Treatment is not enough: giving the body back

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The aim of this paper is to separate out the aspects of treatment and caring in order to explore the idea that the professional skills incorporated in caring, support the re-unification of an individual with their body, thus allowing them to become active managers of their life with arthritis, and able to engage in a partnership of care.

treatment: taking the body away

Treatment is of great clinical value to the person with arthritis as it lessens the intensity of the physical symptoms. Early diagnosis, and good disease management helps to prevent joint deformities and slows down the disease process. Debilitating symptoms such as pain and stiffness can be well controlled meaning that the person with arthritis can remain independent and mobile. The health care team offer advice, support and equipment that allow cherished life activities to be continued.

Treatment, by its very nature focuses on the disease as an entity and separates the diseased body out from the individual. During the consultation the main thrust of the questions are to establish what physical symptoms are present and how the diseased body is prevented from carrying out its normal lifestyle activities. The diseased body is moved into the realms of the medical professionals who then inform the individual about caring for this diseased body. Doctors prescribe drugs and other treatments for it and also refer the body to other professionals. Others design exercise programs or create splints or gadgets to support the diseased body during times of need. The main focus remains the body and the progress of the disease in it. The expectation is that these treatment programs will be followed as they offer the best course of action in order to get the body back under control. In this sense the body is now lost to the individual who is expected to follow the treatment program, and the medical professionals now hold the diseased body as they know best what should be done with it. The individual now becomes disempowered and may feel unable to make decisions for themselves about what may or may not be good for their body.

fighting the body

Consequently a person who sees their disease and their body as separate from them is more likely to want to fight it. They may perceive their pain and stiffness as an enemy to be overcome. Rather that seeing rest as helpful it may be seen as weakness, giving into the body's demands. There is more likely to be a wish to hang on unrealistically to previous life styles (as discussion about lifestyles is not on the agenda of treatment style professional consultation), or put life on hold until the body is beaten, or back under control. In arthritis this inner conflict is unhelpful. Sally Gadow states "In the negative view, the body is seen as increasingly an obstacle to the self, to the point of appearing no longer passively resistant but actively hostile. Regarding the body in this way, as only object body, we are confined to the alternatives of the body as instrument or oppressor. Therefore, with its increasing "failure" to respond to the self in aging and illness, it is inevitably felt as oppressor. It demeans and humiliates the self, refusing to perform basic functions reliably. It dictates prohibitions and destroys possibilities". The consequence of separation and conflict is that healing is denied (healing as in making whole or restoring unity).

Treatment is most effective in an acute setting where the body will recover fully from the disease and the individual will return to their previous life style, with no long term effects. In chronic diseases such as arthritis this full recovery does not occur, it becomes a life long disease which is part of the person.

caring and partnership

This calls for a partnership to emerge between the person and their arthritis as well as a partnership between the person with their arthritis and the medical professionals. This partnership needs to focus on the present and on the person's experience of living with their disease, in all dimensions, physically, emotionally, mentally, spiritually and socially. The focus on the here and now allows the full expression of the uniqueness of the experience of that individual. When the medical professional suspends the need to ease the suffering of the other and cure their disease, both are able to meet in a setting of genuineness. This is an essential basis of caring from which a unique partnership of management can emerge, in which the individual with their arthritis remains a self manager and the medical professional supports and develops this role with the individual.

Authur Frank (1991, p.47) describes the skills of caring beautifully when he says "The caregiver's art is finding a way to allow the ill person to express his needs. Eventually a balance must be worked out between what the ill person needs and what the caregivers are able to provide. In order to find that balance, caregivers, whether professionals, family, of friends, must help the ill person figure out what he needs. Only then can they negotiate what they are prepared to provide."

giving the body back

At a basic level combining care with treatment involves the recognition of the person as an individual, who lives their life with arthritis. The prescribed treatment stems from a center of care with genuine concern for the welfare of the individual. This is expressed by eliciting the physical needs of the individual and providing services to meet these needs. When the focus is on the retention of cherished activities, for example, gardening rather than pain and mobility in general, the professional becomes part of the understanding of the lived experience, and the retention of this cherished activity a vehicle through which the body is given back.

Listening to the persons life dilemmas and emotional concerns may be considered a move into the realm of counselling, and therefore outside of the remit of the consultation. There may also be a concern that allowing emotional issues to be raised could lead to a "pandora's box" being opened, with time being limited it may be considered inappropriate. On the contrary, individuals who are given time to explore and own their feelings have the opportunity to be heard, hear themselves and start to build a picture of what life is like now and start to create understanding for themselves. It is only from a place of understanding that they can begin to formulate questions which have meaning to them and which allow them to start uncovering what they really need from their medical professional. This is an enabling role: supportive, catalytic and even cathartic at times. Heron (1989).

skills of the enabling role

The skills to be developed in an enabling role center on empathy training, and catalytic and supportive interventions. Emphasis must be placed on "active listening" and following the individual's narrative as it unfolds. Reflective interventions would be used to demonstrate empathy and confirm understanding. These skills would also highlight and re-enforce ownership of the body and self understanding. Open questions would predominate in the early stages of the consultation and enable the individual to fill out their narrative. This would take the professional from listening to the impact of the disease on the person to understanding the "experience" of living with the disease and the reality of what this must be like. Targeted questions focused on possible treatment options must be avoided if early closure and an unfinished narrative is to be avoided. A fuller picture of each person's lived experience will allow for adequate opportunties for anxieties and cherished activities to be highlighted. These can be referred to later in the consultation when treatment management is being negotiated. As Frank suggests individuals need time to "figure out" what it is they need, and only then can appropriate treatment be provided.

Being able to share an illness narrative with a medical professional who is actively listening also promotes the self healing process. Sharon Kilty (2000, p.17) "Illness stories are therapeutic for tellers who have the opportunity to be heard and to hear themselves. As they tell and retell their story they can begin to adjust to the person they have become. From this position they can begin to uncover the person they could become. Telling their story has given them and opportunity to step outside themselves and witness who they are. This dis-identification allows new possibilities to emerge". This all implies eliciting and discerning the relationship the person has with their disease and supporting the potential transformation of that relationship in the long term. Action planning could become an integral part of the consultation process once both parties have clarity, emphasizing self-management and peer support as well as the use of agreed professional services.

experiential training

Training programs would have to target the skills described, primarily through experiential work. This could include hearing and reading narratives which highlight the uniqueness of individuals experience of living with arthritis, followed by discussion of the impact of these narratives on the students. Videos would demonstrate the use of all relevant interventions including open questions such as "what is it like living with this disease?" in an exemplary interview. Live interviews with individuals could allow students opportunities to raise their own questions and concerns. Students should be encouraged to work out the implications for their role and the skills required to support unification of the body.

Substantial experiential work would be required to give extensive practice in all the skills. The students would play both roles with systematic reflection and review. Review would draw out the significance of body language and how it communicates genuineness and caring.

Students will need time to discuss the impact of taking on caring in this new role, the need for self care and the pitfalls of burn out.

Training would expect to develop commitment to apply the skills with self assessment, peer review and peer support. Follow up would explore successes and difficulties of applying new skills.

References

Frank A (1991) At the will of the body. Pp 47. Houghton Mifflin company. Boston/New York.
Gadow S (1982) Body and Self: a dialectic. In Kestenbaum V (ed) The Humanity of the Ill: Phenomenological Perspectives (pp86-100). Knoxville: University of Tennessee Press
Heron J (1989) Six Category Intervention Analysis, third edition, Human potential Research Group, University of Surrey.
Kilty S (2000) Telling the illness story: The healing power of words. pp17-18. The Patient's network. Vol 5 no3.

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