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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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