely with people in the

earlier stages of disease, we build relationships
which become important to both, and eventually
speech and language therapists may be one of the
few contacts these people have who do not feel
embarrassed, ashamed or guilty for not under-
standing their attempts at communication.
Sometimes, we may even be the only ones who do
understand them.
You cant let it take over all the time, but there
are times when I could break my heart crying for
him. Now, Ive adjusted to it, because there isnt
any choice. Its like having children, isnt it? You
just mop the sick up and carry on.
Margaret White is clinical lead for adult
progressive disorders at Mansfield and
District pct, Nottinghamshire, and works as
a member of the multidisciplinary team at
Chatsworth Rehabilitation Centre. This article
is based on a small scale research study
involving in-depth discussions with both
patients with progressive diseases and their
carers. Some quotes are verbatim, while
others are expanded from phrases which were
necessarily brief due to severe communication
problems. In all cases the meaning of the
communication was validated by the patient.
References
Benner, P. (1985) Quality of life: a phenomenolog-
ical perspective on explanation, prediction, and
understanding in nursing science. Advances in
Nursing Science 8 (1) 1-14.
Langford, C.P.H., Bowsher, J., Maloney, J.P. & Lillis,
P.P. (1997) Social support: a conceptual analysis.
Journal of Advanced Nursing 25 (1) 95-100.
Seedhouse, D. (1995) Fortress NHS: A philosophi-
cal review of the NHS. John Wiley & Sons.
Werner-Beland, J.A. (1980) Grief responses to long
term illness and disability. Reston Publishing Co USA.
Wilkinson, S. (1999) Schering Plough Clinical
Lecture. Communication: it makes a difference.
Journal of Advanced Nursing 22 (1) 17-20.
White, M. (2001) A qualitative study of the views
and perceived needs of adults with progressive
neurological disorders and their carers: A focus on
communication. Submitted in part fulfilment of
the regulations for the MSc CPD (Health)
University of Greenwich (Unpublished).
Resources
Lightwriter is available from Toby Churchill Ltd,
Cambridge.
Do l know the derent soca groups my
cent s part o, and see therapy n ths context'
Do l oer nstrumenta, normatona,
apprasa and emotona support to cents
as approprate'
Do l seek support rom eow team members
and other sources when my work s
chaengng'
Reectons
Many times, I find
that patients will
talk to me about
things they would
never discuss with
their relatives and
friends for fear of
distressing them.