The ethical perspecitive of the occupational therapist after
the acute stage of rehabilitation in brain injury
This piece of work has presented me with many ethical dilemmas
along the way. They can be divided into those that were concerned
with systemic issues and those that were to do with the day to
day running of a life for Barry. The first set I responded to
by becoming increasingly committed to the work being done by the
local Head Injury Society, which attempts to address the big picture.
The latter issues I responded to in a different way which changed
over time.
A focus on justice and accountability when working with severe
brain injury
As a beginning point, I wonder often about the justice of a system
where the manner of developing a particular disability is the
critical point in terms of compensation. The person with traumatic
brain injury is compensated adequately, whereas the person with
a similar prognosis which was the outcome of a subarchnoid haemorrhage
gets virtually nothing. And even within the field of traumatic
brain injury there is not a level playing field. Two people with
similar injuries will be compensated very differently depending
on whether they have a family with the resources to advocate for
them. Yet even in the case of success, in a system where all the
odds were stacked against them, the story is one of injustice.
Barry lost at least 6 years of his life unnecessarily while his
family fought for the resources that would allow him a measure
of dignity. If the process had been less extended he would be
much further down the track today. Many of his needs were created
by the state of limbo in which he found himself for all those
years and the ethics of the system - where even the ‘winners’
become losers too -seem very questionable.
Once this public money has been won, I have been surprised and
concerned at how little monitoring there is of how it is spent.
There should never be a situation where public money is spent
in ways where there is no accountability and a Trust is one way
of ensuring that funding is used in the spirit in which it was
intended. The setting up of a Trust on Barry’s behalf has
been an important part of how the family have set about protecting
him both now and in the future. Ironically, the insurance corporation
chose to fight them on this action. Yet the setting up of a Trust
is an excellent model for how this kind of work might be handled
in the future.
The one aspect of the case where I have seen reasonable financial
monitoring by the insurance corporation is where therapists have
been employed. Yet, the highest hourly rates in the country for
therapists are gained by doing the insurance corporation work,
which begs the question immediately of whether the funding is
being used to benefit the person with the head injury, or the
professionals. In the struggle for funding which will really benefit
the person with brain injury, therapists have come to benefit
financially to a huge extent. Alongside these (relatively) high
hourly rates there is less accountability than ever because of
an assessor/provider split. So, although there is some financial
accountability I would argue that therapists have been put in
a position where there cannot be real accountability in the sense
in which I talk about it below. I have come to question the whole
way that therapists are being used in this situation.
There were many other questions which were more directly related
to the situation in which I was working. The question of ‘what
shall we now do’ is the same question that brings us as
human beings into a profound relationship with ethics as soon
as there is any choice about the matter. In answering this question
for myself I bring my part history, my values and beliefs, in
attempting to do what is ‘right’. In attempting to
answer this question for Barry I have had to interpret, from my
understanding of him as a member of a particular family, at a
particular point in his life, just what is ‘right’
at this point in time for him. I was not able to take refuge in
any facile notion of ‘client centredness’, since if
the answers to this question were readily available there would
have been no need to employ me. However, I was protected by the
degree of accountability which I brought to this work. I was closely
connected to the family, the care system and to Barry himself
and I knew that if he suffered that we would all suffer alongside
him.
Ethical practice for the occupational therapist involves enabling
the person with severe brain injury to succeed in the tasks which
are undertaken
There is one way in which an awareness of ethics as an occupational
therapist had a daily impact on my work with Barry. This was in
my approach to the activities being done. I was convinced that
he had to experience success, because what he needed in his life
at this time were the fruits of success. Every activity therefore
took on a profound ethical meaning which I had to comprehend,
or risk breaking the flow which I was trying to achieve for him.
I could not countenance anything but success and this meant that
things had to be finished. I could not afford to allow someone
so damaged through severe brain injury to continue to experience
a sense of futility or failure.
An understanding of the activity also implies an understanding
of the ethics which are completely bound up with it. It could
be as simple as whether one allows a cupboard to be hung incorrectly,
or whether you ensure that it matches the other cupboard doors.
From the point when the activity is chosen, right through to the
completion of the task there are endless ethical questions, and
also in how one responds to the outcomes of the task. Baking is
an easy to understand example. It is first necessary to understand
whether the situation demands baking and in deciding who the baking
is being done for there are already ethical decisions being made.
The decision to wash ones hands out of respect for those who will
eat the baking is another such decision. Paying attention to the
recipe is an ethical task, because otherwise it will be a failure.
The task could be broken down even more and one would find that
at every point there was some minute ethical issue at stake. After
the baking is finished there are decisions about the ways that
it is shared, and also how it is responded to in the long run.
Will the person be thanked and remembered for their part in the
baking? How will this experience connect with other baking experiences?
I may seem to be labouring the point, but it is in the ethics
of the experience that one begins to recognise the commonality
of the experiences. I draw on the dictionary definition at this
point:
Ethics 1. A system of moral principles: the ethics
of a culture. 2. The rules of conduct recognized in respect
to a particular class of human actions or a particular group
culture, etc.: medical ethics; Christian ethics. 3. Moral principles,
as of an individual: His ethics forbade betrayal of a confidence.
4. That branch of philosophy dealing with values related to
human conduct, with respect to rightness and wrongness of the
motives and ends of such actions.
-
Webster’s Encyclopedic Unabridged Dictionary of the
English Language (New York: Random House, 1989).
It is clear to me that the interpretation of ethics within everyday
ordinary activity fits well within this definition of ethics.
The etymology of the word “ethics” goes back to the
Greek ethos, meaning “cultural custom or habit”. In
this sense it is in ethical activity that we come into relation
with one another, and it is our ethical concern which ensures
that we behave according to custom. This concern with a commonality
which draws people into relation with each other is at the very
heart of the way that I have been trying to work.
Once activities were designed to bring Barry into relationship
with others there were other questions to be faced. He undertook
to help an old lady and he really did have to help her. There
was no point in doing things which she did not need, there could
be no element of wasting her precious and tiny resources. The
implications of failure in this situation began to be much more
momentous, but it was worth it to bring him into relation with
others. The stakes were progressively raised and the story of
how he helped Rose was the highest point of all. In this managed
process he had to succeed. There were occasions when he did fail
and though I would have chosen to protect him, it was not possible.
One such incidence was when he could not fix his sister’s
bicycle. I have dealt already with the consequences of failure
in this case.
However, in spite of his very severe head injury Barry has shown
that he still has the potential to contribute to society in some
way. He is able to do very fine handyman work and can successfully
hold down a supported employment position. He has also shown that
he can be part of a community and at the time of writing he has
begun to have some glimmerings of a social network. All of these
things are completely dependent on him receiving a high level
of support at a constant rate and they are not sustainable without
this support. It puts him into a very vulnerable position if the
support is ever withdrawn and I have to ask myself whether a status
quo might have been reached at some lower level of achievement,
which would be cheaper to fund. I believe that there is a social
dividend which comes when we deal with the most vulnerable people
in our society in a humane way. I have seen how Barry and his
family have touched the lives of many of the people who have come
into contact with them and my personal answer is that the amount
of support which he has received is worth it.
The occupational therapist needs to seek professional supervision
when working with brain injury
The kind of personal political judgements which I have come to
make through working in this way have led me to question whether
I am can continue to call myself an occupational therapist. What
has happened to my boundaries and my professional integrity along
the way? Surely there is a strong suggestion in all I have written
that I have come far too close to this young man and his family
and that I am therefore bound to compromise the therapeutic vision
which I have. I have certainly redefined what I mean by professional
boundaries, but I do believe that I still have boundaries intact
and have engaged in professional supervision to ensure this. The
boundary, as in any therapeutic relationship, is defined by my
sustained concern for his well being, which I put beyond my own
within the context of this particular relationship. I am employed
directly by the family to do a particular job, which means that
I am accountable to them. However, I believe that this kind of
accountability has compromised my integrity rather less than might
have been the case if I was employed by an agency. Even in situations
where I have disagreed with the family I have never doubted that
Barry’s well being was at the forefront of their minds.
It has been a collaborative approach. I have gained much from
a close association with his mother, who has been open-handed
in trusting me to do the job which I have been employed to do.
I have had to accept that who I am as a person has had a profound
impact on the ways that I addressed the issues. For instance,
there were times when I struggled to justify the amount of effort
which we expended in getting Barry out of bed. From an anthropological
point of view I was familiar enough with cultures and subcultures
where there would not be such an insistance on bringing his body
clock into alignment with the dominant rhythm of a ‘clock
driven’ society. He still does not want to get out of bed,
but the struggle is no longer one of daily confrontation with
the fact of his brain injury. He has a routine and a reason for
getting up which only gets stronger as time goes by. I had many
reasons for maintaining my stance and I believe that the long
term outcomes have given the justification.
The obvious ethical question about my joint position as practitioner
and researcher has, I hope, been addressed under the section headed
“method”. At all times my role as a practitioner had
to take precedence over my role as reseacher and so it could only
be a retrospective study. However, I do not believe that this
made for either bad practice or bad research.
I have many questions about the particular system of care which
has been constructed around Barry. It seemed to be the only one
which was possible, both then and now, but it poses many dilemmas.
In the first place the fact that so much energy is focussed on
one vulnerable young man has the potential to turn even the gentlest
of people into a spoiled brat. The fact that it is an individual
care package means that young facilitators, who are often female,
are exposed to a situation where they are working with him in
a one to one situation for long periods of time. I found it difficult
with years of training and experience as a therapist, but none
of these people has any training beyond what I provide on the
job. There have been facilitators who have resigned saying that
it is simply too difficult, particularly after episodes of angry
outbursts from Barry, or extended periods when he has simply refused
to get out of bed for a particular facilitator. The nature of
the relationship between Barry and his facilitators is quite intense
and it gives the semblance of being a real friendship at times.
However, this appearance is challenged when the facilitator leaves
and almost invariably has no further contact with Barry. His hurt
is masked behind his inability and/or his refusal to remember
the person who has left, but it is no less real for that. Usually
he has lost not only his relationship with the facilitator but
with the wider group of friends whom they had introduced to him.
The ethical question becomes one about whether it is right to
create a virtual institution around one person, with all the drawbacks
and advantages that this brings in its wake.
The fact that he is in a relatively well supported situation
means that he is terribly vulnerable to being used in relationships.
It will not be possible or desirable to protect him from the inevitable
hurt, but it will be necessary to protect him from those who would
take advantage of his situation. The ethics of how much one can
interfere in another adult’s life are fraught and as Barry’s
life becomes ever more complex and he sets up more permanent relationships,
the questions are likely to loom even larger. For instance the
question of whether he should have a pet, today, becomes at another
stage one of whether he should have children, tomorrow. These
debates have been going on for a long time in other fields, but
the published literature reflects little of this concern in the
field of brain injury.
Next page: Neurology
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Stories intro
Story 1 - The accident
Story 2 - The OT arrives
Story 3 - The CD rack
Story 4 - The troll
Story 5 - The door
Story 6 - At work
Story 7 - The letterbox
Story 8 - Employment
Occupation in Literature -
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Occupation
Alienation
Being "well occupied"
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The person with brain injury
Discussion -
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Ethical concerns
Occupation and neurology
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